Reawakening

Days 129, 130, 131, 132, 133, 134, into 135

2010-10-12T03:49:00.000-07:00

OK, so school was off - hard to find time to write here!

We had the first of the team wrap-around meetings/p-t conference at school on Wed., Day 129. Generally doing just fine - has his moments at school (as on the daily sheets) but really likes math and does well in it! Came up with a list of probably 20-25 strengths for Josh at the wrap-around meeting! Whoo hoo!

Day130, no school. We met Peter's mother and sister at the Botanical Gardens. After some initial problems (a PNES in the parking lot and then sitting down in the middle of the visitor's center!), the day was really good. I did use one of the Gardens' wheelchairs and Josh would not get up to walk, but he had a great time seeing them and doing the Gardens' bingo game - spotted everything on the card except the Fall weather - it was hot, sunny, and more like a June day! Afterward, we went to Max and Benny's to pick up lunch and did train hunting while we had deli - yum!!!

Day 131, I had to work so Gramma and Boompah came to kidsit. They said he was terrific all day. Had a session with Dr. Straube in the evening - talked about how Josh either winds up not having or comes out of quickly his PNES or meltdowns when you acknowledge some feeling he's experiencing. As we were leaving, he started to go into a PNES and doc asked him if he was nervouse or scared that he was going to have a "brain hiccup" (epileptic seizure) and fall, Josh came right out of the PNES and said yes. He got up and went right out to the car! Amazing. Gramma and Boompah hung around the house and we all had deli dinner when we got home.

Day 132, I hadn't planned on working on Saturday but Gramma and Boompah were all prepped to kidsit. So I went in to work for 1/2 a day and then we all took a drive up to Wisconsin to see the colors. Sorry, Badger fans, but the colors in Illinois were MUCH better! Josh was totally wiped and did hit Gramma once in the car but he calmed down immediately. We stopped for a snack and I made him get out of the car to cool off - and he did, even gave Gramma a hug as he was getting back in the car and told her he was sorry.

Day 133, lazy, lazy day! Yeah!! I was watching a movie at one point ("O Brother Where Art Thou") and Josh wanted to watch TV. I said nope, I was watching the movie. He went right in to the piano and started PRACTICING!! He practiced for 20 minutes all on his own! After the movie (it ended shortly after that), I went in and practiced with him for another 20 minutes! He really likes playing - Artur Rubenstein he ain't, but he likes it! Yeah!! Piano was one of the things the wrap-around team thought of as using as a reward during school - the school social worker may even have a keyboard to bring in so Josh can use it (and maybe the other kids as well!).

Day 134, Monday, no school - Columbus Day. We had another wrap around meeting here at the house- just Gramma, Boompah, me and Josh with the facilitator. Came up with my strengths, some ideas for a male mentor/respite worker, and wrap-around folks will pay for Josh's yoga class when that starts. She also said that, after Dad brought up the problems with communication, that there may be a way for wrap-around to pay, at least part, of the speech therapy at the center in Grayslake - yeah!!!!! That's the place that understands the connection between the speech and sensory issues, and wants to do the Listening Therapy again with Josh. That would be soooo amazingly terrific if that works out! Good meeting, Josh was very talkative the whole time.

So, here we are into Day 135, Tuesday. Piano tonight, don't think there's anything the rest of the week except school and work -phew!

Day 127, 128 into 129

2010-10-06T03:42:00.000-07:00

Josh has had pretty good days. The chart system is working for getting on the bus- he gets right out of the car and onto the bus to earn a "piece of the donut" - the deal is he earns 5 pieces of the chart and then gets a real donut. But, it's like he has to have the PNES or meltdown so he's been having it in the house. Stinker knows the deal was he has to get out of the car and onto the bus without laying down, so that's what he's doing. Hhhmmm...

Construction outside the house yesterday and today - new street going down (yeah!). Lots of trucks and noise. The afternoon bus was not going to be able to come down to our house so I went up to the top of the hill to meet them - Josh got off without too much hesitation or problem (yeah!).

The class was at SEDOM yesterday and Josh WENT IN THE POOL again! Yeah!!!

Had his first piano lesson last night (Day 128) and did just an AWESOME job! Turns out the music therapist doing the lessons knows Josh's very first music therapist from Ottawa - they were even roommates during training/college! Small, small world. They worked on numbering his fingers, identifying numbers and black keys in both the music book and on the keyboard, she had him "playing" the black keys, and, really creepy, she put on a CD of some piano music and he was plunking on keys that were in the same key/same notes as on the CD - weird! The therapist was a bit hesitant based on what the NISRA folks had told her about his experiences at camp this past summer. But, within minutes of starting the lesson, she said she didn't see any problem with him taking piano and thinks this is going to be great (for him and in general)! As the lesson was ending, she said he is just delightful to work with! YEAH!!!

Another weird - after the lesson, I said he did so well that we would pick up dinner and go see trains for a car picnic. I called in the food order to the restaurant and, when we parked there, he said "Eat inside." I was stunned! He hates restaurants! It looked really crowded so I said I'd check it out first - and it was really packed. So I went back to the car and told him, then asked if he really wanted to go in or eat at the trains - trains. But, maybe next time!

The power of music!

Today, Day 129, is parent-teacher conference and the first of the team meetings for the wrap around services - sure hope the wrap around facilitator remembers!

Days 122 through 126

2010-10-03T17:32:00.000-07:00

Well, when things are just so stressful, unfortunately something has to give - and writing here gave. Wednesday, Day 122, was just as crummy as Tuesday had been except after getting in the house after school, things were fine.

Thursday, Day 123, interesting thing happened. Josh got on the bus and I said something about Frank, the aide at school. Josh said, "Frank's gone." I was kind of taken aback and I asked if he was sick or something. Josh said, "Frank's gone." So I asked the bus driver and she said she hadn't seen Frank for several days. Hhhmm.. So I wrote Emily, Josh's teacher, an email and asked. She wrote back that Frank had been transferred to another classroom (don't know when) and that Josh was actually doing better since the transfer. Hhhmm.. didn't seem like much better at home! His class went to the greenhouse, and then to the Jewel to practice grocery shopping afterward. They are using the wheelchair a lot with Josh, it seems, and they used it at the Jewel - he was still totally overwhelmed by everything and, when he settled down somewhat, he was apparently swinging at staff members (Emily has such faith that she is sure he will eventually get used to school outings like that). When Josh came home from school, he walked in the house and said, "I miss Frank." I said something about how it is sad when people go away, or something like that, and I asked if he wanted to talk about it - "No." Josh just went on playing. Had a quiet evening. I decided, also, that he had been sleeping without the fan on (change in weather) - maybe that white noise was helping him get a better sleep, so I turned the fan on when I came up to bed.

Friday, Day 124, Josh got up and out of bed without any problem, had a good breakfast, except for one laying down thing, it seems that everything else during the day was excellent. So, the interesting thing is perhaps the fish oils are evening out in Josh's system, perhaps an acknowledgement of something that's bothering him was needed, perhaps he had a better night's sleep with the fan on - who knows - but Friday was excellent, Saturday (Day 125) was good but quiet with Gramma Bev and Boompah here (I can't wait to stop going to work on Saturdays!), and Josh did really well when Joan came for dinner and Scrabble - Josh went right up to Joan, pointed to her shirt (kind of surprised her!), and said, "UPS, cool!" (she was wearing one of her UPS shirts). He didn't want to go to bed with company here, but he eventually did snooze off on the couch and then went up without any problem. (Scrabble - first game I won by 3 points, second game, well, let's just say Joan kicked butt!)

Today, Day 126, I decided to try a major shift in how I handle the a.m.'s on the weekends. Josh always wants to go train hunting - well, OK. But, what has happened several times is that we get up early, he noshes on a quick breakfast while I make a picnic lunch, and then he lays down or we both plop on the couch, and we don't get moving until noon or later. So, this a.m., Josh was up at 6:00 - he came in and said good morning. Since I hadn't gotten to bed until after 2 (long Scrabble games, and Joan had her iPhone playing music on Pandora.com - fantastic playlist - Peter/Paul/Mary, Dan Fogelberg, Billy Joel, The Kingston Trio, Serendipity Singers, etc. - we were singing for hours!), I was totally wiped so I told Josh to go pee and got him back into bed. He came back in at around 7:00 and layed down on my bed (his feet by my face-YUCK!), but we both dozed for another hour. I got up to go into the bathroom and he just went back to bed - I came downstairs and had breakfast, lounged, watched a little HGTV, and he had fallen back to sleep. I figured, heck, why rush to go train hunting, let him sleep and I get some quiet time to myself. He got up on his own around 12:15, went to pee (like a racehorse!), got dressed and we headed out - I had packed up the bare essentials for eating and we stopped and Panera to pick up PBJ for him and a Cuban Panini for me (YUM!!). Had a great afternoon, got home around 5:00, made a vegetarian dinner, and it turned out to be just a lovely day all the way around!

So, in talking to other parents, while it can be a pain, it can also be a pleasant way to start a day by letting your tween just sleep! Think back, dummy, isn't that what you did when you were that age!?! Thinking about it, I remember Gramma Rose getting frustrated with me sleeping late when Scott and I went down to Florida for those couple of summers - just about Josh's age now. So, lighten up - sleep is a good thing for him, and those couple of hours of "me" time is good for me!

Tomorrow, another week and into Day 127.

Day 121

2010-09-28T20:05:00.000-07:00

OK, really rotten morning. One of those days when Josh wouldn't get up from the floor, peed on the floor, then took forever on the pot. By the time he was dressed for school, there was no time for breakfast. So, he took it with to school and, as fate would have it, had a pretty good day at school. They did not have swimming but had art - he's got something about the art teacher and he hit her again - could be the smells in the room, the fine motor aspect of it, don't know if she moves in close, just don't know why. They did a foot fish - don't know if this is really how they did it but Josh said he put his foot on the paper and someone drew around his foot, then he put eyes and "paper stuff" on the fish. Don't know if the hit may have happened when drawing around the foot or what - didn't get the whole story. On the other hand, when he is working with almost anything else, he participates, gets praise for his work, and, according to the daily sheet, had a much, much better day than yesterday, and "it was a pleasure working with Josh today." Apparently there was something that happened getting on the bus after school, though - they brought him out in the wheelchair and he slid out of it, getting his rear end stuck in the chair. After they got him out of the chair, he had one of his "meltdowns," then got on the bus - all of it about 10 minutes. Getting off, he was hesitant and it took about 6 minutes to get him off - I finally got up on the bus, took his hand and said, "let's go." He got off. He was really tired, I could tell.

But, we sat down on the couch and took about 15 minutes or so to just talk. Josh was resting his head on me and we talked about cooperating, what that means, how we all need to cooperate with each other, etc. I told him his behavior the last few days is not cooperating and he needs to change that. He said that sometimes when he just sits down or lays down on the floor he sees the blue light or his eyes get wobbly. So we talked about how he really needs to use his words to tell people - if he wants people to cooperate with him and not get frustrated or angry, then he needs to tell them what is going on in his head and then maybe they can help him instead of getting angry or whatever. I like sitting and just talking with him - maybe he doesn't understand all that we talk about but, eventually, maybe he'll get it.

As I was making dinner, he dumped the entire wastebasket of his newspapers - huge pile right by the couch. He was just going to let it sit but, nope, I said he had to pick it all up (roast beef got a little overcooked but oh well). I held the bag and we sort of made a game out of it - I see a blue and white paper, I see a paper with a letter X, etc. - it was all picked up in about 5 minutes. He ate a huge dinner and we talked the whole time. I have to say, sometimes my brain starts hurting figuring out his words and the context he speaks in, but it is nice to have a conversation.

Which leads me to the show Parenthood. I happened to catch it tonight. There's a kid on the show who is supposed to have autism. His dad was frustrated and hurt when the kid didn't want to talk to him, have a simple conversation, etc. All I could think of is that I know so many people, sometimes myself included, who have the same frustrations. It's hard raising a kid with needs, it's sometimes lonely, it's exhausting on a lot of different levels. Sometimes you start the day behind the eight ball because your kid behaves in such a way that you just head off to work exhausted. But then there are the times that your kid accomplishes something that you've never thought he could, or he does engage in a conversation that makes a lot of sense, or he comes up with an idea that surprises the heck out of you - and it's all worth it. My career is dealing with people who have been convicted and are imprisoned or serving time of some sort - it's the rare occasion that we get a win, but when we do, we all savor the moment and it makes the career worth it - we've accomplished something, we've upheld the constitution or someone's rights in some way. It's the same in my life with Josh - I savor those moments when there's an accomplishment or a surprise, or a hug from out of nowhere.

Tomorrow, Day 122.

Day 120

2010-09-27T18:30:00.000-07:00

Another mixed bag today. Josh got up just fine, got washed/dressed, ate a good breakfast, then wouldn't go outside for the bus. He finally did after a few minutes, then had a full blown PNES when the bus got here (bus was pretty late). The daily sheet said he got off the bus OK, but then went into the bathroom at 9:10 and didn't get off the pot until 10:45! They had to sort of "force" a "meltdown" (we really need to come to terms with the terms - I'm pretty sure they were talking about a PNES) and he got up all happy and went right into the hygiene stuff without a problem. They went for a long walk and, in a crosswalk, he laid down. They had the wheelchair with them so got him into it and off the street. He walked, then, for about 45 minutes! Josh's teacher wrote that she really wants to use the wheelchair for those times that it could be, really, dangerous so they are putting limits on it - he can use the wheelchair to cross the street but only if he uses his arms to move it, same with some times in school, but otherwise he has to walk. And, his teacher started a new kind of visual calendar that tells Josh when it's OK to use the wheelchair and when it's not. My concern is he is going to become reliant on a wheelchair but maybe not, and I know it makes it all easier for school folks. I just wish, hope, pray that these PNES and the laying down thing eases up. It actually has since last spring, but it's behavior that is definitely getting really, really old. Other than those times at school and this a.m., he seemed to have a pretty good day. I simply don't get it....

Tomorrow, Day 121. Keep fingers crossed that it will be an easier day - they go to SEDOM, swimming, etc. Could be interesting.

Day 117, 118 and 119

2010-09-26T19:48:00.000-07:00

Kind of a rough few days. Don't even remember what the note said for Friday but I know the bus times were hard. Yesterday I had to go to the office again so Gramma and Boompah were here. They said Josh played around for awhile but mostly they were just "lazy." Josh wanted to order supper so we ordered and Dad went to get it - when he got back, Josh was almost totally asleep, didn't get up to eat, and did fall asleep while we were eating. He wound up going up to bed without eating (he did get his meds in along with an NV - he wound up having an extra NV since he didn't drink them on Friday - he had school lunch and I'm not exactly sure what happened with the drinks for lunch and during the day). Anyhow, he had enough protein throughout the day.

Started Josh back on the fish oils (earlier than I had planned but that's OK) - Ultimate Omega blend from Nordic Naturals - keeping him on the basic dose (2 caps a day) for now and he's taking it without any complaint - "the magic fish" that helped him so much with speech. I started him on them yesterday, Day 118. Today, Day 119 (of NV, that is) his sentences were already longer and clearer. But, on the other hand, he was so uncooperative today. We went to Ottawa - but it took an hour and 15 minutes for him to get off the floor after getting out of bed, then just sat on the toilet for another 20 minutes or so. I think he was working himself up to being overly anxious about going. We finally got out the door and to Ottawa. The day was OK except he wouldn't even consider getting out of the car. On the way home, he got very teary and said he missed Ottawa and "the old house" (which happens to be for sale). We talked about how I miss Ottawa too sometimes, and it's an OK thing to miss our friends and the happy times we had there. But, it's also really important to think of the good things that are happening now - so we went through a bunch (we like our house, our cats, Josh loves his teacher and school and SEDOM, etc., etc.). When we got home around 5:30, he wouldn't come out of the car. He finally came in around 6:10 or so. He went right into the bathroom, threw his dirty clothes down to the basement, came into the living room where I was. I sat down on the couch and said today was too much for me, that his behavior and the uncooperativeness was too much for today. So, what does the stinker do - comes right over and gives me a hug and kiss, and says, "I love you, Mommy." How can you possibly remain upset or worn out after that?

Days 114, 115, and 116

2010-09-23T15:57:00.001-07:00

Well, except for a few hitting incidents at SEDOM on Tuesday, Day 114, Josh had a pretty good day. And, except for that little incident, Mrs. Lincoln, how was the show? Hhhmm... I guess there were a couple of hits while helping Josh change clothes before/after swimming (and he had a great time in the pool and did well there! whoo hoo!!), and, for some reason, he got his art teacher right in the face. Don't know what that was about and Josh wouldn't talk about it. I think the daily sheet said there was a meltdown or two around the bus and lunch times so, really, not so great a day.

But, it could be because he was starting to feel sick. On Wednesday, Day 115, I got a call around 1:00 or so that he had thrown up and was running a fever. Seems there was another kid in his class who was sent home with the same symptoms earlier that day, and, when I got to school at 2:00, there were two other moms from other classrooms picking up their kids. The secretary said to one mom that she tried to get her kid to keep some crackers down but he didn't. Hhhmm.. So, I brought Josh home and he just was fine! I had called Gramma and Boompah on the way to pick Josh up - I had planned on stopping after work to pick up some last minute things but wasn't going to be able to. I knew they were out and about so asked them if they could pick up the couple things and just drop them off. Little did I know that Mom had gotten a shot for her eye and was wearing a big 'ol eye patch! Yeesh! So they stayed only a little bit and Josh was up and playing. Go figure. He still had a slight fever, and I only gave him some juice and a piece of toast later in the evening - it all stayed down just fine.

Today, Day 116, I had arranged to work from home - reading a transcript - and Josh snoozed almost 3 hours in the morning. He kept himself busy, watched some movies (I got him to watch Annie Get Your Gun! Yeah!!! He loved it!!!), snoozed a little more. He felt a little warm around 4:00 - but thermometer didn't register any fever - it is hot in the house today from the weather. He kept food down - did it easy - mostly juice, a couple cups of milk with the NV in it, some toast - did a french toast thing for lunch and then just a PBJ for supper with a little fruit. He seems fine so he'll go to school tomorrow. Right now, he's laying on the couch, picking his nose - YUCK!!! I wish I knew a way to get him to stop that. Unfortunately, there are several adults he knows/sees who laugh about it, make light of it, and engage in the practice themselves - but they tell Josh they do it in private, in the bathroom - wish Josh would just pick that schnozzola in the bathroom! YUCK!!!

I'm watching Josh out of the corner of my eye - he's laying there playing with his fingers, pressing pointer to pointer, middle to middle, etc., like finger exercises! Pretty cool to watch.

Tomorrow, Day 117. Decided that, on Day 120, I will reintroduce the fish oils - Josh has been off those for a long time now for various reasons. We'll see if there are any surges or anything. I have not been happy with how speech is going - to me it seems like a bit of regression in articulation although his sentences are much lengthier. The speech therapist who did the eval a couple of weeks ago called yesterday and said she will not recommend speech therapy at this time but will recommend Josh get evaluated for an assistive device. Hhhmm... She sent the referral over to Josh's doc so I'll call in a few days for the referral. Therapist is most concerned about functional speech - well, why not recommend speech therapy to work on verbalizing functional speech in an understandable way rather than relying on a device? I'm conflicted on this....

Day 113 into 114

2010-09-21T03:48:00.001-07:00

Looked like a pretty good day (with a couple of "meltdowns" during the day), Day 113. Daily sheet showed Josh participated in even more things at school, was working well with the adults.

I was cleaning out a box from the garage (still have some in there that haven't even been opened since moving in a year ago!) and found an exercise program I had picked up at a special needs seminar. Program was designed for folks on the autism spectrum, ADHD, depression, and other issues. So, I took it out and Josh and I were exercising. I kept having to get him up off the couch but, in fact, he did it! Lots of crossing the midline stuff, marching, stretching, some complicated things (the two folks on the DVD both are on the spectrum) - Josh really likes the stretching. Curiously, the DVD says that calf stretching is good for speech development - hhhmm... wonder why? And crossing the midline (touching right hand to left knee while marching, etc.) is really good for a lot of things. So, if I can get Josh up and moving to that DVD maybe three times a week to start, it will be really good for both of us!

Into Day 114 - at SEDOM and swimming! Josh was talking about the swimming as he was falling asleep last night - sure hope they use the chair in the shower room again as that really made him feel safer last time!

Days 109, 110, 111, and 112

2010-09-19T17:20:00.000-07:00

Did it again - too many days without writing. Yeesh.

The daily sheet on Thursday and Friday (Days 109 and 110) show that there seems to be a couple of times that are consistently hard for Josh and his transitions at school - goes into "meltdowns" or whatevers - right about lunchtime and afterward when they go out or for their "leisure" time. And, it doesn't seem to matter whether it's at school or when they are at SEDOM or the greenhouse - so I'm wondering if he's just tired (so sensory stuff is exacerbated), or maybe just plain hungry/low sugar/headache before lunch. Josh's p-t conference is coming up in two weeks so definitely something to talk about, if not before then. Josh's teacher is, understandably, a bit on the busy side especially with one new student to her classroom, so I need to remember to be patient.

Thursday (Day 109) Josh came home with a pink envelope for me. They had been playing a listening bingo game during the day and I guess he got to choose a prize for winning a round - he chose a present for me! This is the first time he has, on his own initiative, chosen to give a present to anyone - surprising! And it was appropriate - it was a really cute bracelet!

His teacher wrote that she was helping him make a card for me (the card in the pink envelope)and he hit her a couple of times in the face - he has had a couple of hitting incidents (hit a kid in the lunchroom also that day). I know this sounds wacky, but hitting was always Josh's response (that fight or flight thing) to sensory and anxiety overloads. When he broke the leg last Fall, the fight went out of him - he didn't even really hit the people in the hospital even with all the pain and fear. He went "into himself" and that's when the seizures started - both epileptic and non, as well as the anxiety stuff. It's been heck trying to figure out things this past year since it has been so incredibly different with him retreating into himself. The hitting in the last few weeks maybe is him turning the corner and coming back to himself - not that it's great to be hitting, but it seems like this is a return to the Josh he's been until last Fall. I don't know, just a theory.

Josh did an "excellent" job on Friday, Day 110, with the buses, and, except for the meltdowns before and after lunch, he had a great day it seems - participated in things, worked well with the adults, was "compliant," and did a great job getting off the bus even with workers next door banging away putting a new roof on the neighbors house!

Yesterday, Day 111 (Saturday), I had to go to the office again (wish Francis would come back, or let me know when she'll be back so I can figure out a better schedule for the time being) so Gramma and Boompah kidsat for the day. Mom said he was terrific, played with the train, watched a little TV, they all snoozed a little, he was helpful in the kitchen - and she said he was such a gentleman! At one point, she was getting up to go the bathroom and Josh got up, held her walker to stabilize it, went ahead of her to the bathroom and turned on the light and lifted the toilet seat lid! What a guy! She said later that, at one point, she was worried Josh was going to hit Dad - Josh was going to the fridge to get his milk for lunch and Dad was leaning right next to him at the fridge door to help him find it - up close and personal, so to speak. But, Josh did great! And, back to bathroom stuff (sorry), Josh has been more particular about his modesty, shall we say.. Mom would normally check on him in the bathroom when he goes to pee or whatever (!), but now he's asking for Boompah - maybe a guy thing, but, and I just thought of this, maybe it's Josh being nice to Gramma - make it easier on her to not have to get up the stairs to the bathroom? Hhhmmm...

Today, Day 112, Josh and I were totally lazy. We were going to go train hunting but after breakfast we both just plopped down on the couches and fell back to sleep. We didn't get up again until almost 11:00! I was going to mow the lawn, wash the kitchen floor, vacuum some, make some breakfast cookies, etc., etc. Nope, zip, nada - we both just were, as I said, totally lazy! It felt good!

Tomorrow, Day 113, back to the plan, Stan!

Day 107, 108, into 109

2010-09-16T03:53:00.001-07:00

Day 107 - had a good day at school even though a few "meltdowns." It seems there are certain times of the day (and yesterday's note shows it again) when the meltdowns happen - getting off and sometimes on the bus at school, lunchtime. There has to be some connection, and a way for school folks to circumvent the habit it seems he's into there. The rest of the days go really well and the note is always that Josh had a good day or a great day - and the communication system shows he's working hard, is participating in things, etc. The major transitions during the school day are what is causing problems.

At home, he's getting on the bus really well, off the bus easily, and he's playing around the house after school. He's tired, that's for sure. He's not taking any snoozes during the school day (with rare exception), so when he gets home he plays for a couple hours, we have dinner, and then he just collapses on the couch - snore city! Going up to bed has been no problem - I just wake him, and walks right upstairs.

Heard from a friend whose daughter has autism. Keeping them in my thoughts and prayers, that's for sure. One of those stories where the dd was totally mishandled by school folks and she wound up in behavioral hospital for 9 weeks. Horror story all the way around. She's home now, but it sounds like they are going through the wringer. (so glad I didn't listen to one doc who suggested Josh go into hospital - things have improved so much since meeting with Dr. Madamala and Dr. Straube - finding the right people is so gosh darn hard and I feel like we've been very lucky in that regard).

Yesterday, Day 108, was the one year anniversary of the broken leg. I happened to look at my clock on my computer at 12:48 - just about the minute last year that I was getting in the ambulance with him. Yeesh, what a memory to hold on to. Thank goodness he made the recovery he did - that leg is stronger than ever, and even straighter than it had been with practically no pronation in that left foot anymore! It's taken a long time, but I think even Josh is feeling like he's stronger.

So, into day 109. I can't wait to set the clocks back - this getting up in the dark stinks!

Days 98 into Day 107

2010-09-14T03:49:00.000-07:00

Wow, computer problems, busy-ness, and just plain forgot - 10 days without writing here - oops!

Just summary, then - overall, PNES have gone down to maybe - maybe - one a day. There was one day Gramma and Boompah were kidsitting while I went to the office (this past Sat. - Day 104, I think that would have been) - Josh had a terrific day - played all day with them, took a very short snooze, was great about getting up to go pee, absolutely no meltdowns or overloads or PNES. Was the day after a session with psychologist and doc brought in his dog - a little pet therapy. Josh had a great time with the dog - a bit slow on leaving but no full blown PNES, just a very short overload as he got in the car after the session, but then jumped up and took the leash from doc and ran around the parking lot with the dog! I really have to reconsider the idea of getting a dog! Josh is having transition problems at school - especially into the cafeteria. He says it makes him "nerwous" with all the noise but we have decided to keep on trying. Our kidsitter's grandma, sadly, passed away on Sunday so I hope (selfishly, I know) that Francis will be joining us again soon. Had speech eval and vision exam on day 101 - not encouraging with the speech eval - she said she did not want to be discouraging because there is always room for improvement but she is going to pitch it to the insurance company that Josh needs work on functional speech and is going to see about getting a small assistive device for such circumstances as when we're out in a mall or something like that - in case he gets separated he will have the device to let people know who he is and who I am (since speech is hard to understand for strangers). I had hoped speech would be affected by NV but I'm not seeing it - other things, yes, but not speech. Vision exam went well - 20/40 in both eyes and no need right now for glasses (thank goodness!), but something to keep in mind.

So, today is, if I've counted correctly, day 107 on NV. On with the day!

Days 95, 96, 97 and into 98

2010-09-05T08:07:00.000-07:00

Closing in on 100 days on NV - huge progress in some areas, some not as much in others, but definitely worth continuing on it.

Generally pretty good end to the week, again a couple of "meltdowns," seems to be mostly mid-day at lunchtime (tired? hungry? noise? Josh says the noise makes him "nerwous") and on Thursday getting on the bus after school - don't remember if it was raining that day but it was definitely hot and humid, tired? (Gramma and Boompah surprised us on Thursday - they came by with YooHoo for Josh, and Gramma and I sat outside to wait for the bus - Josh got off beautifully) Otherwise, Josh is working very hard, is attentive, is needing very few (if any) prompts on pretty much every day. He is amazingly good at math, of all things! You consider math is a pretty abstract subject, I'm sure they're using tactile for math but, gotta say, I'm surprised at how much he likes it and is so good at it. It's still very elementary math - no algebra or trig (!) - which actually is a good thing since I stink at math and would never be able to help him with homework! LOL! I sure wish the reading would come though. And, he's doing a great job getting on the bus in the a.m. and off at home - he's coming down the stairs all on his own, keeping his eyes open (always a good thing!), and getting right up. Bonnie, the afternoon driver, said she is running out of stickers for him (reward system for getting up/off the right way - her concern has been that, in an emergency, he would not be able to get off - I'm thinking if there's an emergency, even if he's doing a good job daily, he is going to have a very hard time getting off a bus - thank heavens no emergencies have arisen and I pray they don't!). The note on Friday also said that one of the aides, the gentleman named Frank, came up with a really fun system for Josh to complete "tasks" - the parts of the tasks are placed around the classroom and Josh has to go around putting elements of the tasks in a container - he really likes it (maybe associates it with collecting garbage!). Smart man, Frank!

Had a rough day yesterday, Day 97. It seems there is often one day of the weekend that is hard - could be he's just tired from the week and needs to have a "lazy day." But, when you've got things to do, places to be, and people to meet, arranging the weekend for whichever day might be lazy is difficult. Josh was very resistent to getting up and going, resistent to getting in the car (we had planned on going to Elmhurst for train watching and a picnic - I made a big picnic lunch and, as he did once before, would not get up to go - so he lost out on it; after Elmhurst we were going to go to the office where he could help me pack up a lot of his stuff in anticipation of the office move in October - Josh wound up spending the day at Gramma and Boompah's where, of course, he was terrific, and I wound up getting a lot of work done at the office), was resistent to coming back home after Gramma's, but he was great about going up to bed.

This a.m., Day 98, I got up a little early and had some quiet time downstairs, couple cups of coffee. Josh woke up, got into the bathroom on his own, and we got washed up/dressed. He's been fantastic - I had left my coffee cup on the end table and he brought it to me in the kitchen to wash, he ate like a pig (2 pieces toast with PBJ and an egg, and two cups of NV!), and he's very excited about a neighbor who will be doing some culvert work in front of our house and a friend who may come by for a visit later in the day - he keeps running to the door to see if our friend is here (don't even know for sure whether coming or not!). I've got to mow the lawn (finally!) and Josh is talking about taking the lawn mower for a walk - don't know if he'll be so gung ho on that once our neighbor comes with the bucket/digger! We'll see how the noise of the work is going to affect him. I'd take him out and about rather than staying home but don't know if/when our friend is coming over, and our neighbor might need my help in digging the culvert and laying the piping. Big job for our neighbor - very nice guy, postal worker, 11 grandchildren - all boys! He likes Josh a lot and Josh really likes him, mainly because he's a "mail guy" and he had a great dog, Kodiak (Kodie-Bear) (unfortunately, Kodie was put down the other day - very old for his breed and weight, was falling apart and not making it on stairs or outside, very sad, he was a great dog).

So, on with Day 98, whatever this day will hold! No school tomorrow (Labor Day) so Gramma and Boompah will be kidsitting as I need to get into the office for the day (so much for Labor Day for me!). Happy Labor Day to all!

Day 94 into Day 95

2010-09-02T05:12:00.000-07:00

Mixed bag yesterday, although Emily's note was that, except for one sensory issue, Josh worked hard and had a really good day at school. The not so great - a girl was getting her lunch card and got really close into Josh's space - he pulled her hair (actually got some hair in his hand!). The girl was OK, and the note was the she doesn't understand too much anyhow. Emily said they didn't give Josh a time out or punishment because they all saw what happened and knew that it was a sensory response to her coming so close. I know she was at Josh's birthday party and she does like to come in close to everyone. But, I sent a note back saying how can we work on this with Josh. Is there a desensitization that we can work on, etc.? Josh also seems to be having a hard time around lunchtime - a couple of meltdowns then. Wonder if he's hungry, thirsty, tired, whatever? The rest of the day he works hard, participates (yeah!), works well with the staff and sometimes peers, gets praise, puts forth effort, etc. So, what is happening around lunchtime?...

The OT session yesterday was canceled because of the insurance snafu - sure hope the speech eval next Wed. isn't canceled as well. The OT is trying to work out the snafu, so hopefully it will be and Josh can continue with the therapies - working on that space issue with OT would be good.

Josh had a great day with buses again - right on, no overload at all in the a.m., and right off with no overload or anything coming home! Yeah!! We goofed around for a little bit and I was famished so we ate early and Josh fell asleep early - never a good thing since he was up early this a.m. (Day 95).

Can't wait for the weather to change - this humid rainy stuff is exhausting! So, into Day 95!

Day 93 into Day 94

2010-09-01T03:37:00.000-07:00

Whoo Hoo!!!! Josh went in the pool at SEDOM!!!! And, he had a good time!!!! Emily was with him the whole time and the note (and an email from her) was that he really enjoyed being in the pool! YEAH!!!! He had to be prompted a couple of times and he did have sensory overload afterward when they finished in the pool and went on to the Home Living Center, though, but, hey, baby steps! And, the overload could have been in anticipation of the HLC - they sometimes use a mixer in there to make foods and the mixer always gets him (the noise). But YEAH! on the pool!

The staff have added a new phrase to the Josh-spectrum of behaviors - meltdown. They are defining it as somewhere between a sensory overload (when he just lays down and won't move - but not a PNES) and being a poop (sort of normal 12yo pain in the neck kind of thing) - he will bat at staff members during a meltdown (as if he is telling them to just leave him alone, I guess), and he had one of those yesterday. But, otherwise, he had a pretty good day.

Josh also did really well with the buses yesterday (except one coming from the HLC back to school). In the a.m., I went to put his backpack on the bus, turned around, and there he was just walking up to the bus - no overload, no PNES, just walking to the bus! He did have a very short overload once he sat down in his seat, but it lasted only about 30 seconds. Coming home, Bonnie (the driver) thought putting him in the second seat would work better than the front seat (there's a little metal triangular brace at the bottom of the divider between the seat and the stairs - she started thinking that piece makes it hard for him to come out of the seat -fear of tripping maybe). Sure enough, he got out without any hesitation or problem. Smart woman.

We had a visitor yesterday also - the "facilitator" from the Mental Health Board came to do paperwork and meet us for the wraparound services. He participated for about 45 minutes and then, when we actually had to do paperwork, he went to watch a movie (and fell asleep!). During the meeting, he held her hand several times - a sign he likes her and trusts her (Yeah!). She's very nice, a former special ed teacher who also has a now-grown-up kid who had special needs (LD, BD, ED). The wraparound services will be interesting (will write more on that some other day).

So, with a few exceptions, generally a really good day for Josh! Yeah!!

On into Day 94!

Day 92 into 93

2010-08-31T03:42:00.001-07:00

Josh is participating at school!! Day 92 note home said he was participating in several activities - not just "compliant" but participating! Yeah!!! Emily's system of communication is great - she has a chart with, on one side, the schedule for the day and on the other side is a list of behaviors all the kids exhibit with each one numbered. She just plugs in the number by the activity, and then adds notes as needed. This was the first time she put the number for participated! Whoo hoo!!! He also had a couple of "meltdowns" - not sure where that fits in on the Josh-spectrum
(epileptic seizure - PNES - vasovagel episode - sensory overload - just being a poophead), and he made himself throw-up at lunchtime (lovely), but otherwise a good day!

Josh got home and, instead of just laying down, he took a little bit of time getting off the bus but not an inordinate amount of time, came in, and we had to run an errand. He just got in the car and off we went. Had a great dinner and he was sound asleep on the couch by 8:00. Went up to bed with no problem at 9:00 (we both went to bed then - I was wiped!).

Had a really long conversation with the school nurse. The nurse from last year is on a different IEP team so this one wanted to update and get a bit more info on Josh and his various conditions. At the end of the conversation, she said she was really impressed with how I'm so on top of things, know so much about Josh in all respects, know what Josh needs and sees to it that he is getting them. She said she was so appreciative of the conversation and all the info. I said thank you but aren't most parents like that and she said, unfortunately, no. That most parents she deals with simply can't handle all the issues, the therapies, and don't have the knowledge of their child's conditions, so this was "refreshing." How sad, and here I thought I was not doing enough! She also said, and this was great to hear, that she has observed Josh a few times and knows him - she thinks he is generally a very happy kid, upbeat, funny, and she is seeing progress - movement in the "right" direction! Yeah!!!! We talked a lot, also, about a safety plan for him (especially with the vision stuff going on) and the seizure plan. She would like to get the school psychologist more involved in the safety plan since that involves in behaviors that we are working on with Dr. Straube. She seems pretty good - sure hope they don't switch nurses now!

Today, Day 93, Josh's class is going to SEDOM for the day. He's very excited to be going, and to see old friends from there. I hope the day goes well. Emily said they will try to get him into the pool (or at least into his bathing suit!). I suggested they use a seat in the shower room since he is soooo nervous about being in the shower/locker room/pool area (since that's where he wiped out and broke the femur last Fall). She said until he is more comfortable, she will personally walk him through the locker room/shower and, yes, they will try to have a seat for him in the shower - good idea.

So, we'll see how the day goes! Into Day 93!

Day 87 through 90 into Day 92

2010-08-30T03:49:00.000-07:00

Did it again - was so busy that I let writing here slide. Josh's week, Days 87 through 89 went fairly well at school - had a few PNES, particularly on Friday (Day 89) but he is working well and generally is "compliant" with everyone. There was even a notation on one of the days that he was "kind" to a peer - don't know what he did but that was good to see! We had a session with Dr. Straube on Friday - Josh talked a lot, talked about emotions he was feeling in different circumstances (that's new! talking about emotions is a new thing since being on NV), we talked about relaxation techniques, Doc said he would like to get to the point where he understands Josh enough to be able to talk without me in the room to interpret (he'll get there), but then wouldn't get up to leave. He laid down on the floor and we tried every technique to get him up and moving. He finally had a little overload (doc was doing "active ignoring" and was cleaning his office up, took out the vacuum and into the overload Josh went) and then got up only to have a full blown PNES in the doc's hallway when he saw the cord to the vacuum (Doc had put the vacuum into the bathroom but the cord was visible). Doc saw the whole progression into, through, and after the PNES. Josh got right up afterward (as usual) and walked out of the office. Doc was amazed - at the door, Doc said Josh certainly is a complex kid (do ya think??). Doc has earned Josh's trust, though. Josh asked the Doc to help him with his seatbelt - he does that when he trusts someone and likes them - it puts the person in really close proximity so it's clear Josh trusts him, allowing him to get in so physically close.

Gramma and Boompa kidsat Sat. a.m. (I had to go to the office to put in time to exchange for the coming week as I will still be getting Josh off the bus - haven't heard from Stephanie yet). Josh did really well, got up all on his own to pee, only one PNES right before dinner. Sunday was the same (Day 91). We were going to train watch in Elmhurst but Josh, after I had made the lunches to go for a picnic, decided he didn't want to go. I was a little peeved but he was clearly tired - he fell asleep almost immediately after he said he didn't want to go. So we wound up having a quiet day at home - good thing, it was soooo hot and humid, a picnic would have been horrible! He snoozed for awhile, then he was playing around and I was actually getting housecleaning done (yeah!) and laundry.

Into Day 92. Sending his bathing suit and towel to school for the pool at SEDOM tomorrow. Emily, his teacher, said she would personally work with him throughout the pool experience (since he's so nervous about the shower and pool there after what happened last year with the fall and breaking his leg). That will be interesting (?!?). So, on with Day 92! (and I'll try to actually write every day again!)

Day 86 into Day 87

2010-08-25T03:46:00.000-07:00

Got the first call of the school year yesterday morning, Day 86. Josh had a non-epileptic seizure in the bathroom, had been complaining of stomachache, and then pooped. They took him to the nurse, temp was fine and he was recovering fine. I spoke with Emily, who didn't feel it necessary to come get him (neither did I). I explained the vasovagel episodes and said it sounded like that was what happened, especially with the pooping aspect of it. Sent a bunch of info to Emily about vasovagel also (just something copied from wikipedia - it was the easiest to understand). Had a good day after that - worked well with adults and kids in a group activity (yeah!), worked well with all school work.

Some sad news about Francis, though. She had texted me that she was on her way back from Ottawa - she had to do paperwork to place her grandmother into hospice - she has taken a turn for the worse and it looks like she is not expected to survive much longer from her cancer. Very sad for Francis. So, she will be unable to do kidcare for a period of time - not sure how long at this point. She will be moving down to Ottawa for the time being to care for her mom (who has MS and has been caring for the grandma) and grandma until the end. I felt so badly for her. She was more concerned about leaving me/Josh without care and she was worrying about my work situation. Told her she needs to do what is right for her and her family, we will be able to work things out, and she should just take care of her family. I feel so sad for her, she was so upset yesterday telling me all this. She kept recounting stories of her grandma. So sad.. I know that her grandma has gone through so much over the last year or so. I just pray that she can go easily now and have some peace.

Josh and I talked a lot about Francis being so sad (she was crying quite a bit during our talk and Josh was upset that she was so sad). He understands that her grandma is really sick and I tried to explain that her grandma would be going away and Francis would not be able to see her anymore. Not sure if he really understands why, but he related it to not seeing friends from Ottawa and how that made him sad. That's OK for now...

So, into Day 87. OT today this morning.

Days 83 into 86

2010-08-24T03:38:00.000-07:00

Josh was with Peter on Days 83 into 84 - said things went really well over the weekend. Josh met up with a boy at their hotel - the boy had CP and was in a chair - Josh hung out with him, I guess. Josh said the boy's mom took the boy out walking in his chair and Josh, I think, went with for a little bit - at least I think that's what Josh meant!?! Josh didn't get all the NV over the weekend - P said he gave him 2 servings on Saturday and I don't think any on Sunday. So, when we got home on Sunday (Day 84), I gave him some, and saved some for Monday a.m.

Rough a.m. on Monday, Day 85. Josh just didn't want to get up for school. Eventually he did, but he wound up taking his breakfast to school, and we had enough time to just get washed/dressed/and out the door for the bus. The note home from school said he had an excellent morning - right off the bus and into the building! Worked well all day (really likes math! - had some addition problems that came home - got them all correct!), but when they went outside after lunch, he just didn't want to come in again! Took quite a long time apparently. Worked with OT three times yesterday - looks like he was attending for long periods of time (although he threw something at one point :-( ) And, he didn't want to eat lunch at school so by the time he got home, Francis said he was really hungry! (Josh got off the bus and into the house without any problem also!) She gave him a sandwich and cookies (looked like a lot of cookies!) and he ate a full dinner around 7! The shipment of NV came (yeah!) so he had a serving of that as well. Josh was also really tired (as was I!), so we both took a rest just before dinner - it helps so much when he has snoozed even just a little bit! Before the snooze he was crabby, wouldn't do anything. After the snooze (and it was only about a 1/2 hour snooze), he was up, going to pee, came to the table for dinner, ate a lot, and was just so much more pleasant!

We had a surprise visit from Gramma Bev and Boompah - they found the Buckaroo game while they were out and about yesterday, and they wanted to give it to Josh for a back-to-school present. They got here just as we were finishing dinner. Then a friend dropped in unexpectedly. Josh fell asleep while our friend was here and, as usual, when it was time to go upstairs around 9, I woke him, he went right up, peed, and went right into bed, fell back asleep immediately.

Maybe the tiredness is from the lack of NV over the weekend and into yesterday (maybe just Monday stuff? who knows!!??) - sure hope he's not getting that cold back! So, into Day 86 with full NV dosages!

Day 82

2010-08-21T16:16:00.000-07:00

Day 82 - picture day! Josh did so well walking out of the house in the a.m. to get on the bus - no laying down, no problems. In fact, he came outside so well, right into the car to wait for the bus, that we had extra time! We wound up driving around watching the garbage trucks - oooohhh. Unfortunately, he did have an overload just as the bus pulled up, but he pulled himself out of it quickly and walked right up on the bus, said thank you to the driver (I think for waiting), and then said "good morming." The note that came home - had just a great day and was "awesome" for the pictures! Can't wait to see them now! Josh was going to his father for a weekend and was happy to be going, but slow to get moving. We finally got out the door with all his supplies but no time to grab something to eat - was going to eat at the "kid swap" spot but Peter drove up just as we did. So, I'm on my own this weekend and will see Josh tomorrow (Sunday, Day 84).

Didn't get the shipment of NV yet and there isn't enough for into Monday - (had sent NV with Josh to his father) - hopefully it will come on Monday (Day 85)!

Day 80 and 81

2010-08-19T18:30:00.000-07:00

What a weird day yesterday, Day 80, turned out to be. We both took it easy, taking our time doing all the "day before school" stuff - we did make peanut butter cookies, we made a homemade no-bake granola/energy bar thing, I did the laundry, Josh did a lot of writing in his notebooks and playing with his train. I also increased his fluid intake as per the neurodoc/primary doc's nurse. Well, Josh did really well with getting up to pee - a couple of PNES though preceded the getting up and both times he wound up, afterward, pooping up a storm! Extra liquid not only gets a person to pee but, oh yeah, moves other things along as well! ;-o!! By dinner time things had moved along quite a lot! But Josh said he felt fine, just "poopy!" So much poop, in fact (sorry, this is gross), there was some in his depends which he felt the need to tell me, but only after he got some on his foot and decided to walk into the dining room to tell me - leaving little brown tracks along the way. YUCK!!!! So, I got him cleaned up and then washed the floor, only to have the cats throw up later after they ate their catfood! Like I said, what a weird day!! Josh wound up falling asleep on the couch while I was playing piano (he asked me to "play music, sing Mommy!" - always happy to do that!), and went up without any problem after a little while.

Today, Day 81, was the first day back to school and Josh was really excited and nervous. He had a short PNES right before going out to the bus but, after it was over, he walked out, walked around the driveway (instead of sitting down in the car to wait), and got right on the bus. He's the only kid on his bus, unfortunately. The other kid who was supposed to be on there dropped the school or program, something like that, and would not be taking the bus. Don't know if there will be changes. Off Josh went and, of course, wuzzy me, cried all the way to work.

His day went pretty well - was "compliant" and worked well - especially in math (go figure!!). The note from school was that he got off the bus quickly and well, but then took quite a bit of time to actually get into the building. A little bit of time to get out of the classroom after lunch also, but otherwise a "pretty good" first day back. Yeah!! Getting off the bus took about 8-10 minutes, Francis was here and we had the chair set up for him on the driveway - unfortunately he missed it as he sat down and, PLOP!, down he went onto the driveway in a little overload (not a PNES). He had not snoozed at school so was kind of tuckered but wound up talking to Francis for about an hour while I ran a grocery errand. She left and, as dinner was cooking, Josh snoozed a little. Woke to ate, and now is just taking it easy before bed. Good day all in all.

Tomorrow, Day 82, is picture day at school! Whoo hoo!

Day 79 into Day 80

2010-08-18T06:15:00.000-07:00

The OT session yesterday, Day 79, went pretty darn well! Josh had a PNES getting out of the car, but after that he was rarin' to go! Dana was right there, he went right in, and they worked hard for a full hour. She said they worked on fine motor stuff - she was working with Josh on buttoning - she would pinch the slit open and he would slide the button through - he doesn't have the motor coordination yet to do both aspects of buttoning. They also worked on writing his name and holding the marker correctly - she said it was a good idea for me to have gotten Josh the triangular crayons for school supplies - they promote correct hand grip and, voila, they don't roll off the table or surface! She said the J was looking good and the O is really good; S is a little dicey and H looks like railroad tracks (still!). She said there was one hitting thing but she said it was very slight, very light, and he pulled back as he started - she said she clearly got into his space too much.

I mentioned to Dana the dinner plate picture - don't recall if I wrote about it yesterday. We were sitting at dinner on Monday night - meatloaf, he had sweet potato, and we had zucchini - very colorful dinner! So, I took his spiral notebook and said let's draw a picture of dinner since it just looked so colorful! We pulled out all the colors of markers that matched the food colors, I drew the circle for the plate (in blue, since that's the color on the plate that was exposed), and he colored in the spaces for the different foods. When he was done, and the notebook was sitting right next to his right elbow, he said, "Too much, too close!" and he got up and moved the notebook away. Josh always eats with his plate way far away from him - sometimes in the middle of the table. I always thought it was the smell of the food overwhelming him, and maybe the colors. But, when I mentioned the notebook thing to Dana, she said it would seem the colors are overwhelming him more. She said it was very interesting and she would work with using multi-colors when they do fine motor/writing work - to see if that is part of what is going on.

After the session, we got home and Gramma and Boompah were there already (they were kidsitting for the afternoon). I had the chance to mow the lawn (yeah! it really needed it!), and then zoomed off to work.

I also called the neurodoc yesterday (while I was at the office) to ask about Josh seeing the "blue light" and getting the headaches. I also mentioned the getting up thing - when Josh gets up from laying or sitting down for a long time (except in the a.m. when he stretches in bed before getting up), he will quite often (if not always) get up, stop for a second, and plop back down as he puts his head in his hands and then just sits again - yesterday and Monday Josh said he had "wobbly eyes" at those times and that was also when he saw the "blue light" and got the headache. Doc asked how often it happens and I said almost all the time except in the a.m. or in the evening after he's snoozed a bit and then gets up slowly to go upstairs. I was concerned that it was a reaction to the Keppra or some other type of seizure going on (with the blue light he says he sees and the headache, I was worrying about temporal lobe absence seizures since these "episodes" last a very short time and he doesn't lose consciousness or anything). Doc said he doesn't think it is related to epilepsy at all - sounds more orthostatic - blood pressure drops/vasovagel syncope. Well, I know all about that since I've got it - and I never made that connection with what was happening to Josh! So, doc said the keep a journal for the next two weeks, have him stretch a bit before getting up to get the blood flowing, and give him 4 more glasses of liquid a day (this a.m., I realized he probably isn't getting enough liquid to counter any possible vasovagel effect so I'll up the liquid! there is liquid in what we eat, especially the applesauce Josh has, but I think maybe he needs more actual liquid - juice, water, etc.). I called Josh's primary doc to let him know (doc is on vacation) and the nurse I spoke with agreed that keeping the journal and upping the liquid is the way to go (she said gatorade or something like that would be good as well - watered down). If things get better and these "episodes" lessen, then we're looking in the right direction, if not then we'll go from there. (nurse also said the blood tests Josh went for a couple of weeks ago are perfectly normal - yeah!) So, even though he's going through this "I don't want to go in the bathroom to pee" thing, liquid will increase and hopefully he'll feel better upon rising - maybe that's what is prompting the PNES when he has to get up or get out of the car after sitting for awhile (and so on) - if he's dizzy he's probably nervous about getting up and particularly going to pee - who knows???

Gramma and Boompah said he did really well with them - played with Gramma and the train, worked at the dining room table with his notebooks for a really long time, had a good lunch, slept for a bit. When I got home, they were in the living room just chatting. They said he had another PNES for no apparent reason - he was laying and watching a Blue's Clues, they were just hanging, and Dad said he looked over and Josh was going into a PNES. Mom said, though, that right after, he said his tummy hurt - and then he went in to pee and poop (again) and felt better. Now that I'm thinking about it, vasovagel can cause dizziness when pooping as well! Hhhmmm... I will need to make the new charts for the bathroom and the "laying down thing" - he has finished the second chart already (first chart took almost a month for the bathroom, this one only took two weeks - progress!!). Josh is still staying up later - he didn't snooze off until almost 9:00 - got him upstairs without any problem (and no dizziness) at around 9:30.

So, we're into Day 80 - the day before school starts! I've taken today as a vacation day so I can make some baked goods for lunches, maybe make some homemade granola or energy bars, we'll organize his backpack and get it ready, maybe look for some trains later in the day, do the laundry and get all his clothes together (extras to take to school) - all the day before school kind of things! On into the day!

Correction on Day 75

2010-08-17T04:52:00.000-07:00

Oops! I guess it was on Day 74 that Stephanie called and came by! Friday must have been pretty uneventful! That's what I get for not writing in here every day!! LOL!!

Days 75 into Day 79

2010-08-17T04:28:00.000-07:00

Friday, Day 75, I was getting Josh up and he wanted me to read to him. He chose The Little Engine That Could so I started reading when the phone rang. Stephanie was calling to say she was fine and wanted to come by. She wanted to reassure Josh she was fine and make sure they were still buds. We talked on the phone and I went back in to Josh to tell him. The minute I mentioned Stephanie coming over he went into a PNES. When it was over, he sobbed and sobbed for about 15 minutes! He kept repeating "Stephanie hurt, Stephanie hit, I sorry." In the past, I always knew that Josh knew he wasn't supposed to hit people but this was the first time he actually, I think, understood the consequences of his hitting and maybe really felt guilty about it. NV? He eventually stopped and we got up and going. Stephanie came by in the afternoon and they played for about four hours - she even gave him lunch. By the time she left, they were best buds again and she said she still wanted to do kidcare. I had asked Stephnie if she saw any difference between Josh at camp and at home - definitely. She said he was so relaxed here at home, much more active. She said camp probably was a bit hard with all the other kids and the noises they make - home is much more calming and quiet.

Had the second session with behavioral psych. Josh had a very short PNES getting out of the car into the office but had a good session until toward the end - he seemed to be getting tired. It took much less time to get out of the office - no laying down but he did sit down (smart kid - I told him beforehand that no hitting, no laying down and we could go see trains - well, he didn't lay down!). Doc had good suggestions on the sticker chart thing - I brought the chart we've been doing for peeing and he liked it, but suggested doing another chart or another "track" on the same chart for the laying down thing. Josh is almost done already with the second "pee in the potty" chart so the next one will have two tracks.

Terrible storms Friday night.

Saturday, Day 76, quiet day. We were nothing but couch potatoes most of the day. Josh played with his toys, watched a little TV, we both slept a lot - I think still fighting off the colds we've had. Josh has been having what I think are absence seizures - probably due to the cold - he says he sees a blue light and his head hurts. Must call neurodoc about this.

Sunday, Day 77, I was going to try to take Josh to see Thomas the Engine at Union but decided the weather would not be our friend and the crowds definitely not. So we went to West Chicago to do lunch picnic and watch trains - good train day! Otherwise, very quiet, uneventful day! Only one PNES although Josh said he did see the "blue light" a few times.

Monday, Day 78, Stephanie came to do kidcare in the a.m. Josh was so happy to see her! I went off to the office for the morning and worked from home in the afternoon. There was some street work in the a.m. but Stephanie said they couldn't hear it at all. Weird, I left with the door to the sunroom open, get some fresh air into the house. When I came home, Stephanie said they couldn't hear the street work but Josh said the birds were too loud so they had closed the door. Hhmm. She said he had one absence seizure that led into a PNES - just before getting up to eat, I think it was. She also said he actually went in to pee - something she hadn't been able to get him to do during camp. They played with his train, some other toys, watched a little bit of an AirBud movie. When I got home we all sat around talking for a bit and then Stephanie left. I could see Josh was really tired and I wanted to check his depends - had a feeling that with the PNES he had while she was here, they were undoubtedly wet. He got really mad and grabbed my dress. I just looked at him and asked why he was mad. He didn't respond but went down on the floor - no PNES but fell sound asleep within minutes. When he woke up, he was in a totally different mood, happy, laughing, went in to pee, and we had a nice quiet evening.

Today, Day 79, Josh starts OT through Good Shepherd. I hear him moving about upstairs to, I guess it's in to Day 79!

Day 73 and 74

2010-08-12T19:22:00.000-07:00

Yesterday, Day 73, was a really good day! Gramma and Boompah kidsat in the a.m. - I was expecting a client call so had to be at the office. I wound up leaving the office at around 1:00 or so, and stopped to get school supplies and other stuff. I got home around 2:30. Mom and Dad said he was great all morning - even went to pee a couple of times. Interesting, they said usually he asks Gramma to come to the bathroom with him, but yesterday he asked Boompah - hhmmm... maybe a guy thing!?! They did say they were in the living room (I think) and Josh was on the floor. They were just talking and, all of a sudden and without any apparent reason, he just went into a PNES - they couldn't figure out what might have precipitated it.

When I got home, he was just eating lunch so we sat and talked while he ate - we talked about what happened with Stephanie on Tuesday. As soon as I started the conversation, he reached over to knock his food around but stopped himself. I told him he didn't need to be angry, and he didn't need to throw his food, we were just talking and I wanted to tell him that Stephanie was feeling much better (she had called me) and was concerned about him. We talked some more about not using his hands when people are too close but using words instead - we practiced what to say, and then he finished lunch. We played with toys, we had both of his remote control toys out, set up a ramp/track thing, and were running them over the ramp and crashing them into each other. Even Boompah was having fun with it all!

The site director from camp called while we were playing, and said that they were unable to find anyone that Josh knew who could be his aide for the last two days of camp. Since it would be pretty much stressful for him, and the other campers and counselors, they suggested I find other arrangements for him for the last two days. Oh well, it was worth the try, I guess, for the therapeutic riding. He did like the horses and apparently showed no fear of them - enough to have petted the one horse - so I think I'll look into it for the school year with me going with him. They wanted to make sure I understood that they by no means were looking at this as something behavioral or something that was purposefully done by Josh, and they really hoped that I would sign him up for other things during the year (Bravehearts?). I will. I'm not happy with the Special Olympics situation through them - they have much higher functioning teams so I'm going to need to find some other SO place for Josh - he really wants to go to the "big gym with the garage doors!" Anyhow, I will be working from home the next few days.

Aunt Shirley and Rosie came for dinner - pizza party! Josh wound up having grilled cheese and then went to watch a movie while we sat around and talked. He fell asleep on the couch and, when it was time to go up, went up without any problem.

This morning, Day 74, we were both up early - normal time but early. Since neither one of us was going anywhere, I figured we could sleep some more. So I got Josh up to pee, and then we both went back to sleep - until 8:00! Whoo hoo!! Josh was taking his time getting up so I had my coffee and then went back up to get him up and going. He wanted me to read him a book so I started to read to him and the phone rang - Stephanie, to say she was feeling much better and that she wanted to come by to make sure Josh understood she was OK, not mad, and they were still buds. After the call, I went back to tell Josh, and the minute I mentioned that Stephanie was feeling better and wanted to come over, he went into a PNES - very interesting. After it ended (and it was a longer one), he was just sobbing and saying he was sorry, that he was sad, and that "Stephanie OK?" We were just hugging and I was telling him she was fine and he would see she was fine when she came over. He went into the bathroom to pee, but he was still just sobbing about "I sorry" and "Stephanie OK?" I've never seen him react this way to incidents when he has hit someone - clearly understanding he caused "a hurt" and was obviously feeling guilty - something new since on NV. He always, I think, understood he shouldn't do the hitting, but this was something more. I know that on our vacation, when he threw the milk in the car, he was clearly repentent - he was holding Gramma's hand and staying silent. But even this was more - much more emotionally.

He finally calmed down and actually took a shower. Stephanie got here around noon and she played with him - making sure she got as close as he could stand, asking if she was too close, etc. Josh asked that Stephanie help him with his lunch, and then they played more. We all put the ABC floor puzzle together, and Josh was just talking up a storm. At one point, Stephanie told me that, after the hitting incident, he kept leaning in to give her kisses and hugs, and held her hand the whole ride back to the pick-up site. She also said she thinks the camp folks were mostly at fault - they should have never put that many campers (with the needs they all had) in the van they were riding - it should have been a bus, not a van, and she said no one helped her with Josh - they saw that she was having a rough moment with him but no one helped her or tried to hold Josh's hands. She said she was wrong for moving in too close without warning him, especially when he was so tired, hot, not feeling well, etc., but someone should have helped her. She, in no way, blames Josh for any of it, understands what and how it happened, and really wants to kidsit more for him, hopefully having him in camp next year also. She also said her mother, who is a head nurse at some schools in the county, knows the behavioral psychologist we're seeing and she said he is fantastic - so Stephanie hopes (as do I) that things will be much, much better by next summer (if not long before then!).

In addition to all that, Josh has earned four stickers today - going to pee in the little bathroom all on his own, no prompting for two of the times! Whoo hoo!!

Funny thing happened (hhhmm... might not be so funny in the future!) - this has happened twice now in the last three days. Josh has never liked to talk on the telephone - he will push the phone away from his ear (as I hold it) after saying maybe two things to whoever is on the other end of the line. Two times now, though, he has picked up the phone and just started pressing numbers! The first time, he said he was calling Gramma to ask her to come over. Today, he was pressing numbers to call Francis to find out if she will be coming over or if he could go to her house. Someday I'm going to look at my phone bill and wonder who was called in Irkutsk or something!! LOL! Anyhow, we called Francis and he left a message for her on her voicemail. We also did an email to Aunt Cathy, and got an email back from the one he sent two days ago to his old teacher down in Ottawa, Amy.

He's falling asleep on the couch in the family room now. I'm debating whether to just let him sleep down here tonight or wake him in a bit and get him upstairs - I want to watch some of the meteor shower and, with the skylights in the family room, I could have a fairly good view just by laying on the floor! I don't know, we'll see - I could see some of the meteor shower from my bedroom window, too!

So, lots of emotions, actually asking for me to read a book to him, making phone calls and talking on the phone, and earning seven or eight stickers just in the last two days! Very interesting couple of days!

Day 72 addendum

2010-08-10T17:29:00.000-07:00

OK, not so good a day. I just received a call from the camp site director. Apparently Stephanie minimized the hitting incident with Josh/her. The site director said Stephanie told her she wasn't feeling well so they took her over to an immediate care facility - they didn't do any x-rays or anything but the doc said she may have a very slight concussion - Stephanie has had concussions before so she sort of knew that might be the case now. She will not be able to come to work tomorrow, so the director asked that I make other arrangements for Josh tomorrow. They will try to figure something out for the rest of the week, but they will see what happens. The site director said she definitely wanted me to know that they in no way think Josh did this purposefully, he loves Stephanie, but it is just part of his conditions. She said they have kids hit personnel all the time, and some with much more serious consequences - it's just the nature of the people they work with. I told her in a weird way, the was a relief to hear, but I was very concerned about Stephanie. Two minutes later, Stephanie called and said she was really just fine and wanted to come to work but the site director said no. Stephanie was more concerned about not having said good-bye to Josh, and about me being able to handle arrangements for him in the event he cannot go back to the camp. I just broke down crying, I was so worried about her! She said she goes back for a follow-up and will call me to let me know how she is.

I feel just awful!

Day 72

2010-08-10T17:01:00.000-07:00

Mixed, but good, bag today! Since Josh didn't go to camp at Bravehearts yesterday, I was concerned about how he'd do today. Thank goodness Stephanie was there! Josh rode in a 15-person van (no bus) and Stephanie sat next to him - it was hard getting him up into the van simply because of the steps but he did it! She said he did a good job all morning - he didn't ride the horses today and he wouldn't brush them, but he did pet one horse, Ben, who was, as Josh said, "brown and white and gentle." Apparently, he did just fine at the stables. They went to the pool afterward - incredibly hot, humid, and there he was in long pants from the stables. He wouldn't let Stephanie change him into shorts so they just rolled up the pants above his knees (she said he would be OK coming in shorts tomorrow). He sat on the edge of the pool, splashing everyone. He did pull a little girl's hair, but she was fine and said she understood. Stephanie and Chris, the van driver, said Josh was soaking! His pants clearly dried during the rest of the afternoon - he was kicking back on a chaise lounge, I guess, and just soaking in the rays! His shirt and beach towel are wet, his orange little towel got tossed into the pool when they were playing, but he had a good time! Stephanie said he did hit her twice - once was "her fault," she said, because she didn't warn him she was reaching over to do his seatbelt. Don't know what happened the second time but they made up. He had only one PNES during the day (once before leaving the house also), a couple of simple overloads, but several absence seizures - he's still fighting the cold we both have so I think that is playing into that. I'm hoping they lessen/go away once the cold is completely gone.

Josh got off the van fine - a little nervous and Stephanie had the chair all ready for him so he could regroup. The stairs are tricky so whoever is getting him on/off will have to be careful about that - the stairs are narrow, there are three of them, and then his seat (or the ground, whichever way you are heading). Once he regrouped, he got right into the car and started yacking away about his day! We got home and, boy, was he thirsty! He had a YooHoo, the NV, and white grape juice! Plus, he had a big dinner, dictated an email to send to an old friend, and now he has crashed on the couch - snoring away - and it's only 7:00!

Good day, overall! Hope tomorrow he uses a brush on the horse, or at least pets them more. I really don't expect him to get on the horse within this week, but if he could get used to being around them some, perhaps continuing with Bravehearts into the school year could be beneficial for him - eventually doing the grooming and even getting on the horse! We'll see!

Day 71 into Day 72

2010-08-10T03:48:00.000-07:00

Darn, it was a cold yesterday. Josh was coughing so much, his nose was running, sneezing, the works. So, he stayed home and I stayed home to work from home - and also dealt with the cold I caught! Even with the cold, though, Josh had a terrific day! He slept a lot and every time he woke, he went to the bathroom on his own - stayed dry all day until late in the afternoon when he had the one PNES he had yesterday - then peed. He played with his train a lot, read magazines a lot, watched some TV. When it was time for supper he initially didn't want to eat but did. After dinner I said, "Let's go up and have your cookie upstairs, then we can play some games!" He was surprised but went right up. We wound up playing with puzzles, an alphabet book, and number dominoes. He fell asleep just about right away around 7:30.

Interesting, since Sunday night, he has had a few real epileptic seizures - absence ones. After each, he said his head hurt and, for the first time since he had the initial EEG almost a year ago, said he saw "the blue light." I know that some people with epilepsy see a light or an aura prior to a seizure - so I'm figuring that's what that was. If he's up to it, there is an epilepsy support groupd meeting tonight - maybe we'll try to go. I also know that his neurodoc said colds and fever will bring on seizures so I wasn't surprised by this - he didn't have a fever but sure had the cold!

Josh hasn't coughed or sneezed all night (that soup I made yesterday was good!) so he's going to camp today, Day 72. Sure hope he has fun at Bravehearts! Looks like it is going to rain - red in the morning... I know they are supposed to go to the pool afterward but, if it rains, they will go to the library instead. Fortunately, Stephanie will be his aide on the bus and throughout the day today so I'll clue her in on all that is going on. Hoping for a good day!

On with Day 72.

Day 70 into Day 71

2010-08-09T03:49:00.000-07:00

Another great day, Day 70! Everyone came for brunch - no BBQ because of rain in the a.m. and again late in the day. But, Josh was friendly with everyone, talked to everyone, played with his train outside with Rosie for awhile (until mosquitoes got bad). Josh napped twice during the day - don't know if he's fighting a cold or if it's allergies but he was coughing some and sneezing with the watery eyes. The store brand of Claritin seemed to help so I'm leaning toward the allergies. Sure hope that's all it is - would hate to see him miss out on the Bravehearts this week. Josh had questions planned for Uncle Harry and Brad (do they have garages where they are are, etc.) and he sure asked them as soon as they both came in the door. Josh sat at the dinner table with all of us for brunch and again for dinner (ordered from Rosati's since we couldn't BBQ) - full table with food all over and he did great - ate like a pig and asked that Gramma help him! Josh even earned three stickers during the day, going to pee with minimal reminders. Went up to bed without any problem.

Today, Day 71 starts Bravehearts and, like I said, sure hope he doesn't have a cold. He's cool as a cucumber but hhhmm.... it would be such a bummer! On into Day 71!

Day 69 into 70

2010-08-08T03:16:00.000-07:00

What a great day Day 69 was! Nice, quiet Saturday. Josh wanted to eat breakfast outside so we had our oatmeal out on the sun porch. After that, Josh watched went in to pee all on his own (no reminder from me), and Blue's Clues for awhile while I mowed the lawn (was so hot, I had to stop twice to cool off!) and just tooled around the house. At lunchtime, I turned the TV off and said that was it for a long time. He wound up playing with his train a lot, doing his "recycling," even emptied the baskets into the garbage in the garage. After that, we both just crashed, napped for a bit. When Josh woke up, he went right into the bathroom, peed (although a bit late - his depends were wet), and then got a new depends that HE PUT ON ALL BY HIMSELF!!!! I supervised by just reminding him to hold where the blue line was and make sure he didn't put both feet in one hole. It took about 5 minutes, BUT HE DID IT!!!! YEAH!!! We played games after that for quite awhile, had supper, and then we watched Underdog (he was just cracking up with the flying scenes!) and then I turned on a Thomas movie that was on On Demand - he fell asleep during that. But, before he fell asleep, I looked up online when Thomas was coming to Union - next weekend - and asked him if he would want to go see Thomas even if there were a lot of people - he said yes. So, maybe we'll make a trip over to Union next weekend! When it was time to go up, he had slept on the couch for about 45 minutes, went up without any problem. He was so cute, it was taking him a little bit of time to get back to sleep. I had come back downstairs and heard him saying, "Gramma Bev, Hi Gramma Bev, Gramma Bev tomorrow." It was like he was practicing what to say to her! He got up a couple of times to play with the fan in his room, but he eventually settled back into sleep.

Yes, today is Day 70 on NV, and Gramma Bev is coming over. So is Boompah, Aunt Shirl, Rosie, Uncle Harry, Aunt Vicki, Brad, and maybe Mallory for a BBQ brunch, and for the day. Harry is heading back to Virginia today so they won't stay long. But everyone else will be here for the day - big brunch planned and then we'll do BBQ later in the day if it's not too hot out - supposed to be in the 90's and muggy - yuck. Tomorrow starts the therapeutic riding at Bravehearts - I don't want to talk about it too much today as I think it will build up his excitement and anxiety about it. Stephanie has it all planned out, though. She will be around during the school year for kidsitting on weekends if I want/need (yeah!!). I'm really excited about it, though. I think I'll give Stephanie a camera and maybe she can snap some shots of how the week goes. Then school starts! This summer has flown!

Into day 70!

Days 67, 68 and into 69

2010-08-07T05:57:00.000-07:00

Well, I was so excited when I picked Josh up at camp on Thursday, Day 67! They were outside waiting and Stephanie said I was going to be soooo thrilled - I'd have a beach towel to wash! She said Josh finally went into the swimming pool!!!! YEAH!!!!! He sat on the edge with his feet in the water. He would say, "All done, out of pool!" and then he'd start splashing around and having fun. Then he'd say, "All done, out of pool!" and start splashing around again! She said he had a great time! He did pull a little girl toward him and she got a little scared - Stephanie talked to the mom and she said the girl was fine, the girl said she was fine just a little scared but she was OK. Not sure why/how it happened but at least everyone was OK. Stephanie said Josh had only 1 PNES during the day and there seemed to be less hitting and nervousness (coincidentally (?) less heat and humidity!). YEAH!!! Besides the pool, they had gone to Lippold Park to play frisbee golf, volleyball, and mini-golf - Stephanie said he did a great job and had lots of fun! Even no laying down or anything getting on/off the bus! YEAH!!

Thursday night, though, Josh would not come upstairs to bed. I'd been thinking about this for a few days and decided who is it hurting for him to sleep downstairs - we do sleeping bag camp-outs in the family room and we sleep on the floor so what would be the big deal (except getting upstairs in the a.m. to get ready to go for the day). So I said, fine, sleep on the floor on the hospital sheet - good thing, he was drenched in the a.m. (Day 68) since he didn't/wouldn't go pee before going to sleep!

As I expected, the a.m. (Day 68) was really rough - extreme uncooperativeness getting upstairs to use the bathroom and take a shower. Lots of struggling, etc. He finally did get upstairs (good thing I left a lot of time in the a.m.!) and actually went into the shower with no problem. When I dropped him off at camp, I told Stephanie about the night before and the rough morning, said he'd probably have a marvelous day - and he did! When I picked him up early (had psychologist appointment), they were waiting out by the pool - and he had gone in the pool again! They had gone for a pontoon ride (I think at Crystal Lake) and Josh loved it! Stephanie said he got on/off the bus without any problem, on/off the boat without any problem, wore the life vest without any complaint, ate his lunch without any problem - just a marvelous day! At the beginning of the week of camp, I said to the counselors that by the end of the week, he'd be having a great time - do I know my kid or what!

We went to see the new psychologist yesterday - when we got there, Josh got out of the car just fine, walked up the curb, and then went down on the sidewalk into an overload (not a full PNES). The doc must have seen from his window because he came out and said, "This must be Josh!" I said, "Yep, and this is why we're here!" Josh got up within less than a couple of minutes and went right into the office. I like this guy, he had some good ideas on motivating Josh to get up to pee and stuff, Josh talked up a storm, the doc suggested teaching Josh more self-calming techniques that he'll hopefully get (he had PECS of the "stop, think, breath" thing like on Blue's Clues taped to his wall - so I pointed it out to Josh and reminded him that Blue says the same thing!), he has a small group of kids that do yoga in a studio next to his office and he suggested doing that (especially since Josh used to do yoga - haven't done it much lately), and we'll be doing "immersion therapy" - putting Josh into situations/settings that are anxiety-producing and working him through them - starting slowly and working into the full situation (sort of like those "fear of flying" type therapies) - doc will even come out to the car to work on getting in/out and moving through the process of coming into/out of the building. Josh did great during the session, as I said talking constantly. Doc said at one point (he and I were talking and Josh wheeled his chair - we were all sitting in wheely office chairs - directly in between us - gosh, ya think that meant something??) that Josh clearly likes being the center of attention! Uh, yep! After the session ended, though, it took Josh just about an hour to get out of the office. At first he wouldn't get out of the chair (he was having too much fun wheeling around the office), so doc wheeled him out to the waiting room (doc said he really didn't want to do that since it would reinforce the behavior - duh - but he did it anyhow), and Josh went down on the floor. He just would not get up (at least doc saw this and what I'm dealing with!). At one point, doc said, "I can see how this is stress-inducing." I chuckled and said, "That's an understatement. My doc says I need to reduce stress in my life." Doc laughed and said, "Maybe your doc needs to take Josh for a day!" Another patient came in and doc had to start that session - Josh was still on the floor. He eventually army crawled out of the office/waiting area into the hallway, then crawled the hallway out the door of the building. Unbelievable. Once we were out, I said to Josh," I'm leaving." I went and got into the car, turned the air on, and just sat for about 5-6 minutes - literally and figuratively cooling off. I went back and told Josh he needed to crawl up the stairs (there are 4-5 stairs down to the doc's office) if he's not going to get up. He turned over to crawl, went up one stair, and then just got up and walked right to the car as if nothing was wrong. Again, unbelievable. I was so angry and frustrated! As I was buckling him in he started to say something and I told him, "I'm furious and I don't want to talk to you right now." It was a very silent car ride home.

When we got home, I brought in stuff from the car and Josh tossed his gym shoes into the front seat. I told him he needed to bring his own shoes in, and I just went in the house. Within seconds, I heard his car door close, he came in the house carrying his shoes, put them down and went right to pee in the bathroom. I went to sit in the living room - when he came in to the living room I told him I was still furious and I was going to lay down on the couch, that I still didn't want to talk. He went into the family room, turned on the TV (The Nanny was on - yuck - and he didn't even ask for a Blue or train movie!), brought me his hospital sheet (I told him I don't need it, he does), and went back into the family room when I turned down the offer of the hospital sheet. I sort of dozed but kept an ear out - he wound up falling asleep. A friend came over to drop something off around 5:30 or so - when I checked on Josh, he had put the hospital sheet down perfectly on the couch (underneath his rear) and was sound asleep. He slept until almost 7:15. Very rough getting him upstairs to bed (I thought about letting him sleep downstairs again but decided I don't want him to get into that habit, and the morning had been rough getting him upstairs - didn't want a repeat) around 9:30 or so.

I know Dr. Madamala had said, in passing and in relation to these laying down things, that Josh was testing me. Don't know exactly what the testing is for - does he think if he does these things that he knows bug the heck out of me that I'll leave him, so he's testing how far he can push me? Or are these things just happening just because?? Does he think the lack of visit/communication with P is because of something Josh did (although I tell him that Daddy loves him and he is working hard and that's why he can't see Josh but he'll see him when he can - don't know what else I can tell Josh!), so he's testing me to see whether I'll "stick around" if he does things that create these problems? I tell him all the time that I love him, that I'm always going to be here no matter what he does (although I also tell him that I certainly don't like some of the things he does!) - maybe he's testing to see if that's the case? I know it's pretty sophisticated thoughts, but with the NV he's been thinking more abstractly (imagination has increased, understanding and engaging in more jokes and humor, etc.), and, what can't be forgotten, is that he is a kid first and kids of divorce do oftentimes go through this kind of thing. Maybe this is all divorce-related? Who knows?? Hopefully, working with Straube will get us all through this with minimal lasting damage!

This a.m., Day 69, I woke up a bit early and came down to have my coffee. Josh got up around 7:45 or so, went in to pee, brought some shorts downstairs, and we've just been lazing around. I want to get the lawn mowed before it rains (thought I heard thunder a minute ago) so I better get moving on that. Maybe a quiet day, maybe not - only time will tell. On, into the day!

Day 66 into Day 67

2010-08-05T03:51:00.000-07:00

Well, mixed bag yesterday. Drop off at camp went a bit slow - Josh sat in his chair next to the car for a few minutes and then, after a PNES in the chair, walked in as if nothing happened (as usual). They wound up going to see Cloudy with a Chance of Meatballs - weather yesterday was yucky - and Josh did really well during the movie. Stephanie said Josh really liked the movie - he was laughing and getting all excited the way he does - really had a good time. The bus dropped them all off at the pool after the movie (weather cleared somewhat) but, by the time they were walking back over to the park building, it had started raining - not one of Josh's favorite things. Stephanie said he went down about 6 times just walking that short distance and it took over an hour to walk because of it. Much less PNES (only 3 at camp), but going down into minor overloads - she said she would say to him, "I'm not falling for it" or things of that nature and he'd get up. Darn rain! She said there was a lot of hitting as well - not other campers but her and other counselors. I apologized a whole lot, and no one was hurt, everyone understands. He walked to the car at pick up without any problem, walked into the office without any problem, and then sat on the couch in the foyer and had a PNES. After that, he was fine. He watched a little of the DVD while I read a transcript and then asked for the sleeping bag - slept for about an hour and a half. (Tom came in and said he wanted to talk about my current case - Josh was not asleep quite yet so I said give me 5 minutes - for Josh to fall asleep - boy, do I know my kid - 5 minutes later Tom and I were talking!) He is not laying down to rest at all at camp - Stephanie says he refuses and it's just too noisy as there are kids doing a lot of banging and yelling (hhmm... could be why the overloads and PNES). When we left, we picked up dinner and had a car picnic by the Metra in Elgin - saw three trains, ate, and then headed home. Bedtime was rough - lots of uncooperativeness. I didn't let him fall asleep on the couch - I was wiped and just wanted to go up to bed - not good. For some reason, he really does need to snooze on the couch before going up - maybe muscle issues/physically tired after the day?

Forgot to write the other day that there was one thing that I have noticed (yet another!) since being on NV - no drooling! Maybe because his speech has increased (constantly - CONSTANTLY- talking!), the muscles in his face and mouth are getting stronger/more toned and the drooling has become almost nonexistent - the only time he really does any drooling now is during an overload or PNES (when everything lets loose!). I mentioned it to Stephanie on Monday and she had a surprised look and said, "wow, you're right, I 've noticed that as well!"

Gonna be a hot Day 67 but at least much less humidity, so maybe Josh will have a better day. On the upside, the number of PNES has decreased since Monday, he is participating more at camp with other campers, he is making everyone crack up. Balance...

Into Day 67!

Day 65 into Day 66

2010-08-04T03:57:00.001-07:00

Well, they wound up going to Crystal Lake Beach and canoeing on Day 65. Needless to say, Josh didn't do the canoeing - he and Stephanie stayed on shore, played, and ate lunch. He did go to the pool after they got back to camp - he even came over to the pool! Stephanie is bound and determined to at least get his feet in the pool today - yeah! She said he had several PNES (although less than yesterday, she said one was quite long) - it was very hot, very humid and his sensory stuff is so aggravated in humid/hot weather, I'm sure the weather played a part in that. He did eat some of his lunch but didn't want the sandwich (I'm bound and determined to get him eating something besides PBJs! ;-) ) Stephanie said he used the big boys bathroom at the pool (yeah!). When I picked him up, he walked out to the car without any problem, walked into the office without any problem, and then went into a doozie of a PNES on the couch in the foyer. After that he was fine, watched very little of the DVD I had for him, and then just crashed - slept for about an hour and a half. When he woke up, he was wet and I had forgotten to bring another depends so he was in just underpants and shorts by the time we went home. He came inside without any problem - only minor encouragement needed - did his lay down on the floor thing, got up and walked to the bathroom, and went down on the floor at the door to the bathroom into another PNES - peed through. Damn. He was so tired and upset, he sat on the toilet for quite awhile and then just went up to bed. At least I got his meds in him, but no dinner and no milk. Damn. I sent an email, after he went to bed, to an old friend from the old school district - I have to find out exactly what happened there - there is definitely a connection between small bathrooms and his emotional stuff, and I have to be able to help him through this. I'm hoping someone in the old district will finally tell me what, if anything, happened.

Today is Day 66 - they are supposed to go to the McHenry County Fair - it's another hot/humid day so I don't know what is going to happen. Looks like rain so far... I asked Josh yesterday if he was having fun at camp and he said yes, he even talks about some of the people so he is getting something out of it but I can't help but wonder. It is a new experience for him every day and that is a good thing. Just wish it wasn't so difficult. The people at NISRA are great, though, and they are watching out for him. Sure hope next summer is a bit easier for all.

On with Day 66!

Days 63 into Day 65

2010-08-03T04:09:00.000-07:00

Interesting things on Sunday, Day 63. We wound up having a really quiet, relaxing day - stayed home, played, watched a little TV. But, the interesting thing - I recently said to someone that when P and I were married, I had this vision of family life - the MGM musical version with kids running in and out of the house, the back door slamming, all that picturesque stuff. When Josh came along, I realized the back door slamming and kids coming over to play was not likely going to happen - a life it took a long time to let go of. Well, I was wrong, and I don't have to give that up! On Day 63, Josh and I saw new neighbors moving in and Josh said, "I have snack outside, front door." We have a little bistro table and a couple of chairs on the front porch and that's where he wanted to have snack. Sure enough, my front door was slamming! Josh was going in and out, watching the neighbors (some teenage boys, I think maybe a younger kid but not sure, a boat, etc.), the screen door was opening/closing/slamming for about an hour! He never did eat the snack that was out there but it was sure fun watching him loving going in and out! Now, for those other kids running in and out...

We wound up driving over to the Huntley Rec Center to see where camp would be - what a great park! The building is beautiful, that park is fantastic, and the waterpark over there is small but perfect for kids (especially with disabilities!)! He was pointing out spots where his van driver from camp previously would drop kids off, where she would stop and call me at the office to let me know they were on their way - he knew all about the place from the previous camp! He was like a tour guide!! What a great day!

Yesterday, Day 64, well, it was the first day of camp. Josh said he was nervous so we talked about how it's OK to be nervous, and it's perfectly understandable with something new like that. But, I reminded him that Stephanie would be with him, and he knows about the camp place so maybe the day would go well. Hhhmm.. not so much. It took him a little bit to get out of the car but he did (Stephanie actually arrived just after we did so she was there to help get him into the building). He had his chair with him and sat in the chair outside the car for a couple of minutes, had a minor overload (not a full PNES), got up, we folded up the chair, and in he went. I got no calls during the day (good!), but when I picked him up Stephanie said the day was a bit rough. He had 6 overloads but only one full-blown PNES - they walked a huge amount - all over the park, the building, they found the vacuum (of course!), he didn't do lunch well but ate some and drank his milk, was rough. But, both she and the site director said it was not unexpected, that he wasn't the only one, and with all the new people/places/things/demands on him, not to worry, it will get better. I love these people!

I got Josh back to the office and he started to watch a DVD on my laptop but was soooo tired! All that walking and excitement at camp - he was exhausted! So I put out the sleeping bag on the floor of the library and he just crashed. He slept for about an hour and a half (I got some reading done but a friend came in and we wound up talking quite a bit - our recent vacations, work, etc.). When we got home, he wasn't so hungry but ate some dinner, watched just a little TV, and fell sound asleep on the couch. I was able to get bills done and some other work, but we both headed up to bed at 10:00 and we both were sound asleep shortly after that.

Today, Day 65, they are supposed to do a field trip with camp. Stephanie said either swimming or a movie - it's raining out now so I'm betting on the movie. That should be interesting to hear about! I don't know if it's to a theater or just to the library or NISRA for the movie - we'll find out! It's 6:30 a.m. - Josh is usually up and moving by now but I think he was sooo tired from yesterday, I'll let him sleep a bit longer. I also put something different in his lunch today - I think all the peanut butter he eats is starting to, as it did once before, cause a litttle bit of reflux so I'm going to try cutting down on the PBJs! We'll see how lunch goes!

Well, on with Day 65 - thunder, rain, lightening, and the garbage truck!

Day 61 into Day 63

2010-08-01T07:04:00.000-07:00

The rest of Day 61, Friday, was pretty good, although Mom said Josh had one episode when he struck out at her. He wasn't getting up to pee so she was trying to get the "blue sheet" under him and he hit her in the face! She took his hand, looked right at him in the eyes and said, "You don't hit Gramma!" He was sulking still when I got home. Hhmm.... Other than that, Mom and Dad said he had one PNES (they said it lasted about 3 minutes) earlier in the day when they reminded him to go pee. This peeing thing is really the bane of everyone's existence! They said, outside of those two things, he watched no TV and played with toys all day, and with them. They were exhausted! I had brought dinner home from a restaurant near the office (they were celebrating 1 year in business - they're great - Culinary Fox Cafe - and the chef was doing BBQ all day long so I picked up a whole bunch for dinner), and a friend was coming for dinner as well. Josh was hesitant to come to the table but he finally did and ate like, well, a roast pig! Josh and Dad retired to the family room, and Mom, me, and the friend all played Scrabble for a while. Josh fell asleep on the couch and, when time to go up after everyone left, went up without problem.

Yesterday, Day 62, I finally got the blood tests for him. I had called the doc Friday and explained the 4 times I had tried taking Josh to the lab, and he did a quick referral to the outpatient clinic at Good Shepherd. Then I had called Good Shepherd to "warn" them about the tests, all that has gone on to get them, and about Josh. When we got to the clinic Saturday morning, they were prepared. It had rained and I figured if Josh went down with a PNES in the parking lot, he'd get soaked, so I went in, they had his name on a sheet of paper, and I asked if we could use a wheelchair to get him in - they were terrific. A young man came out to the car to push Josh in with the chair. When I went to the registration desk to check the paperwork in, Josh did go into a PNES in the wheelchair - lasted a couple of minutes. But, when it was over, he was scooting around in the chair, turning sharp turns, going in and out of waiting chairs - it was pretty cool seeing him running around in the chair like that, but also kind of disturbing that he's been in wheelchairs so much that he knows how to do all that. Oh well... can't change history! Anyhow, we waited a whopping 30 seconds before the young woman who I guess I had talked to on Friday came out and said to just come on back. They had 2 techs waiting, and they pulled a male nurse over from across the hallway. They were absolutely fantastic - they explained everything they were going to do, the techs held Josh's right arm to draw the blood, the nurse held his left, and I sort of draped my arm around his shoulders and talked to him. They got the blood in less than 2 minutes - found a vein immediately, worked quickly, were all smiles and talked to him all the time. I thanked them over and over for making this so easy and painless (sort of, I guess!). They put the gauze over the spot where the draw was, then wrapped a smiley face adhesive gauze thing over the spot to hold the plain gauze in place. By the time we got out to the car, Josh had that off and was handing it to me. We decided that Teddy Bear (who was with during the whole thing) needed to have it on his paw so Teddy wore the bandage. Piece of cake! I just kept telling him how proud I was of him for how well he did - no hitting, not even an attempt at hitting, etc.

After the hospital we went to Bravehearts to introduce Josh to the stables and horses, to prep for camp in a week. He didn't want to get out of the car at the barn. So, I went into the barn and was just watching the session that was going on. There was a tall young man waiting for his session - he said, "I know you!" and I asked where he knew me from. He said, "I know you from now!" So we chatted a little when an older woman asked if she could help with anything and I explained why we were there, that I had spoken with someone who said it was OK. The woman came out to the car (as we were walking, I warned her to watch out, that Josh is a grabber - she said she deals with it all the time, no big deal). The young man followed us out. Of course, as the woman approached Josh, he did grab out but she took his hand and said, "we don't hit, give me 5" - he did and she backed off. The young man was standing there so I figured enlist his help - I asked his name (Tony) and introduced him to Josh. Then I asked Tony if he was nervous the first time he came to Bravehearts and he proceeded to say he had been but he got over it and it was really cool to ride the horses and you get to wear a cool helmet to help your head - he went on and on. Then he said Josh shouldn't be nervous and he went back into the barn. Josh got out of the car, I put his gaitbelt on him just in case, and we walked in - he was in high guard, but he did it! Unfortunately, he did go down into an overload (not a full blown PNES) at the doorway to the actual riding arena. The older woman was there and I explained what was going on - she went to get Sarah (the person I had spoken with on the phone - she's the rec director) and we introduced ourselves. Josh got up, sat down in a chair for about 2 seconds, then went right over to the fence where he could see the horses. Tony had been there watching the overload and he was getting a bit nervous - you could see it in his face and how he was watching - but when Josh got up Tony said again to not be nervous. Josh is pretty excited about the idea of the horses, and that they have a basketball hoop to shoot hoops while on the horse! We'll see how it goes!

After Bravehearts, we went to Rochelle - a reward for doing so well at both the clinic and at Bravehearts. We saw 3 Union Pacifics and 1 Burlington, and we had a car lunch picnic. The most exciting thing about Rochelle, though, was that Josh actually got out of the car and into the bathroom at the little bookshop/museum! Whoohoo!!! This was the first time he had gotten out of the car at Rochelle since he got out in his wheelchair when he had the broken leg (we had gone with one of the homecare workers)! And, it was the first time in forever that he went into the bathroom there! Whoohoo!!! And, we kept the car doors open while we had our picnic - he usually asks to keep the doors closed and windows up (air on!) so the noise from the trains isn't as loud (go figure - loves seeing the trains but the noise is rough for him!). This time, though, doors open, trains went by, blew their horns pretty dang loud, and Josh did great! He even got out of the car (for a whole 3 seconds, but it was out!) after he was done eating!

By the time we got home, we were both wiped out. Josh watched a train movie while I took a snooze, then he fell asleep after I woke up. He snoozed for awhile, we ate dinner, and then we both kind of just vegged. Rough getting up to bed, though, and we both had to apologize to each other for the rough time. Here the day had gone so amazingly well and it had to end that way. Well, it happens.

This a.m., Day 63, Josh was up around 6:30 and came in to wake me (oh yeah!). He went in to go to the toilet on his own (as usual), and then wanted to just wash up - so I filled the sink and said, "OK, you do it on your own this morning" and he did! I went to make the beds and by the time I was done he clearly had washed up - water all over himself (even his hair and his cheeks - he hates washing his face) and the countertop, the floor, .... But he did it! He played in his room while I got washed and dressed and now we're sitting in the family room. I think he's going to snooze - he's watching Blue's Clues while I'm typing here and his eyes keep closing. Personally, even though we haven't had breakfast yet, a snooze sounds awfully good! We're going to head over to the Rec Center today to see where we're supposed to go to camp tomorrow - he's very excited about seeing his aide again (as am I! soooo happy she will be working with him again!) even though a little nervous about camp.

So, into Day 63!

Days 59 into 61

2010-07-30T03:40:00.000-07:00

The rest of Day 59 was pretty quiet! Josh was not very cooperative at the start but we wound up having a good morning. He was really happy when Francis came - they played the tip the hat game, talked a lot about her dog, Bogart, and our vacation and stuff. She said she has noticed that he is a lot more calm and "sure of himself" since she last saw him. And, boy did he talk with her!

Yesterday, Day 60, I had planned on taking Josh to the office - he was going to help me with clearing out files and doing recycling for me. But, there was a meeting called. So, Gramma Bev and Boompah kidsat all day. Mom said he was great. He did have a PNES when she reminded him to go pee, but he went right after it was over. He is getting up to go pee at times, and the sticker chart is almost complete so I'll make up a new one to start on. Most times, though, he'll wind up peeing in the depends, then go into the bathroom and just "squirt!" Theoretically, that's enough to earn a sticker since he does pee in the pot, but I think he next chart will be a bit more strict about actually doing all the pee in the pot! Hhmm... I think he found the loophole in the plan! Had a great, quiet night - Mom and Dad stayed for supper (Josh actually had a homemade slider and salad!). They left around 7:30 or so. Josh said he wanted to watch a Blue so I was asking him which one and he went to sit by the dining room table. He just looked at me and said, "I tired, I sleep on couch. Mommy play music, please." So, he layed down on the couch, I started playing some Bach Chorales, and he was asleep within the first chorale! He went up to bed without any question.

Today, Day 61, Mom and Dad are kidsitting again. We'll have a couple friends over for dinner tonight along with Mom and Dad, so we'll see how Josh does in getting ready for bed at some point. I told him this weekend we can go train hunting maybe in Rochelle. Hope it doesn't rain - the lawn needs mowing!!

Days 56 (con't) into Day 59

2010-07-28T06:20:00.000-07:00

I'm totally frustrated with this blood test thing. Josh's primary ordered blood tests - just to check cholesterol levels - and we've tried four times now to get the tests done at the lab the doc works through - and no such luck! The first time the lab as so crowded there was no way we were going to wait. The second time was at 7:30 on a Saturday morning - no one else there in the waiting room, one tech, smaller than Josh, and there was no way we could hold him steady enough for her to draw the blood. Yesterday I went to another lab facility where I was told - by the tech on that Saturday and by the facility itself - there would be two people and, between the three of us, we'd be able to hold him steady. Nope. One tech was there and she said, "I don't know why they told you we'd have two, we never have two." She suggested going back to the initial facility which is across the hall from an immediate care place where they might be able to have someone come over and help. I just called the lab to see what the deal was - how crowded they were, whether this was going to work out. It was the same uncooperative woman from yesterday's lab and she now said, "I don't know if the immediate care will send someone in, you'll have to call them." Forget it. I'm letting Josh eat breakfast (these tests are supposed to be fasting tests!) and I'll call the doc to set something else up. This is just not going to work this way. I hate the idea of getting in an ER just have blood tests - I think ERs are part of his emotional problems now and I really, really hate the idea of paying the copay on an ER just to have blood tests done. Not sure what is going to happen with this.

Anyhow, the rest of Day 56 (Sunday) was as quiet and calm as Day 55 was! We just hung out, played some games, vegged. It turned out to be a great weekend!

Monday was Day 57. Josh came to the office with me in the a.m. - was terrific. He started to go into overload as we were getting out of the car at the office but he pulled himself out of it. He came into the office, sat down on the couch for a minute, then came right back to the library where I set up my laptop to watch DVDs while I read a transcript. One of my colleagues recently went on a trip to Alaska and he brought back a DVD of the White Pass and Yukon Railway - he brought it in for Josh to watch and it was really cool! Someday.... Josh was so cute - he sat there watching the DVDs while I read, but he also had his spiral notebooks with and he was writing in them as I was writing my notes on the transcript. The little (?) lawyer! He did go into overload just prior to lunch - said we should go pee and wash hands for lunch and he went down on the floor - don't think it was a full blown PNES but was a bit more than what happened in the car. After we did lunch, I took him over to Gramma and Boompah's for the afternoon so I could go back to work (we had an office meeting to congratulate those 25-year folks, as it turned out - was rather hoping it would be an announcement of where we are moving in October!). I was sure he'd snooze at their house, especially after having an absence seizure in the a.m., but he didn't - Mom said Josh talked soooooo much! They had movies on for him (AirBud and the Snow Buddies ones) but he just talked and talked! He snoozed after I got there so we had a nice adult dinner, then he ate, and we came home. When we got home, he asked me to "Mommy play music!" so I played the piano for about an hour and a half while he played with his train and "sang" with me. We finally both went up to bed around 9:30 or so.

Yesterday, Day 58, was the lab disaster. Poor kid didn't eat breakfast, we had the problems with the lab, and then we had to go right over for an OT eval. I had spoken with the OT previously and she rather expected him to go into a PNES but he didn't. She gave him a puzzle that he did in less than a minute. She got out a little snap vest and had Josh "dress" his teddy bear that he had with him - obviously problems with maneuvering snaps but he had the finger strength to snap and liked unsnapping. She had him identify letters of the alphabet and noticed that his eye focus was actually on the row lower but he was identifying the letters she was pointing to. She had him "write" his name (the J and O are identifiable although all over the page, then he does kind of a weird curvy line for the S and then covers all of them with the H), color in a small figure (a star and a circle - kid after my own heart doesn't stay in the lines but at least made the coloring as small as the shapes), played with a sensory ball a bit, shot some hoops. He did go into overload (but not a PNES) when he was supposed to get up to go. We talked outside the therapy room and she went right into how she normally gets a referral for 8 sessions (will probably try to get more), she'd work with him on dressing (practicing with Teddy Bear to learn), work on learning to tie his shoes (although she said there's nothing wrong with velcro gym shoes if I can find them in his size!), work on other fine motor/OT things. Scheduling could be tough - the only time available is a first thing in the a.m. session which would make him late to school and me late to work. So, she would contact the doc and get that ball rolling.

The rest of the day (I had done an altered work schedule and had the day off) - he still hadn't eaten breakfast! - so we watched trains at Crystal Lake and had breakfast, stopped back at home to get some supplies and go pee (too late for him - he had gone down on the floor in the family room and did an overload - not a PNES - and peed but at least he was in a depends), then we went to West Chicago to see the trains there and do late lunch. We love getting lunch from Augustino's on North Ave. - good kids meals and good adult meals! We got home around 4:00 or so, both of us wiped out. Josh snoozed for a little bit around 5:30, and he had dinner around 7:00 or so. He is not eating as much - probably because of the NV but that is OK considering how big he is, and I know he's getting the vitamins, minerals, and protein from the NV and from what he is eating. He watched AirBud again while I did some work, I vacuumed the house (! - not Josh's favorite thing but it needed to be done!), we got the garbage and recycling out, and then we both just went to bed.

Today, Day 59, planning on taking him to the lab, we both stayed in bed a little longer than usual. He got up a little after 6 and came in to wake me. I was already awake and told him to go pee, then he could wake me up. Every morning, I go in to wake him (or at least get him up and moving if he's already awake) and we do a back rub, and then I do a voice for Teddy to help get Josh awake (we goof around with it and Teddy is quite the acrobat). So, today, Josh brought in his little Blue's Clues doll - Blue was rubbing my back and Josh was doing the Blue's voice to wake me up. Amazing! I thought it was pretty interesting that he chose Blue, who doesn't talk (he hates the newer Blues episodes with the talking Blue), rather than Teddy (again, who I do a voice and talk for). Interesting.

So, since I took the a.m. as a sick day in order to get him to the lab that we are not going to now, we'll have breakfast, maybe hang out unless he wants to go to the office for a bit, and then, yeah!, Francis will be here this afternoon to do kidcare. Whoo hoo! Josh is very excited about her being here and has said he wants to play the tip the hat game with her (we'll see if that happens, they usually just sit and talk!). So, on with Day 59!

Day 55 and 56

2010-07-25T06:54:00.000-07:00

Yesterday, Day 55, was great! Was a nice, quiet day at home. I didn't get any house work done until late in the evening after Josh went to bed (of course I was up until 1:30 doing laundry but at least it's done!). We played, we did a lot of "writing" and coloring, snoozed - a great, lazy Saturday!

Today is Day 56 - Josh was up early but let me stay in bed until about 8:00, now he's taking his time getting up also. Maybe trains today in West Chicago? Who knows, maybe just another lazy day! I went in to check on Josh as he was resting in bed - I think he had an absence seizure that lasted about 15 seconds - eyes were open, mouth was open, but no reaction to me and it looked like previous absences. Hhhmm.... he hasn't had one in quite a long time.

Days 53, 54 and into 55

2010-07-24T08:12:00.000-07:00

Josh did really well with Gramma and Boompah watching him on Thursday - Day 53. He played the tip the hat game with Gramma, played with his remote control train, went to pee without too much problem (got 3 stickers for it! whoo hoo!!), and we had a really good dinner from Andy's when I got home from the office. We were sitting in the living room before Mom and Dad left and Josh layed down on the couch and said, "Mommy, music please!" So I sat and played piano for awhile and he fell sound asleep on the couch! He went upstairs without any problem after they left.

Yesterday, Day 54, was the field trip to Lamb's Farm. The camp folks called me at work on Thursday to say that, because of the weather, they were not sure they would stay the whole day - heat index was supposed to be over 100 and it was supposed to rain. Well, they wound up going for the morning and then went back to NISRA to hang and watch movies - fine with me! That heat would have been unbearable! Josh, except for a PNES getting on the bus, did really well and was very happy to see his aide from before (yeah!). He was talking about seeing a horse when we got in the car to go home. Unfortunately, the evening didn't go so great - he was exhausted and I was pretty tired myself. There was a lot of uncooperativeness in getting his clothes changed (he had peed through on the bus a little bit and I wanted to get him in dry clothes). And, when I was putting the depends on him, the darn thing ripped (don't understand why that happens!) and he thought, I think, I was mad at him about it so he knocked my glasses off. I was so tired I said I just didn't want to have a bad night so we both just went to bed! I think we were both still recovering from the vacation, and he had a big day with camp so sleep was a good thing.

There were storms during the night - I think Josh slept through them but the thunder and lightening woke me around 3:00 or so. I came downstairs for a couple of hours but then went back to bed. I'm pretty sure Josh woke up around 8:00 but neither one of us actually got up until almost 9:30! Whoo hoo!! I think we're going to have a lazy, stay at home day today, Day 56. It's still cloudy out and there is housework to do (yuck). So, it's games, baking cookies maybe, and just house stuff. Quiet day... I hope!

Days 47 through 52

2010-07-21T19:37:00.000-07:00

Back from vacation. There was no cell reception and no internet so couldn't do a daily blog. We were in Beaver Dam Lake, Wisconsin - used a nice house right on the lake as a base camp so we could go to the family reunion in Deerfield, and then do car trips to other places. We hit Horicon, Door County, Columbia County, Baraboo, Devils Lake - lots of driving, lots of adventures, no trains except a couple of sleeping trains - but they were cool (an old Wisconsin and Southern, and some others that were in the "train hospital" to get repaired and painted, then we watched the Amtrak in Ripon - I think - two Amtraks going in either direction)! We had pelicans visit us every morning, some very busy sparrows and wrens right by the house, a visit from a rabbit, and I think a snake (eeeuuwww!!). We picnicked at a park in Door County, saw the goats on Al Johnson's restaurant, and were stopped for about 20 minutes at Horicon by some very arrogant geese who chose to finish their baths in the middle of the road on the 3 mile drive through the marsh. Generally, Josh did amazingly well. He and Gramma sat in the back seat all the time, talking away, looking for trains, birds, cows, whatevers. Mom was so touched on Monday during the drive up to Door County - Josh sat and just held her hand. The family reunion was terrific on Sunday, and Josh did really well. At the last family reunion two years ago one cousin (Vicki) vacuumed with Josh helping. Josh spotted Vicki - from the back mind you - and was very excited to see her again. I have the feeling that, after Josh said hello to lots of cousins whose names I can never remember (embarassed about that!), he will remember them all at the next reunion!

There were a few instances of behavior problems - getting out of the car was tough. On Monday night he just wouldn't get out so I maneuvered him out and he laid down in the dirt - we had a major battle over taking a bath (he wound up not, but I scrubbed him down as he sat on the bathroom floor). Then on Tuesday after the long drive around Columbia County and Baraboo he didn't want to get out of the car again so I had to maneuver him out and he laid down on the hot pavement - he now has a big scrape or pavement burn (don't know which) on his right elbow and his right knee. He also didn't want to leave the "yellow and brown house" today so getting him out to the car was tough. Once in the car he was fine, though, until about 12:30 or so. Mom gave him a snack and a drink while Dad was driving. As we were going around a big bend in the road, I was giving Dad directions, Dad was saying something, Mom took the top off the drink container, she was telling Josh to be careful to not spill, and, whammo, the drink cup came flying into the front seat! Chocolate milk splattered everywhere! Josh was clearly repentent - he was silent the rest of the ride but was trying to hold Mom's hand at times. When we got home, we sat down to eat some lunch (around 2:30 or so) and things were fine until the very end - he shoved the applesauce container and it flew right at me - berry applesauce all over me. I lost it. I yelled at him, told him to get away from the table and me, and don't talk to me. I went and changed clothes (the third time - once in the a.m., once with the chocolate milk, and once with the applesauce), and then Dad and I went to return the rental car (great car - a Ford Flex - has a couple of bad blind spots but really a great car otherwise!), and by the time I got home again I was calmed down. Josh had snoozed some while I was out. I think we were just both really tired, and I know his knee is hurting from the scrape/burn. But, man, not a good afternoon. We talked at bedtime, we both apologized to each other, and we both said tomorrow would be better.

But, on the upside, Josh really did do well otherwise during the whole vacation. He had only two or three PNESs the whole time - once was in a potty at the state park in Door County on Monday. He was crying so loudly during it (he made in into the bathroom but had the PNES while on the pot) I was sure someone was thinking I was doing something to him! Dad said he heard it from the picnic table, and once it was over Josh was fine (as usual) and even liked going potty in the glorified outhouse. Yesterday we had a picnic near a boat launch on another lake (Lake Wisconsin I think) and he used the porta-potty - he had a PNES in the car, but then used the porta-potty - he thought it was cool with the blue water. Whoo hoo! We went on the ferry across to Portage after that and he really got a kick out of that!

All in all it was a good vacation - a little dicey at the very end but I think everyone was just getting tired. As is the case many times, I need a vacation to recover from the vacation! Josh will have time with Gramma and Boompah tomorrow - I've got court in the a.m. and office in the afternoon. Friday should be a Friday Field trip from camp - to Lamb's Farm with the aide he had during the camp earlier this summer (I hope it goes well!), and next week is kind of hit or miss. Francis will kidsit one day, Josh will go for blood tests and an OT eval one day, he'll probably come to the office with me one day, and I'll work from home a couple of days (probably). The week after that he'll have X Camp for the whole week, then Bravehearts, then, amazingly, school starts again! The summer has flown!

Tomorrow, Day 53!

Day 45 and 46

2010-07-15T03:43:00.000-07:00

Today is the last day of summer school and camp. :-( Josh has done so well with all of it - there were moments, but, yeesh, all kids have their moments. Generally, though, he has done so well - participating in group activities, working hard on school work, doing fun stuff with camp and school - all the folks that have worked with him this summer have been just terrific! Obviously there are things that need to still be worked on but he has come far - the PNES have reduced in length and intensity, he is more cooperative, he has more energy generally speaking. I'm hopeful that the NV will continue to work within Josh and that there will continue to be progress. Next week, he'll have a Friday Field trip, then a week of who knows what, then X Camp for a week and then, whoo hoo, Bravehearts for a week!

It's another rainy day today so not sure what they will do with camp - there is a Family Night party tonight that was supposed to be outside at a park - don't think we'll go - between the weather and getting ready to leave for vacation tomorrow, there's just too much to do.

Got a call from the psychiatrist yesterday - she again emphasized that meds are not the first line of offense with Josh since he is doing well at school and the people at school are so good with him. Thank goodness for all of that! Perhaps the NV will also continue to work so that meds will never (!) be necessary.

So, today is day 46, day 45 was a good one, and Josh is awake upstairs, ready to get this day going! Vacation tomorrow!! Not sure if there is internet accessibility where we're going so not sure whether I'll be able to blog for the next week - bringing the computer with just in case (and will likely have work with me - yuck!). But, Day 46 begins!

Day 44 and 45

2010-07-14T04:45:00.000-07:00

What an interesting day yesterday, Day 44, turned out to be! I picked Josh up at camp for an appointment with a new psychiatrist. Before leaving camp, Stephanie and I had a long conversation about how Josh has been at camp - she said she noticed that he has had tremendous energy throughout the day, she puts out the mat for him to snooze but he says no, he's running around the whole time, very social, talkative, etc. I told her I had changed how I was giving him the NV - spreading it out over the day - and she said she really wondered if I was doing something differently. So, I'm going to keep spreading it out to see if there really is a relationship to energy level. She confirmed that she will be his aide on the Friday Field Trip, the X Camp, and at Bravehearts - I am soooooo thrilled!!!! Camp has its fun fair today (they made a mistake on that on Monday). Today and tomorrow - then no more ESY or afternoon camp!

The doc appt - we got there and Josh laid down on the sidewalk before going in. I walked away and within seconds he got up and came inside. The waiting area was pretty crowded so we stood up almost the whole time we were waiting. When the doc came out to call us, he turned and looked at her, laid down on the floor, was up within 15-30 seconds, and walked into the office. We were there for almost an hour and 45 minutes (with the last 15-20 minutes or so Josh laying on the floor not getting up to leave - he eventually had a PNES which the doc saw). Her take on things is that Josh does have an anxiety disorder, possibly PTSD from the broken leg (if not other things as well), obviously the speech issues, possibly mild to moderate MR, but she also thinks a lot of the behaviors are attention getters. She talked a lot about medication but emphasized a few times that we will not start out with meds. She is going to contact all of Josh's docs and the school (I had sheets from the school and camp that have come home over the summer and she was impressed at how well they handle Josh, that he is doing well there, and that they are in such good communication - two things she noticed amidst the papers were that one entry was that Josh likes to be the center of attention, and the other thing was right around Father's Day when Stephanie wrote that Josh said he missed Daddy), we'll get a case management team together to work in-home, and that respite care really needs to be set up. She asked if I had tried to get a Big Brother thing going - I have, a couple of times, but the Big Brother organization doesn't seem to get it that I need a Big Brother for Josh, not that he should be one! I'll keep trying, though! We talked about Francis and how well he does with her, but she said I really should have a day once in awhile to just do stuff I want to do, instead of what I need to or have to do. She is also going to be in contact with the county Mental Health Board to get things moving on the team development and respite (I'm still waiting for the contract for respite care through another service organization in the county - they called to say they are looking at the money and figuring out how to divide it amongst the families getting it, then they will send the contract for the vouchers).

I talked to the doc about NV and brought all the info - she said it looked good, lots of brain stimulating ingredients. We talked about the changes I've seen so far and she said she sees no reason why he shouldn't stay on it. Yeah!

Josh took a long time to get up and out of the office but, as usual, right after the PNES, he was up as if nothing happened. We went to get his haircut afterward - he started to be uncooperative getting out of the car and I said to him, "OK, you've already had enough moments today, let's go"and he did! He did a great job in the haircut, even helped the lady use the razor to cut his own hair (!). As a reward for doing well there, we did a dinner picnic by the trains in Ridgefield and saw a few Metras (including the two-engine one that he likes to see). We got home, he came in to pee (about 10 seconds on the floor then up and into the bathroom), sat down on the couch, and we just vegged for a little bit. He fell asleep on the couch around 8:00 and I got him up to bed without any problems around 8:30 (he was so funny - he went into the little bathroom to pee before going up, then I guess he was so tired he forgot he had already peed and he went into the bathroom upstairs again!LOL!). He was asleep in bed within seconds.

Unfortunately, Josh woke up really early this a.m. - 4:30! So right now, Day 45, he's pretty sleep laying on the couch watching a Blue's Clues. Getting out to the bus is going to be difficult!

Day 43 and 44

2010-07-13T03:37:00.001-07:00

What a weird day, Day 43. Instead of giving a whole serving of NV in the a.m., I divided it up throughout the day. The notes from school and camp were that Josh had so much energy throughout the day - he collected recycling from everyone in the school, he breezed through his schoolwork, he played with playdough (!), he was bouncing around at camp - talkative, sociable, energetic! So, I guess we'll try spreading it out again, see if that makes any difference again.

And, Josh's counselor gave me some great news! She will be his counselor at the therapeutic riding camp and will likely be his counselor at the week long fun day camp, and will likely be his counselor at the next Friday Field trip (to Lamb's Farm) - Yeah!!! I certainly hope that with her there with him, he will have a much better experience! Yeah!!!

By the time we got home, though, he was tired, cranky, I was tired and cranky (one of those days at the office where I was handling 12 different cases at once). We wound up going to bed WAY early - Josh was asleep by 6:00 and I was asleep by 8:30. I'm hoping today will be better for the two of us - lots of uncooperativeness from Josh and lots of losing it from me yesterday.

We see the new psychiatrist today - hopefully she will have some insight and ideas on the peeing and PNES stuff. Haircut for Josh after the appointment, I hope!

So, Day 44 begins!

Day 41,42, 43

2010-07-12T03:52:00.000-07:00

Well, my conference was interesting - juvenile justice, adolescent brain development, etc. Josh's weekend was pretty good - generally Josh kept Gramma busy with mini basketball, soccer with the inflatable ball, card games, and "tip the hat" game with bean bags. He had a few instances of not cooperating with Gramma and Boompah, and he wouldn't get up to pee yesterday (Day 42) without difficulty again. But, he had fun with them otherwise. And, they managed, went home tired, I'm sure! A couple of PNES over the two days, but not an unusual amount.

Today is Day 43 and Josh is starting off strange - I'm down in the family room and I'm hearing him moving around upstairs already. There's a fun fair at camp today (instead of going to the pool) - last week of school and camp! This summer is flying by!!

Day 40 (con't) and Day 41

2010-07-10T02:56:00.001-07:00

OK, so everyone has a bad day. The Terrific Treehouses didn't turn out as well as I had hoped but at least he made it through the day. New people, some very noisy kids on the bus, new experiences... Josh did get off the bus at the play areas but didn't really participate, and I don't know if he got off the bus at all at the pool. The campsite director called me around 2:00 to say he was sitting on the bus, with the air on, playing with one of the aides. I asked if she wanted me to come pick him up and she said no, he was content but she would call me back if there were any problems - I didn't get called back. At least he tried something different, I suppose is one way of looking at it. And, with Josh's difficulties in new routines, one day is not terrible.

As soon as we got in the car and home, he was fine, he was playing, and we had dinner. He fell asleep as we were watching a movie (kind of bad - the movie was called Ed - had Matt LeBlanc and a monkey, go figure). I couldn't stand it so as soon as I saw he was asleep, I switched to a different movie. Never made it through that one either. I woke Josh up to go upstairs and we both just went to bed.

Early day today, Day 41 - I had to get up early for a conference in Chicago and Josh was awake already. Gramma and Boompah will be here to kidsit all day today, they'll sleep here, and kidsit again tomorrow for 1/2 day (more of the conference). Sure hope Josh gets up to pee while they're here! Day 41 begins!

Day 39 and 40

2010-07-09T03:34:00.000-07:00

Another really good day at school and camp, Day 39! After I picked Josh up after camp (van driver said camp folks told her he had a great time with camp but had a rough time getting into the van - Josh's regular aide/counselor wasn't there and he didn't want to get into the van until the driver and the van aide said, "OK, Bud, let's get going!" and then he got on without any problem, although he started swinging at the aide once on the van - he calmed down in a minute or so) we went to Gramma and Boompah's to plan our vacation next week. We were having the darnedest time finding someplace to stay in Wisconsin that it took a long time before we ate dinner. By then, Josh was really tired and didn't want to come to the table - had a PNES but then, as usual, just got up and ate his dinner. I decided we should just go home after eating, and we would talk more about the vacation today. So, we got in the car and came home. Josh said he wanted something to drink, so he had his NV and his meds. I went to put his camp shirt into the wash and by the time I came back up from the basement, he was sound asleep on the couch! One tired pup! Fortunately, Mom and Dad called and said one of the places we had contacted to stay in WI called back and they were available! Yeah!! So, we have a vehicle to ride in (Dad arranged for a van to rent) and a place to stay up near Horicon - central to the family reunion on the 18th, and to places to see for the rest of the time. Next Friday - VACATION!!! Yeah!!!

Josh goes to a Friday Field Trip today - Terrific Treehouses. They are playgrounds designed to be like treehouses but are handicapped accessible, even the highest points of the camp. It should be fun, and interesting, to see how he does with all that. After two playgrounds, they're going to a pool - should also be interesting. I spoke with someone the other day about the pool and she said they know Josh now, and they may just hang in the shade and do the squirt bottles with him. Someday, I'd really like to get him back into a pool! He's just so scared of falling again!

So, Day 40 begins!

Day 38 and 39

2010-07-08T03:46:00.000-07:00

Another "awesome" day at school yesterday, Day 38! Note said Josh really worked hard and did a lot of the recycling stuff. They went to the pool with camp but Josh didn't want to go in the water, even in the baby pool - he is so petrified of slipping and falling that he had a couple of PNES at the pool but at least he did really well getting on/off the bus! The school switched buses again - they are getting new buses and Josh is riding in a van now - I think he likes it better than the bus.

I think the NV is working on Josh's attention level - last night after dinner he sat at the dining room table and "wrote" and drew in his spiral notebooks for about 1 1/2 hours and we played cards just about until bedtime. He fell asleep on the couch (was going to watch a Blues Clues and fell asleep during it!) and went upstairs to bed without any problems.

Day 39 begins.

Day 37

2010-07-06T18:34:00.000-07:00

Josh is really into the peeing sticker chart! This a.m., before going out for the bus, he was not too cooperative and, when he finally did get up, I asked if he needed to pee. Yep, indeed, he went right to the bathroom, gave me the chart, and went in to pee. He got on the bus just great - no word on getting off. He had a good day at summer school - they had music therapy today and he really liked it (duh! he always loved music therapy!!) and strummed the guitar. The note included that he didn't want to get up for P.E. today - not sure why.

I picked Josh up from camp after their lunch and we were going to head out to the dentist appointment. We stopped at home and I made a different NV mix. Finally found something Josh really doesn't like - this a.m. before school I had made vanilla NV with some peaches and plain yogurt (I added about a 1/2 cup of chocolate milk just to give it color) - he HATED it! I tried doctoring it up with various things, thinning it out (I think I put too much yogurt in), and he still wouldn't drink it. So, he really didn't have much to drink this a.m. (although I always put in 2 milks for during the day) - maybe that explains the not wanting to go to P.E.? Anyhow, when we got home before the appointment, I mixed up some of the chocolate and vanilla NV with milk and water - man, he just downed that! I took some with for after the appointment just in case he wanted something and, sure enough, he did. So at least he got in the full servings today.

The dentist appointment went well - thanks to modern chemicals! ;-) The dentist, Fred Margolis, is marvelous and specializes in kids with special needs. He is the nicest, most genteel guy, and he is just great with Josh. Dr. M prescribed triazolam for Josh and it didn't knock him out, just sort of mellowed Josh enough that Dr. M could do his work (papoosing Josh also helps!) - just a cleaning and flouride treatment today. No cavities! Yeah!! I told Josh that means he's doing a really good job brushing (and he is!). Josh will need dental surgery, though. Last summer, Dr. M said Josh needed gum surgery and he wanted to pull a couple teeth since Josh is not exactly a candidate for braces. That hasn't changed - Dr. M still wants to do both. Not sure when, or what will be covered by insurance, but they are starting the ball rolling on finding all that out.

Dr. M has a gumball machine that is filled with jawbreaker-size rubber balls - every time we've gone to see him, Josh asks for one of the balls (I think I have three in my purse!) - and Dr. M was more than happy to give him one. Then, as I was paying the bill, Josh was asking for stickers - and the women at the desk were more than happy to give him a sticker from Thomas the Engine. Of course, by the time I was paying, Josh was getting more and more wobbly from the med so I got him out of there as soon as I could and into the car. Not surprisingly, he forced himself to stay awake and kept saying "no hitting, see trains!" So, we tried to see some trains at Arlington Heights (none) and he was getting sleepier - so we headed on home. We did see one Metra on the way home and, of course, as we rounded the corner close to home, his eyes started to close. Fortunately he wasn't sound asleep and I helped him in and right upstairs. He fell asleep right away (around 5:30) and I think has been sleeping since. I hope he sleeps through the night!

So, a fairly good day for Day 37. Tomorrow, there may be a different bus - his driver said she may be switching to a van instead of the bus (she said SEDOM is getting new busses and vans). We'll see what happens - tomorrow, Day 38.

Day 36

2010-07-05T19:24:00.000-07:00

Rough start to the day but it ended up amazing. I think it was because Josh knew I didn't have work today and he simply didn't want to go to school. But, after getting him outside and into the car, he got on the bus just fine. Bonnie, his bus driver, said he was better getting off at school last Thursday so that was good. The note home today from school was that Josh didn't want to do his job today ("selling" the gloves) but he wound up doing a different job and loved it - and he had a really good day. Josh got off the bus at noon without much trouble.

The minute Josh got into the car, he said "no hitting, trains!" So we went back and forth on where to go - we decided on Rochelle but I said we needed to go home to make a picnic lunch and go pee before heading out. The minute we walked into the house, Josh went right to the bathroom, took the sticker sign off the door and handed it to me, went back into the bathroom and peed! So, he got his stickers. I made up a lunch and out we went to Rochelle.

We stayed at Rochelle for about an hour and a half - saw three Union Pacifics and a Burlington! Josh fell asleep on the way home - out like a rock! He didn't even wake up when I stopped for gas and the guy next to us was blaring his radio (good music - Eagles!). Josh woke up just as we were turning into our neighborhood. And, as soon as we walked into the house (he got out of the car without me even telling him to), he went to the bathroom, got the sticker sign, went back and peed! Got more stickers. He was so cute - after he was done in the bathroom, he asked if I needed to pee (yes! it's a long ride!), then he put the seat up for me and, as I walked in, he said "close door, Mommy?" and he closed the door for me. Then I asked him if he minded if I rested for a little bit before making dinner and he said, "sure!" So he watched a train moview (!) while I dozed a little, then I made dinner. He ate a really good dinner and, as I was on the phone with Mom, he sort of dozed. He eventually fell asleep on the floor and, when it was time to go upstairs, he got up without any hassles, went right upstairs, peed (amazing he was still dry! yeah!!), and then asked for me to read him a book! Whoo hoo!!! I usually grab a couple of books and read to him even though he's not that crazy about the books. But tonight, he actually asked me to read to him! Yeah!!! So I read him The Lorax (sort of went along with his job at school today - he was in charge of organizing the recycled cans).

I'm hoping the air conditioning will make sleeping a bit easier tonight - it was so muggy in the house last night. I hate using the a/c, much rather have fresh air, but it was miserable sleeping. Tonight it's nice and cool, and you can barely hear the fire works over the lake!

Tomorrow - school, camp, and the dentist!

Days 34 and 35

2010-07-04T19:16:00.001-07:00

HAPPY FOURTH OF JULY!!!

If there was ever any doubt that Josh's PNES are PTSD-related, today answered that question. Josh was getting something out of the pantry during dinner and he fell - it was sort of like watching a ball in a pinball machine - he bumped into the pantry door, fell back into the wall between the kitchen and dining room, then forward into the opposite wall, then back against the bookshelf in the dining room and down he went. He didn't get hurt at all - I didn't even see any mark that could turn into a black and blue spot, but he totally lost it. He went into a PNES that lasted over 5 minutes (the longest I've ever seen). Afterward, he kept needed reassurance that he was fine, that he didn't get hurt, and that sometimes people fall without getting hurt - he kept talking about his fall when he broke the leg and, eventually, he was OK. It was absolutely clear he was panicking about the fall and breaking something. Again, he was fine, but it was also so clear that the PNES was related to the fall last Fall.

Other than that, he had a terrific day both yesterday and today! I started using a chart to get him into the bathroom to pee. I made a picture of a railroad track winding down the paper - starting at a toilet and ending at a toilet, with railroad signs along the path and a stoplight at the beginning and end. Every time he went to pee in the toilet, and actually peed in the toilet rather than his depends, he would get a Thomas sticker for the sign and one for himself. He got three stickers today! And, when he had the bad PNES after he fell, he did pee in his depends - he got up anyhow and went to the bathroom. He told me he shouldn't get a sticker but he would try again "yater."

He had a great time with Gramma Bev and Boompah today - talking up a storm, playing with Gramma, asking Boompah questions. And, he is eating more and more on his own, and he even ate watermelon tonight - all on his own! He normally hates watermelon!

Tomorrow is school in the a.m. but no camp in the afternoon - I think we'll go someplace special to celebrate how well he is doing.

I upped the "dosage" of NV today - three scoops between the two servings. Eventually I'll get him up to the 4 scoops but I think I'll stick at 3 for awhile to see how it goes. We go to the dentist on Tuesday this week - need to give him the triazolam an hour before the appointment - we'll see how it goes - he's outgrown the papoose Dr. Fred uses with him!

Day 33 (con't)

2010-07-02T19:03:00.000-07:00

Josh did great with Gramma and Boompah today, except he's doing the "I'm not getting up to pee thing" again. He'll refuse to get up to go pee during the day, even though he does it without any problem in the a.m. when getting up and when going to bed. He'll have an anxiety thing, sometimes a PNES, wind up peeing during the episode, but then will go into the bathroom even though there is no need any longer. Mom and I were talking about it, that the problem really could be the bathroom on the main floor here at home. I know Josh had talked about the person at his previous school who hit him in the "little room" so I'm wondering if it's a PTSD thing, or it could be, as Mom said, maybe he's claustrophobic and just can't stand being the small bathroom, or it could be that it's PTSD thing from the leg - he used that bathroom (with the commode in the hallway until he could get into the bathroom) while recovering from the broke femur. Who knows?? The bathroom upstairs is bigger, and I think the bathroom at school is bigger, so who knows??

On the upside, Josh's balance appears to have gotten better since on the NV. Previously, he would not look up at the ceiling or at the sky. Now, when he is finishing up his drink (whatever kind of drink it is), he asks for the "top off please" (which he did before but then didn't finish what was in the cup) and then tilts his head all the way up to get the last drop possible! And he is looking up at trees and birds when we're out and about. I would think his looking up like that is because the balance is better.

Another thing happened today that, to some, would seem meaningless. Josh has always had applesauce with every meal - applesauce and yogurt started out as, I think, sensory buffers for other food. There was one speech therapist who said he used them as an aide to chew and digest other foods since he didn't chew very well. He moved away from the yogurt a long time ago but he has still used the applesauce all these years. I noticed during the school year he wasn't eating the applesauce and I thought it was because either no one was helping him open the container or because they didn't want to have it thrown in the cafeteria (!). This a.m., I was getting breakfast ready and asked "what color" applesauce he wanted (he usually has the green one - pear sauce - for breakfast). Josh said he didn't want any applesauce! Whoa! No applesauce!! He ate his breakfast totally on his own, without any applesauce! Whoo hoo!!!

We had planned on going to see trains this afternoon. But, after lunch (I took half a day thinking we'd be out train hunting!) I asked him where he wanted to go and he said he didn't want to! Amazing! He wanted to just stay here and play "tip the hat" with Gramma, and play with his remote control train, so we stayed home. Mom and Dad hadn't planned on staying for the day but they did - Mom played with Josh, and Josh asked me to "play music please." So I spent a great deal of the day playing the piano! Turned out to be a very relaxing day for all.

So, I don't know if we'll go see trains tomorrow - I had planned on mowing the lawn and doing some house cleaning - maybe we can do all of that. Maybe I can get Josh to help vacuum - wouldn't that be amazing!

Josh was in bed and asleep by 8:30 - Gramma and Boompah were still here and, after a little rough time getting in to pee, did it and then went up to bed without any problem. 2 PNES today - both when I asked him to go pee. I can't wait to find out from the psych what this connection really is!

So, tomorrow, Day 34, is a play it by ear day, I think. Josh prefers routine, so we'll see how the day goes with nothing really planned.

Really Day 33

2010-07-02T03:05:00.000-07:00

I think I messed up on the day yesterday so today is, I think, really Day 33! Oops!

I think yesterday was a mixed bag - school and camp said Josh had a couple of PNES during the day - all the excitement of the parade, the festivities, some of the kids were playing instruments really loudly, etc. Josh also had a couple of PNES outside of school/camp - one in the a.m. before the bus and then one at Gramma and Boompah's house as we were getting ready to leave after dinner. Not sure why the PNES have been more frequent this past week - I wonder if the NV is finally kicking in on the sensory aspect and perhaps he's more overwhelmed with things going on internally/becoming more aware externally? Will have to keep an eye on this. It almost reminds me of when Josh did the Vital Links Listening Therapy - there was one CD that really overwhelmed him and he got up in the morning and peed on the floor! The OT at that time switched the CDs and the peeing stopped - wonder if it's the same type of thing going on?

On the upside, the school folks and camp folks all say he had an otherwise good or great day. After the PNES, he did participate in the festivities, and camp folks say they just love seeing him come down the hallway to camp, all smiles and rarin' to go! School folks say that he has had a lot more energy (of course, by the time he gets to camp, he has to have a rest for a bit!), and camp folks say Josh just loves to cuddle! Wow!! Josh cuddling with people other than me!! Yeah!!! I know some of the folks on the childrensapraxianet have noted that their kids, after about a month on NV, have the sensory stuff kick in and some kids need to have a lot of sensory input - lots of deep pressure, etc. I wonder if that's what is going on with the cuddling at camp? I hope by the time school starts things will level off sensory-wise, but that there will continue to be progress on the NV.

Gramma and Boompah will be here this a.m. while I go to the office for 1/2 day. I promised Josh we'd go train hunting this afternoon and he can't decide where he wants to go - Rochelle, West Chicago, Hinsdale? He keeps changing his mind about a lot of things lately - wonder if that's connected somehow with the NV as well? Anyhow, we'll go. And, this weekend is the Eyes to the Sky in Lisle so maybe we'll stop there to check out the hot air balloons! Hhhmmm... as I recall, there's a busy train station in Lisle also!

Gotta make some coffee. Day 33 (for real) begins for us both!

Day 33

2010-07-01T03:44:00.000-07:00

Yet another great day at summer school and camp yesterday - day 31! School folks wrote that Josh has been having a hard time getting off the bus this week, though. He did just fine the first two weeks but, for some reason, this week has been harder for him. Could be he's been tired this week - I think maybe a cavity is causing the problem. He said yesterday that the applesauce in the a.m. hurt his mouth. He's going for a dentist yearly in a few days so we'll see. It could also explain why he's been holding his mouth weird - sort of a half smile with his mouth open a little bit. He did that when he had his tonsils out - pain in the mouth. So, we'll see next week.

But, his aide at school said once he's off the bus he did/does great - works hard on school work, gets real enjoyment doing the water wagon and even asks everyone if they want water! Camp folks said he had a great time yesterday - they went to the pool. Josh fell asleep in the beautiful weather but when he woke up he was playing, walking around, playing "volleydog" with his stuffed dog, squirting everyone with the squirt bottle. He had one PNES at school as they were going to camp from school, and one in the a.m. but that was all yesterday. If there's a tooth thing going on, that could explain the increase in PNES this week, also.

We had a dinner picnic by the trains last night in Woodstock. We saw a few Metras but nothing spectacular. When we got home around 6:30 we both just vegged out - I actually got to finally read the Sunday paper and today's paper - so Josh had lots of newspaper and ads to "recycle" in his baskets for me. We were both sound asleep by 8:30!

They are having a 4th of July parade at school today - school folks said yesterday Josh had a lot of fun making drums and hats for the parade so I'm hoping they take pictures today! So, Day 32 begins, all red, white and blue!

Month 2, Day 32

2010-06-30T03:50:00.000-07:00

The start of the second month on NV, day 32!

Yesterday was another "awesome" day at summer school, and a great day at camp. Only 2 PNES - one before going out to the bus and another getting off the van when I picked him up. Don't think there were any during the day at school and camp. Josh's camp counselor thinks there were so many PNES on Monday because of the weird change in routine at camp, what with someone pooping in the swimming pool and having to leave the pool so suddenly. She also said he hadn't had a chance to just rest as they usually do around lunchtime, so that could have explained it. It also could have been simply because it had been a Monday!

Last night he again asked to watch a train movie when we got home, but then he didn't even stay in the room to actually watch it! He was busy with his newspapers for a little bit, but then, after supper, wanted to play the "tip the hat game," so we played for awhile. Then we played with the remote control train and ninja turtle, crashing them into each other all over the living room. He set up the little hats from the tip the hat game and was maneuvering the train through the hats! Then I took out the guitar and we played and sang for awhile - he actually was singing with a couple of the songs. I continued playing as Josh played with the train still and, again around 10 to 8, I looked over and he was sound asleep on the couch, with the remote still in his hands! :-) He went up to bed with no problems, peed, and went right back to sleep. Nights have been cooler and the air conditioning is off, so sleeping has been wonderful!

Day 32 begins!

Day 30

2010-06-28T18:50:00.000-07:00

Josh had a "fantastic" day at summer school! The note home said he breezed through the deskwork (and it looks great!), and had a terrific time working the "water wagon." Then they did an arts and craft project that he really liked (suprisingly!) - they made flowers! Hhhmm..!

Camp was a different story. Because today was a pool day, he didn't have the chance to take a little rest or power nap (he's needed that the last few days at camp). They wound up sitting in the shade and playing with the squirt bottle, then someone pooped in the pool and they had to get all the people out. Totally threw Josh since they had to gather up all the kids and get them back to the school building. His counselor said Josh had 4 PNES, and he had had one before the bus this a.m., and one in the car when I picked him up. I'm not sure if it's because he is not feeling well, or if he was over tired, or if it was just because it's a Monday, but I hope tomorrow will be better.

When he got home, though, great stuff happened. I was certain he would fall asleep - he even nodded off in the car on the way home. But, instead of falling asleep, he came in and laid down on the floor for about a minute. We talked for a little bit about how I really wish he had a faith in himself with the walking and peeing and stuff, that I have all the faith in the world in him and I know he can do so much if he would just let himself. I walked away and he got right up, into the bathroom, peed (a little too late, but oh well), and then wanted to watch TV. I put on a video but he wound up not even staying in the room - he came into the kitchen and actually helped make his dinner and get stuff to the table.

As we were eating, he started talking about the "boo boo Mobil" (it's a gas station near where we watch for trains - the car wash has never worked in 3 years!) and the "big book with the boo boo Mobil." I had no clue what he was talking about (although my Mom, when I told her, knew immediately what he was talking about!). He got up, went over to the book case, and came back with the spiral notebooks that we had been working on emotions. He found the picture we had drawn of the "boo boo Mobil" and he just started coloring and drawing pictures. The two of us drew pictures and talked for about 40 minutes!

Then, as I was cleaning up the dinner stuff, he wanted to play with his remote control train. So I helped him turn it on and he was perfectly content to play in the living room while I washed up the dishes and made some cookies - Josh really is not a "play by myself" kind of kid but he played all by himself, not asking me to come play with him, for about 20 minutes or so - a first!

As the cookies were baking, he asked me to come in and play the piano for him! OMG, he's never asked for that and even has said that the piano was too loud! So I sat and played for about a half hour or so, stopping to get the cookies out of the oven at one point. He was just listening to the music and playing with the train. After I had played a bit more, about ten to 8 or so, I looked over and he was asleep, and still pressing the remote buttons on the train! LOL! So, I let him sleep a bit and then got him up to bed, and we read Night Lights and Pillow Fights. He fell asleep during the one about Prince Strongheart.

So, while the middle part of the day was not great, the beginning and ending were! I can't figure out why he's tired - with the NV, I would think he wouldn't be. But, he is still holding his mouth that funny way he does when he isn't feeling quite right, so maybe there is something going on - just wish I could figure out what.

So, tomorrow is one full month on NV. I've seen, and others have seen, changes. I am hopeful that progress will continue! Tomorrow - Day 31!

Day 29 and 30

2010-06-28T03:36:00.001-07:00

Josh had no PNES on Saturday and only one yesterday, Day 29 - when he went to the bathroom to pee (that subject again!). Interesting, he went into the PNES and moved himself out of the bathroom - I looked at him, said if he was able to move out of the bathroom, then he was OK to stand to pee. The PNES stopped within a second or two, and he got up to pee (before he had an accident). Josh had gotten up just fine in the a.m. and was really looking forward to Gramma Bev and Boompah coming for the day. But, after they got here and he was downstairs for awhile, and I asked him if he needed to pee, he became very anxious about going to the bathroom - he did it but he clearly was panicking about it. It was the second time, later in the day, that he had the PNES when going to pee. Of course, when it was time for bed, he had fallen asleep on the couch and, after I woke him to go up to bed, he did it without any problem and peed before getting ready for bed, again without any problem. Weird.

Josh spent a great deal of the day yesterday keeping Gramma occupied! They played War, mini-basketball, bean toss, flip the hat, played with his remote control train - very active, talkative, and no nap at all! He fell asleep (on the couch) around 8:00 or so last night - so I think the NV is kicking in again after not having it last weekend. Saturday had turned out to be a lazy day for both of us, we played War and a couple of other games, but just really vegged out for the day - we even both had long naps. Neither one of us had slept well "camping out" Friday into Sat. because of the thunder storms during the night so I think we were making up for the lack of sleep during the day on Sat. I'm hoping the rainy days are gone for awhile, and the temps are supposed to come down a bit. We'll see if the change in weather has an effect on Josh as well.

Almost a full month on NV - Day 30 begins!

Day 28

2010-06-26T08:02:00.000-07:00

Man, I would have never admitted how dependent I am on the darn computer, but I am! We had a lightening strike on Wednesday (Day 25) and our Comcast went completely out - no landline phone, no cable, no internet! Thank goodness we have the cellphone on AT&T!

Poor Josh, he was sitting on the pot when the thunder clap and lightening strike hit, and I was stepping out of the shower! It was soooo loud, he jumped up off the pot, hands over his ears, and ran into his bedroom "to hide." The rest of his day that day was off, understandably so, but not as difficult as Tuesday had been at school and camp. Thursday (Day 26), there was a change in the morning bus - different driver, different style of bus, different kids. Not sure why, but I think it had to do with a couple of the other kids pulling out of summer school or something (just a guess). Josh did great, though, getting on and off the bus, and had a great day at both school and camp. He is just breezing through the schoolwork, including spotting sightwords in some reading materials. They do what's called "News2You" - it's current events stories using words and PECS. Once the stories are read, there are work pages relating to the stories and determining the kids' comprehension. I like reading the stories when he brings them home! He did great with the sightwords, underlining all of them throughout a multi-page article. He also has been doing time-telling, money work, and the like. His camp counselor wrote that he had such fun at camp, she winds up running all over the building with him, searching out the vacuums! Josh has a new game with the afternoon camp van driver - they play "volleydog" with Josh's stuffed "grad dog." That poor thing, gets volleyed over the van, into the street, wherever! But, Nicole and Erin (the driver and aide) have such fun playing with Josh and getting him laughing - they just love hearing him with his belly-laughs and watching his face! :-)

We went to Gramma and Boompah's for dinner after camp on Thursday - absolutely no problems getting out of the car, into their house, and even going to pee. Josh had to take their vacuum out, of course, and ate a huge dinner - roast pork, sweet potatoes, brussel sprouts, red cabbage! Yum!! Absolutely no problems or hesitation getting into the house when we got home. We were both pretty tired so we both just went up to bed.

Yesterday, Day 27, Francis was here to kidsit in the a.m. until after lunch. Francis is great, relates incredibly well to Josh, but tends to feed him too much! I had left a morning snack out for him, with a couple of drink cups made up (one for snack, one for lunch), and then she was going to give him lunch (PBJ, of course!). When I got home, she said he had both of the drink cups plus another one (I'm thinkin' two more!), and she gave him the snack I left plus another, and then lunch and a cookie! Josh also knows that, even though there are tons of toys around and there's always the outdoors, she's content with sitting and talking with him. Talking is good, but I wish she could/would get him up and moving while talking! When I got home, I had office work to do so he sat around even more (yuck!), and then the lawn had to be mowed before the rain came again! We had a camp-out again last night - put the sleeping bags out, brought a blanket down for Josh, pillows, and I went to make popcorn (around 8:30 or so). By the time the popcorn was done in the microwave, he was almost asleep on the sleeping bags - hogging up both of them!! LOL! So, I just put a movie in for me (since the cable was still out!) and got to watch Forrest Gump - haven't seen that in so long. Josh watched the movie some at the beginning and really liked seeing Forrest walking with the braces on his legs, and then break free of them. He fell back to sleep, completely, before any of the scenes he probably shouldn't see yet, but, like the movie Radio, there were so many similarities with Josh, I spent quite a bit of time weeping. After that movie, I put in Best in Show, but fell asleep myself. Since Josh was hogging up the sleeping bags, I slept on the couch (aawww...). Unfortunately, storms hit again around 1:30 or so - thunder, lots of lightening, lots of rain. The rain on the skylights in the family room is very loud, and we obviously could see all the lightening that way also. So, neither one of us got a very good night's sleep. I think we're in for more rain today/tonight/tomorrow. The mosquitos, as a result of the rain, are horrible, so we're spending a lot of time inside playing, out on the sunporch, and just hangin'.

So, today is Day 28. The Comcast guy has come, finally, and fixed our systems. Seems the lightening strike fried a splitter, or something like that, and he replaced it along with the cable box from upstairs. He did something with the modem and router, and now everything is working just jim-dandy. The landline phone is even working better than it had been before the lightening, and, because the splitter problem is common and their fault (as the guy said), we're getting 90 days of free HBO - whoo hoo!

Josh is having peeing issues today, had some a little bit yesterday as well. He's fine first thing in the a.m., he's fine going at school, fine in the evening when going to bed, but it's that in-between time that he just doesn't want to go in the bathroom. It had been better before we ran out of the NV, so I'm hoping since this is the week after getting back on it, that things will get better in a couple of days again.

Josh seems to be paying a lot more attention to things - he always did, and he would notice things around him all the time - but now he's making connections between what he is seeing and other things - making comparisons. But, what I am noticing is that he is almost holding his breath when he is talking, so the words are not coming out as well. It's like he's got so much to say, that he gets "caught up." I have to keep reminding him to "breath while you're talking," "take a breath," etc. He was telling me something last night about Francis and mowing the lawn and going to her house next Friday and, yeesh, about four other things, in one really long run-on sentence/paragraph! (He is intent on going to Francis' house next Friday rather than her coming her - don't know if they talked about that yesterday, I'm not sure, but he sure is talking about it it a lot with me! - she's got an older dog that Josh might just drive crazy!) Then he was comparing Francis' mowing the lawn to me mowing the lawn, and her garbage company with ours, and so on. He's watching a movie right now - The Trains of Galesburg - and he's just doing almost a running commentary on it, and throwing in comparisons to trains that we've seen recently in Hinsdale and Elmhurst, and looking for the various trains he's seeing in the movie in his train magazines.

Josh has always been a good eater, and will eat anything (as long as there's applesauce with it) except grapefruit, pretty much. But last night we had "halibut presents" (halibut, veggies, onions, and a few potato slices wrapped up in foil packages with spices and cooked in the oven) - first time he's had halibut, I think - and he just gobbled it up! I'm glad he's a fish lover - we've had all types of fish now, although he's not as crazy about seafood - and loves chicken, turkey, and pork. We don't do a lot of beef, and, in fact, many of our meals are vegetarian. Don't know why I brought this up except I was surprised at how well he liked the halibut!

So, we'll see how the rest of today goes with both of us being tuckered. It's only 10:30-ish and, personally, I'm ready for a snooze! Gramma and Boompah are coming tomorrow to hang out. The sun is out now, although it's pretty dang hot, so if we both don't just crash, we'll try to get out for a walk or something. I'd take him over to the beach but it was soooo crowded yesterday, if today is anything like yesterday, we wouldn't even be able to park! Maybe the sprinkler or squirt gun he got for his birthday.... Sure is nice to have the internet back!!

Day 24 (con't)

2010-06-22T17:38:00.000-07:00

I'm sitting here looking at Josh sound asleep on the couch - and he fell asleep around 7:10p.m. This is the earliest he has fallen asleep since starting on NV (last night he fell asleep around 7:30 - he had been up and with energy until 8:30 or even later - he was up until after the drive-in movie started at 9:30 on Sat. night) - and camp folks said for the first time since camp started he napped for about 45 minutes during the day as well. Now, it could be that the house was hot and muggy during the night so he didn't get a good night's sleep, or it could be that it was 90 degrees with a heat index of 96 and muggy during the day today - mugginess affects him most likely due to the hypotonia - but this is really different.

And, camp folks said, for the first time, Josh hit his camp counselor and pulled her hair. I don't know what the circumstances were, but she said he apologized and blew her kisses afterward. Now, that also could have been due to the heat if they were outside, but, as I said, I don't know the circumstances. He also had a PNES both this a.m. before going out to the bus and getting into the car when the camp van dropped him off after camp. Now, that latter one could also be because I accidently scared him (I had gone to put stuff in the car and came back without him expecting me - startled him a lot - which, in an of itself, seemed quite the over-reaction, but then he walked over to the car and when he sat down, went into a PNES -very short, but definitely a PNES) and, if I remember (without looking at it again), camp folks said he had a PNES during the camp time. Hhhmmm...

So, I'm wondering if there is a "lag time" - it might take the body a day or two to either get the NV out of the system, then a day or two to get it back into the system. The fact that NV seemed to have an effect about a day or day and a half after starting it, if I recall (should look back on this blog!) would substantiate that idea. So, I'm hoping tomorrow he heads back to the "new normal."

Tomorrow, Day 25!

Day 23 and 24

2010-06-22T03:49:00.000-07:00

Could have been because it was a Monday (notoriously difficult for Josh) or because of the lack of NV over the weekend into Monday, but school and camp folks noted that Josh was not the same - "not in his element" one person said. He got on/off the bus OK, even got on the bus with camp to go to the pool (although didn't make it into the pool - baby steps here - public pools are not really Josh's thing!), but was different.

But, the NV was waiting for us on the front porch - YEAH!!! So he had a serving last night and we're back on track as of today.

I noticed yesterday when I picked Josh up from camp that he was holding his mouth weird - he does that when something is hurting him or he's not feeling well. I kept asking if he was OK and he said yes, but the mouth thing was buggin' me. We'll see if he's doing it today. It could be that darn tooth is still coming in.

Another thing I've noticed over the weekend is that Sunday and yesterday he had no PNES, and the one on Saturday was very, very short. He seems to have gone to short almost panic/anxiety attacks without all the drama of the PNES. Don't know if that's a result of the NV or that he is just "getting over" the PNES. At his psychologist's suggestion, I made an appointment with another psychiatrist for more intensive work (and finally some neuropsych testing - he hasn't had any since he was much younger and we were in Ottawa - he needs more up to date testing). The appointment isn't until July but I'll certainly talk to her about the NV then.

Day 23 is over, we're back on the NV, and Day 24 begins!

Day 23 and 24

2010-06-21T03:57:00.000-07:00

Well, I don't know if it's the lack of NV or just Josh being tired but there were things that happened that are curious. Josh was very uncooperative in getting out of bed yesterday but once up he was OK. Then he was uncooperative a couple of times in going to pee again, although two other times he went without hesitation. What was most noticeable was that his speech was less understandable. And, he had an absence seizure (pretty sure) during dinner with Gramma and Boompah, and we were goofing around after dinner having arm wrestling (he's never done arm wrestling - was pretty good and beat me 3 times!) but it was like he got completely overwhelmed with everyone cheering his wins and he had almost a panic/anxiety type attack - not a full blown PNES, but panic. Weird.

Sure hope the NV arrives today! Day 24 begins. I've asked summer school and camp folks to let me know if they notice anything so we'll see!

Day 22 and 23

2010-06-20T05:13:00.001-07:00

Yesterday was so much fun! Josh was all excited about the train hunting and was up at 5:26 (darn digital clocks!) rarin' to go. So, we were out the door at 6:55. We got to the lab by 7:10 and, with only a minor hesitation and one need to sit down to "regroup," we were in the lab by 7:15. We had tried to get the lab work done first - he had to fast for that. But, the lab tech was all by herself, she was tiny (Josh was almost a good foot taller than her and probably weighed more than her as well!), and, even though I was sure I could hold Josh's arm still enough for her, she was nervous about taking blood from him. So, we will have to go on a different day when there are more techs there to help out. Oh well. We were on the road to Hinsdale at 7:25.

We got to Hinsdale, to the park right next to the tracks, and we had our breakfast as we watched trains. Bummer of a BNSF day - we wound up staying there until almost 10:30 - we even walked around the park a bit for awhile - and saw only Metras and one BNSF train that was only three engines and no other cars. We had fun watching the guys doing some gardening nearby - Josh has been enamored with lawn mowers lately so he was in heaven watching the guys doing the "standing" mower. There was even a "boompah guy" - apparently the homeowner - who was busy supervising the poor guys trying to do their jobs. ;-) The people and dog watching was fun, too. There are just some people who shouldn't wear spandex jogging outfits! But, the most exciting thing was the walking around the park. The last time we went to Hinsdale, as I wrote yesterday it was probably a year or more ago, Josh wouldn't get out of the car at all. Even when we've gone train hunting more recently, he will not get out, just sits in the car. The fact that he got out yesterday - there was some hesitation and he did need to "regroup" by sitting on a picnic table bench at one point - and was walking around the hilly park just great! I remember the first time we went to Hinsdale, I had brought with a ball or two and a blanket - we had tossed the ball around and played some soccer, but things had changed especially after the broken leg last Fall. With him getting out yesterday, I think we're on the way back to being able to bring that ball and blanket again! Yeah!

After doing the walk in the park and waiting for more BNSF's that didn't show, Josh said he wanted to go see the Union Pacifics ("yellow pacifics") in Elmhurst. So, we went there and wound up having a lunch picnic. There were some train fanatics there - these people are nuts! One guy was walking around with a slr camera, walkie talkie, telephone in his ear, notepad, and huge camera bag on his back, another guy had his tripod all set up, and there was a "boompah guy and lady" sitting on a park bench with their slr's out and ready. We always see lots of UPs, and yesterday was great for it. We were sitting probably only about 10 feet from the tracks and the trains were great! I can't believe I just wrote that! LOL! But, Josh had a great time and, around 12:45 I said I had had enough, that I was tuckered out. So we went home and we both just crashed. We got home just about 2:00 and I think we were both snoozing by probably 2:15! Before laying down, though, Josh went into the bathroom - AND PEED without me having to remind him! Yeah!!!

I woke up before him and, when he woke up it was about time to think about dinner. He wanted pancakes so I made some up (without setting off the smoke alarm for once!). It was so nice out, I just didn't want to sit around the house so I suggested going to the drive-in to see a movie! Toy Story 3 was playing. Josh doesn't like movie theaters (although I keep trying and he did go see a movie with his class this year) so he was not crazy about the idea. I explained that a drive-in means we get to just sit in the car and, after some initial hesitation, we went. Boy was that fun! He as cracking up at all the kids he saw sitting on top of their vans, all the dogs that were there, and even had some pizza from the concession. The movie didn't actually start until almost 9:30 but he was awake and at least saw the start of the movie. He fell asleep about 1/2 way through but it was a good movie, even brought a couple of tears to my eyes at the end. It's a shame the movie was so late - there's a lot of stuff toward the end with garbage trucks, a garbage dump, and stuff like that - Josh would have like that, so I'm going to have to get a copy when it comes out or at least watch it with him when it comes on On Demand. We got home around 11:30 and he came in, went right upstairs, PEED!, and fell right back to sleep.

Of course, he was up at his usual time - 5:30-ish. I told him to go pee and we'd go back to sleep for awhile since it was so early. There's a scene in A League of Their Own where the Tom Hanks character, after a night of drinking, goes into the bathroom in the locker room and the Madonna character times him peeing - that's all I could think of! LOL! He must have peed for a good 2 minutes! But, he did go back to sleep and he is still sleeping now, about 7:40 a.m.

We're totally out of NV today and it won't come until tomorrow. Yesterday he wound up getting one serving divided between a.m. and p.m. We'll see what happens today and tomorrow until the shipment comes tomorrow (I hope). I think another week on NV and I'll reintroduce the fish oils. I had stopped the fish oils when Josh had his tonsils out two years ago (surgeon told me to) and I've only done them sporadically since then. Maybe with the combination of the NV and fish oils there will be even more surges and progress. I'm going to have to be creative, I think, in giving the fish oils, though. Since Josh started taking the Keppra for the epilepsy he has been resistant to taking any other meds. When he had his bronchitis and flu in December he was really difficult about taking the antibiotic they put him on - he did it, but it was tough. He'd take the Keppra, then put up a fuss about the antibiotic. So, with the taste of the fish oils and it being another "pill," this could be tough. Maybe if I remind him they are the "magic" fish oils that help him with talking he'll by OK with it... time will tell.

Day 23, Father's Day, begins! Gramma and Boompah will be here for a BBQ, and it's supposed to maybe rain/be hot. Hopefully the lack of NV will not have too much effect but, again, we'll see!

HAPPY FATHER'S DAY EVERYONE!!

Day 21

2010-06-18T18:35:00.000-07:00

I have to say that today has completely convinced me that the NV is having the effects I have been talking about. This was Josh's first full day of camp. The camp was sponsored by one of Illinois' special rec associations. When I first signed Josh up for the camp, I had spoken at length with one of the rec's reps. After talking about Josh's special needs and the things he had been going through at the time (hit a bus transportation person, having trouble getting on/off the bus, laying down on the ground when overwhelmed, the frequency of the psychogenic non-epileptic seizures, etc.), we decided to sign Josh up for camps that were close to home in the event I would have to come pick him up. The camp today was all about environmental adventures - something Josh isn't that crazy about to begin with but that I felt would be "good" for him. As it turned out, the campers were going to get on/off the bus 4 times, including once at a restaurant for ice cream. Well, Josh doesn't do restaurants that are crowded (and this one would be), and he doesn't eat cold things (sensory issues) so I had my doubts about at least that part of the day, let alone the idea of on/off buses that many times. For the last several weeks, I had been planning my own work at the office to allow me to take work home should I need to get Josh.

Gotta say, my guy was amazing today! I decided to take him to Elgin to get on the bus - less kids, a bit more time to talk with the driver and bus aide, get him settled on the bus. We stopped off at a bagel place to get snacks for the office, stopped at the office to drop them off, then went to have a breakfast car picnic while waiting for the bus. The bus arrived at 8:40 and there were three or four other kids to get on. Josh hesitated maybe 1 minute in the car, had a very short PNES (less than a minute, I think), got right on the bus, said hello to the driver and aide, sat down in the first seat (his usual bus spot), and let the aide - a complete stranger - help him with the seatbelt without incident. I got no calls from the camp all day!

The bus had picked up some more kids along the way and then went to the first of the nature centers in McHenry. They were there for a couple of hours, then went to the next - the Algonquin Water Conservancy. Then they were going to one more nature place in Crystal Lake, and the restaurant. The camp folks decided that Josh could hang at the camp offices in their lounge, watch a movie or whatever, while the others went to the restaurant, and that was fine with me. He had a great time all day! I don't know how involved he was with all the things they actually did at these places but, gosh almighty, he made it through the whole day and they made it through the day with him!

When it came time to pick him up at 4:45 the weather had turned horrible - bad storms, hurricane force winds, sky as dark as night, thunder, lightening. I had actually called the camp just to find out what they were going to do in the event the kids got caught outside and the person I spoke with said she had actually gotten a report back that Josh was doing just great, even with all the on/off the buses. By the time the bus arrived, the rain had let up a little and I was standing outside the bus. I saw two of the other kids stand right in Josh's space (he was sitting in the aisle seat rather than closer to the window) and all I could think of was, omg, this is bad (when kids stand in his space, he has been known to pull hair or hit rather than use his words "move please"). What I saw blew my mind - Josh sat there, hands down, turned to the kid closest to him and was talking to him! Never, never have I seen that! Josh has always related better to adults than kids, although his teacher this year said that Josh would talk with one kid in particular at school, even asking him to come to Josh's table to play. But I saw it today - he is relating to kids! YEAH!!! Josh didn't want to get off the bus - the rain and thunder - but it took less than three minutes for him to get up, and then run to our car! And, when we got home, less than a minute to get out of the car and into the house - he did lay down for all of about 30 seconds on the floor, but then got up and went right into the bathroom - AND PEED!!! I had put him in double depends and underpants this a.m., not knowing what the bathroom situation was going to be while out and about with camp. He must have gone to pee during the day - the one depends was barely wet, and everything else was dry. Whoo hoo!!!!

Tomorrow, we celebrate! This week has been so amazing for him, he has done so much, accomplished so much (for him) - I am going to get him over to the lab for the blood tests (finally) but then we're going major train hunting. I had suggested we go to Rochelle again but he said, "No, Hindale, Burlington trains!" We haven't been to Hinsdale in probably over a year but it is a great spot to watch BNSF trains and, weather allowing, have a picnic. So, at his request, we will have PBJ sammies and watch the BNSF trains!

Funny story - Josh is still watching the Blue's Clues, although less - he's just busy doing other things. But, tonight he wanted to watch one of the episodes on On Demand - Cafe Blue. I was reading the synopsis of the episode to him with a French (horrible) accent, and he was correcting me on my words! LOL!!

I have one serving left of NV until the new stuff comes on Monday (I hope) - so I divvied it up into three cups, made up the rest of the 8 oz with just milk, and I hope that just keeping some in his system until Monday will not make too much of a difference in all that I've been seeing. Can't wait for Monday's UPS delivery!!!!

Tomorrow, Day 22 and trains! Storms are starting again - severe thunderstorm warnings are up still. Better shut down the computer before something blows!

Day 20

2010-06-17T19:09:00.000-07:00

Another "awesome" day! Josh is doing so great at summer school - another day of moving quickly through the school work, walking around a lot, no problems doing the bathroom thing at summer school - the notes that are coming home are just amazing!

And, I spoke more with the camp folks about tomorrow's Friday Field Trip, and about strategies, ideas, whatevers to get Josh into the van to come home from camp during the rest of the week. The note that came home today was that Josh was incredible! Sociable, attentive, involved, funny, cheerful, active. When I spoke with the site director, I asked if he's walking around and she laughed - she said Mon. and Tues. he wasn't, yesterday he did some, but today, as I was talking to her, he was just the social butterfly! They are encouraged about getting him to the pool next week. And, they said they used some of the suggestions I made and, voila!, less than three minutes to get into the van. In fact, the driver called me at the office to say that he got in so well, and she didn't have one of the kids to drop off, that they were going to be early at the drop-off site! Of course, he wouldn't get out of the car at home when we got here (we celebrated his day by going to watch trains in Elgin and have a dinner picnic) but that was probably because I was mowing the lawn! He was great going up to bed - he did fall asleep once in the house, on the floor, but I woke him up and, again voila!, right up to bed!

I'm so excited about the changes happening - the transition to camp, in other years, never went this smoothly! Again, don't know if it's really the NV but, unless there's a shipment at my door tomorrow, we'll find out! The last of the NV at home is in his sip cups, waiting for tomorrow but then we're out - I really, really, really hope it comes tomorrow!!

Big day tomorrow - Day 21 - three weeks on NV and full day of active camp. Phew!

Day 19

2010-06-16T17:15:00.001-07:00

Josh is really good at getting up, into the bathroom, and doing what he needs to do (!) first thing in the a.m. The folks at summer school said they have no problem getting him into the bathroom and walking all over the school. I guess yesterday they had a toad and Josh had a kick touching it - nothing major, you say? WRONG!! OMG, the idea of Josh touching an animal like a toad is just amazing! They also gave Josh the job on Monday of "selling" gloves around the school - not sure what that means but he liked doing it! Today, the summer school folks said Josh "breezed through" the school work (incredible!), transitioned perfectly from one task to another (another amazing accomplishment!), and worked really well all morning. The paperwork he came home with had perfectly written letters and numbers - I'm thinkin' a little hand-over-hand work on those since his handwriting as of last week left a whole lot to be desired! But, just letting someone do the hand-over-hand is quite an accomplishment! And, he also did a coloring thing where there is a "puzzle" - this was a crown - and he had to match the numbers in the different areas with a color assigned to that number - I think he did it pretty much on his own - the colors all matched the numbers but staying in the lines wasn't there. A boy after my own heart! Nothing like coloring outside the lines! LOL!

Camp was pretty good but they never got him over to the pool today. Stephanie wrote that he was really stressed out about getting on the bus to go to the pool so she stayed back with him at the building. They took out the vacuum, though, and actually had it on! He said on the way home that it was "youd!" but he was pushing it! YEAH!! Other than the bus thing/not going to the pool thing, he had a terrific day at camp - attentive, involved, talkative, cheerful, and funny - I guess he was making everybody crack up! Getting in the van to come home after camp is tough - it's just like a regular van so I'm not sure what the problem is. Fortunately, Nicole and Erin are incredibly patient, and Erin has already gotten the hang of helping Josh with his seatbelt. Nicole has some ideas and I forgot to talk to her about the reward idea. I can give her all the mardi gras beads Josh earned from the school year bus driver! Recycling! Josh also, after only three days, knows the route home and who gets off where!

When we got home, he came in with just a little bit of hesitation and laid down on the floor in the family room - I think mostly because he is pretty tired. He is not taking a snooze during the day from what I can gather - another major accomplishment! Anyhow, I was going up to change into shorts and by the time I got from the back door to the staircase, he was up and going into the bathroom - TO PEE!!!! YEAH!!!!!! He had peed just a little bit in his pants so we changed into the depends for bedtime, but YEAH!!!!

I'm not sure if the Friday Field Trips for camp are going to work. They called this a.m. and they are, understandably, pretty nervous about the bus situation. The field trip this Friday involves getting in/out of the bus 4 separate times at different places. We talked at length about why this anxiety is likely there, and I'll talk to the driver and bus aide about strategies for during the day, but I also told them I'd be available in the event I need to come pick him up. I also said that one of the on/off times is at a Colonial Cafe for ice cream - Josh doesn't do restaurants unless they're pretty empty or quiet, and he doesn't eat ice cream, so I said maybe he could hang back on the bus and rest during that time? They would consider it. When we were arranging the Friday deals, we sort of thought keeping him local would work best (some the field trips are quite a distance - one is to Milwaukee!) since, if something went wrong or he was having just too tough a time, I could come get him. But getting on/off so many times - this could be tough. And, it's supposed to be pretty hot, possible rainy, and each of the stops is something environmental (the theme is environmental explorers) so I think outside with lots of walking - hhmmmm.... I said I'd hate to deprive him of the opportunity to give it a try so we will go ahead and do the trip this Friday. We'll see!

I think I've got enough NV for one more day - sure hope it comes tomorrow!!!! I'm seeing so many things, some subtle, some pretty obvious. I was talking to Barry about it yesterday and he said maybe it's just that Josh is growing out of some of the things that have been problematic. I don't know, it's pretty coincidental that so much has changed in such a short time, and since starting on the NV. Obviously, the only way to see if it's the NV that is having an effect is to stop it for awhile but, gosh, I simply don't want to see the progress stop or have regression.

So, we will proceed on this journey. Josh has been through so much over all these years, has had to deal with so many things, and has always risen to the occasion. Using NV is yet another leg of the journey - who knows where this will lead but I like what I'm seeing along this way.

Tomorrow, Day 20.

Day 18

2010-06-15T19:13:00.000-07:00

Wow! Josh woke up this a.m. itching to get downstairs to open the UPS box from Lakeshore Learning, and then he played with the kitchen stuff while he ate breakfast! Then Josh took the bus today to summer school with minimal problem - only a very, very short PNES prior to going outside. He was a bit hesitant getting on the bus, but I think it went fine afterward! The note from school was that they had music therapy and he had a blast - playing all the instruments, having a lot of fun. The note from camp was that it was a complete turnaround from yesterday - no hitting today, explored the school building, watched a movie, was involved, curious, inquisitive, talkative, and cheerful - YEAH!! Yesterday, the note was that Stephanie observed a couple of very short absence seizures (maybe), and three PNES - today only one short PNES. YEAH!! Ate all his lunch - except the salad again! Oh well, tomorrow I'll put some other veggie in or some fruit, so we'll see how that goes.

The van driver this afternoon said there was a little delay because it took him a bit to transition from the camp to getting on the bus, but tomorrow they will get him out a little bit earlier. She said he did have what appeared to be a PNES but by the time the other kids got on the van, he was up and rarin' to go. When I met the van, it was pouring rain so he was hesitant to get out of the van, but he did within just a few minutes. He had what appeared to be the start of a PNES but it didn't last long and he walked right over to the car.

We went to Gramma and Boompah's for dinner. The last time we went there it took him about an hour to get out of the car and, when we were leaving, he had a major meltdown and huge PNES. Tonight, just a momentary hesitation getting out of the car, walked right in and to the bathroom to pee (a little late but at least he went!), got the vacuum out of their closet and was goofing around with the vacuum while he had some milk. He ate a HUGE dinner - pork chops, sweet potato, mixed veggies, salad, bread with a bit of jelly. When it came time to leave, he was a little bit more hesitant (by then he was really tired - he's not snoozing at all during the day - that's definitely new since on the NV!) but eventually got up, walked right out, no problem.

When we got home, he played with the kitchen stuff again, even turning on the blender all by himself and watched the water blend around in it. The thing makes noise almost as loud as the real blender but he actually played with it. The little coffee maker even drips water - he got a kick out of that but didn't quite get it that you have to leave the coffee pot in the machine - oh well, he'll get the hang of it. He had his NV and meds, and then went to watch a Blue's before bed. I ran upstairs to change clothes and, by the time I came back down, he was sound asleep on the couch. I let him rest there a bit and then woke him to go upstairs - absolutely no problem with it - went right into the living room to get Teddy and Gino, walked right upstairs, right into the bathroom, and into bed - sound asleep within seconds.

Tomorrow is pool day for camp - we'll see how that goes! Seems like he might have a little cold - happens when he's in air conditioning, which we had on a few days ago when it was so hot and humid. Back to fresh air, though, so hopefully the cold won't last long. Usually he is so wiped out when he has a cold but he seems to have a lot of energy.

Generally, Josh just seems more calm, more "in tune" with himself, has more energy, and is just more agreeable. I don't know if it's the NV or him coming out of whatever the "funk" was that he was in, but it is really nice!

Tomorrow - Day 19.

Day 17

2010-06-14T17:07:00.000-07:00

Well, I don't think the first day of summer school/camp was too bad.... maybe. The day started out with the bus folks calling to say the bus aide baled so could I drive Josh to summer school. No problem, things happen, and he was probably happier riding in "the buffalo" than meeting new folks on the bus - but that will hopefully happen tomorrow. I didn't get any calls from school or camp - that's a good thing. And, there were no notes in the backpack - although there was an American flag he made for flag day and a story about flag day! But, the afternoon ride home from camp was about 20 minutes late. When they finally arrived at the drop off site, the driver and aide were very friendly, and were very understanding. They had started off anticipating Josh would sit in the front passenger seat (now that he's 12 and can), but he wasn't handling it well when the van would stop to drop other kids off. So, when a spot opened, they moved him to the middle passenger side seat and he did better there. He was still a little "swatty," but they said it was perfectly understandable since it was the first day and there were so many new things. I'll have to give them the suggestions about "high fiving" it if he starts to swat, maybe do a reward system, have a Blue's Clues book available for him, etc.

The note from the camp aide - well, let's just hope he gets used to camp again. Stephanie circled that he was cheerful and inquisitive, but getting him up to walk and move was tough. He played catch, apparently while sitting, he ate most of his lunch (man, kids, didn't even touch the salad I put in!! LOL!), but I don't think they could get him into the bathroom and they used a chair on wheels if they needed to move around a lot. I think after a day or two he'll be up and around (I hope, I hope, I hope) - this was just a lot to deal with today. Stephanie may call tonight so we can talk about ideas.

On our way home, he said he wanted to stop in at Gramma's and Boompah's (he specifically asked to go the route that would take us past their house) but I said maybe tomorrow. Then we passed the railroad tracks where Gramma and Boompah said they saw the "ghost trains" - he knew exactly where it was even though we weren't with them when they saw the "ghost train."
I just talked to them and we will stop there tomorrow for dinner.

When we got home, Josh was a little hesitant to come in (even though the box arrived from Lakeshore Learning! yeah!!) but did in just a few minutes, then laid down on the floor - he's wiped. We've been home maybe and hour and a half, he's been sleeping for most of that! Busy day!

We'll see how tomorrow is - day 18. Hope the NV comes soon - we're running low on it!

Day 15 and 16

2010-06-13T20:02:00.000-07:00

Well, Day 15 certainly was quiet - in fact Josh didn't come downstairs until almost 2:30 in the afternoon! He just wouldn't get up. He's done this once or twice before here at home - don't know if it's the lack of routine when we're home on "lazy days," or stubbornness, or what. He will say he's mad about something, but not always what it is he's mad at.

Anyhow, once he finally did come downstairs, he finally ate and drank something. Then we made an errand run over to the little general store by the lake, then sat and watched the boats (not too many people actually in the water - it was pretty cool yesterday) for awhile. After dinner, he fell asleep on the couch while I was doing dishes - woke him and he got upstairs without any problem, peed in the bathroom, went right back to sleep. In fact, he went to bed at 9:00 or so, I went to bed shortly after.

Ordered more NV - both chocolate and the vanilla.

Two things I've noticed in the last couple of days - he is walking more alternating feet going up the stairs - instead of the one step at a time thing. When Josh was recovering from the broke femur, the PTs said to do good leg up first, bad leg down first, one step at a time. He has been going up/down the stairs like that since January. But now he's doing alternating which is great!

Also, he had gotten a gift card from Lakeshore Learning from Uncle Barry and Aunt Linda. He spent hours - HOURS - looking through the catalog choosing what he wanted. He narrowed it down to three things - a post office play set, a cash register, or kitchen appliances (blender, mixer, and drip coffee pot) - he finally decided on the kitchen stuff (which should be delivered tomorrow). OK, why is this so exciting?? 1) Josh is usually totally freaked by the blender and mixer I use in the kitchen - to the extent that I don't use them when he's around (of course, I started using the blender for the NV and he's gotten to the point where he can be in the kitchen with it going now); 2) Josh has never spent time looking through any catalog, let alone to choose something from it; and 3) Josh has never been interested in imaginative play and all three of the things he narrowed his choice down to are used in imaginative, dramatic play! YEAH!!!!

Day 16 - once again, I think the peeing thing is behavioral/psychological - it's a matter of being afraid to go to the bathroom. Everytime it's time to get up to go pee, he'd go into a very, very short PNES (so there were three of them today - each less than 2 minutes, and the one this a.m. getting out of bed was probably less than 30 seconds). It's like he has to get the anxiety out because, as he is whenever there's a PNES, once it's over, he just gets up and goes about his business. Except, during these PNES, he will pee so by the time he goes in the bathroom, he's almost already done. I am doing the Depends on the outside of the underpants - it is saving on laundry (it's all laundry, but he has more underpants than shorts), and he's not getting embarassed by making his shorts wet. I also think he's not peeing as much during the PNES because he did pee in the bathroom some once it was over. I got the idea from another mom who went through a similar experience with her daughter - a teacher had recommended it to that mom. She said within just a few days, her daughter stopped the peeing in her pants. I'll try this for a bit, hopefully it will work. If not, I've got some other things to try. Josh has talked about what happened to him in a bathroom, even named the person who did it (hitting Josh, in a bathroom and in a "yittle room" in a different location) so if I can get him to talk more about it, maybe we'll be on the right track.

Gramma and Boompah were here today - our telephone died so I needed to go buy a new one. Gramma watched Josh while I went to the store and Boompah did their grocery shopping. Josh did great - he was dancing to the TV, goofing around saying the trains in the train movie were "running over" things in the room, etc. But, dinner time came and he wouldn't get up - probably because he knew I'd detour him to the bathroom, as I've done many times. He wound up not eating dinner (he had the NV, his meds, and a snack not long before dinner) so he didn't go hungry and, when it was time to go up to bed, he went up without too much problem.

Tomorrow is the start of summer school and the first of the camps - I spoke with the woman who will be Josh's aide for camp, Stephanie, and she will hopefully call back later tonight as well. There's a lot to talk about when it comes to my guy! Good thing - she's blonde! Josh has a soft spot in his heart for blondes!

Day 17 tomorrow - a big day!

Day 14 and 15

2010-06-12T05:42:00.000-07:00

We had a quiet day yesterday, Day 14. The day was going so well. Josh even was going to pee in the bathroom (that subject again!). When I would get him up to go, he would have just a moment or two where he would resist going, would even lay down on the floor, but no peeing on the couch or floor. After a minute or two, he would get up, I'd walk with him to the bathroom, and he would pee - a couple of times he sat instead of stood, but, hey, it worked. I did the reward thing - stickers each time. And, something that has not happened more than once before, he let me put one of those "tattoos" on his arm (spiderman)!

We had a pretty large turtle visit in the garden - pretty cool - it came strolling through the flowers and then freaked out when the cats saw it and started making noises. The poor thing ran into the lavendar and hid out. He came out again at one point and I tried to get a picture - Josh came to the door of the sun porch but he was kind of scared to come out to see it up close. It "ran" into the lavendar again and I haven't seen it since. We put out food for it so we'll see if it comes back.

But, in the evening, the family came over and things went down hill quickly. Of course, he had not snoozed all day so perhaps he was tired, perhaps it was a "show" for the family, but when I tried to get him up to pee before he ate dinner, absolutely no way. He layed down on the floor, on the blue hospital pad (I put that down, had the feeling he was going to not make it to the bathroom), wouldn't get up, then he moved the pad and started to pee on the floor. I lost it again, yelled at him, then had him just go upstairs. He wound up not even eating dinner. We've got apologizing to do with each other, again.

Hope Day 15 goes well - will be ordering more of the NV today since it does seem to be doing something for Josh. There have been so many positive changes in such a short time, my hope is that it will eventually have a positive affect on the peeing thing, and the reason for it.

Day 13 (con't)

2010-06-10T21:17:00.000-07:00

What a day! We went over to the summer school - once again, everyone seems to know Josh, he knows everyone, and I'm there saying "who are you?" ;-) Turns out he knows his summer school teacher. When Josh broke his femur last Fall during school, the district placed him at this school (it's the special ed coop - they provide the therapy services for numerous districts, and have a school in the coop building for those kids who need placement there) for safety purposes. He was the only kid in his class who, other than having the broken leg, was ambulatory and only one of two kids who were verbal - and I think it was a pleasant, and novel, change for the teacher he had at that time (who was fantastic with Josh). While he was at the coop/school, though, he got to know everyone and they certainly got to know him! So, he knows his summer school teacher from having been at the school, two of the aides in the class are ones from this school year (and who are great with Josh), there are two or three kids from his school year class who will be with him, and he'll be in the buildng he's familiar with - should work out just great. He had a great time showing me around the building (like I didn't know it!) and led the way to the classroom.

After going there, we had a breakfast picnic while watching for trains - didn't see any trains, only "ghost trains" (when the arms go down and no train shows up) and railroad repair trucks on the tracks.

After that we went to the drop-in kidcare place to drop off paperwork. He was pretty hesitant to go in, but once inside, he was fine. There were a couple of other kids there, we stayed for a little while, and then a young kid came in totally distraught that Mommy was leaving. Josh was getting pretty upset by the kids emotions so we left.

When we got home, we had a very short rough patch (again over peeing, which he ultimately did - in the bathroom!) and I just lost it - just broke down crying. I cried for quite awhile and then went to talk to Josh - we talked a lot about how I know he can pee in the toilet, that I have faith in him to be able to do it, that he needs to have faith in himself, that his legs are really strong so he doesn't need to worry about that (in case he is having doubts about the leg that had been injured) and the doctors say his leg is even stronger now than before he hurt it. And I told him that I think I've really reached my limit on it, that fighting about going to the bathroom is, in his words, "too much." We agreed again to try harder.

In the evening, I took Josh over to the kidcare drop-in center - I was going to dinner with the family for Dad's birthday and it was really an adult dinner at Capone's Hideaway (yum!). I was so incredibly nervous about leaving him there. Turns out I had nothing to be nervous about - he did such a great job and had so much fun! We originally thought he would be the only kid there but, as it turned out, there were six other kids in his room. I spent quite a long time with the caregiver who was going to work/hang with him - turns out her husband has seizures so she is well-aware of how to deal with them. And, the woman I spoke with the other day who knew so much about sensory issues and activities was there tonight. They put me totally at ease, Josh had some movies with him, the one caregiver was just wonderful with him (she also is involved with raising comfort dogs through her church - I said she really should see about bringing them into the schools for the special needs population!), and they were watching out for the other kids. I left, got into the car, and just starting sobbing! I think (and Mom thinks) it's because it's just such a relief to know there is someplace like this, where they are so open to having Josh in an inclusive setting, and who know what they are doing! When I picked him up after dinner, they had several pictures they took of Josh during the evening - one with him sitting on the couch with the other kids around him in their own chairs, all smiling, watching a movie together. He had such fun there (although he wouldn't eat his dinner with them - he gobbled that down as soon as we got home!), he didn't want to leave and, in the car, said he wanted to go back tomorrow (don't think so, but he will go back!)!

I don't know, maybe it's wishful thinking, but it seems like his ability to deal with the variety of things we did today, and especially the the new kidcare setting as well as he did would not have happened two weeks ago. Maybe Francis is right - that he is more "in control" of himself with the NV. And, he warmed up to and liked the woman who worked with him so much he asked her to walk out to the car with us. That's definitely not something he would have done two weeks ago. He also did not snooze at all during the day today - as I wrote before, he does seem to have more energy or at least is not as sleepy as before NV.

That being said, when we got home tonight, it was around 9:15. He ate his dinner, had something to drink, took his Keppra, and I said let's have a camp-out! He was really excited about it - I got the sleeping bags out, set them up on the floor, went up to change into my jammies and bring down some pillows and blankets, and he had a cookie while I washed the dishes. I then went to divvie up his meds which took all of about three minutes. When I came back to the family room, he was sound asleep on his sleeping bag.

Long, but good Day 13.

Day 13

2010-06-10T05:24:00.001-07:00

OK, after some helpful advice from folks at childrensapraxianet.com, I'm a bit calmer about the peeing thing (just hope I stay that way!). One mom told about her similar experience and the use of 5HTP/taurine that helped with the stress her little guy was having, and the peeing stopped after a short while. After researching 5HTP/taurine, and knowing that the tryptophan in 5HTP is already in NV (as well as the L-taurine), I'm just going to keep up with the NV and see if the peeing gets better.

Both the tryptophan and taurine can affect mood and anxiety (in a good way) - think of how you are after a Thanksgiving dinner. The tryptophan in the turkey usually mellows people out. (that's a simplistic way of comparing it, but that's the idea) With the stressors Josh is dealing with, perhaps the levels of tryptophan and L-taurine in the NV will help him - we'll see in time.

I know deep down that the peeing thing and the PNES (which, now that I think about it, he didn't have any yesterday! Wow!) are both reactions to the stressors and anxiety he is dealing with (for a lot of different reasons), so let's hope NV helps.

Yesterday ended on a positive note - after Josh did the peeing on the couch thing, he spent quite a bit of time on the toilet - a bit of diarrhea (which also could have been the reason for the peeing thing). When he was done, he was calmer and even took a snooze before Gramma, Boompah, Uncle Barry, and Aunt Linda got here. When he woke up, he went to pee in the bathroom (yeah!), he ate a little something (just some toast with cheese - didn't want to push anything with the diarrhea), sat up for just a little bit while we were visiting, and then went right up to bed (stopping to pee in the bathroom again! yeah!!).

There are just so many things going on in my kid's body and head. With him not being fully able to tell me what, many times it's just observation, experience, history, intuition, and educated guesswork that answer the questions. (Without any recognized "name" for all of his conditions, I've always referred to him as my enigma) Admittedly, sometimes I'm wrong, but generally I think I figure things out pretty well. I was wrong for losing my cool with him yesterday, and I told him that, but I also told him that it does make me angry when he doesn't get up to pee. We both ended the day saying we'd both try harder.

We'll see what today brings - we go meet his summer school teacher, I want to try to get him over to the drop-in kidcare place to leave the paperwork and give him the chance to see the place/meet the people, and, here's the tough one, he needs to go have a blood work-up. Yikes!

Day 13 begins.

Day 12 (con't)

2010-06-09T13:58:00.001-07:00

Man, I just am having a really hard time understanding this peeing thing! I came home today and Francis said she noticed some real changes in Josh - longer sentences, better articulation (she said she doesn't have to say, "try me again" and things like that), that he seems more "in control" of himself and has a "better aura" about him. So what the heck is going on with the peeing thing??? She left and I asked Josh to get up to pee - he wouldn't get up, and then rolled off the couch only to pee all over the side of the couch and on the carpet! I don't get it - he gets up every morning, goes right into the bathroom and stands to pee. But as the day goes on, he won't go into the bathroom, won't stand, won't pee in the toilet. Someone explain this to me!!!??!! There are so many things going on since starting the NV, could it be just that he is making progress in other areas so this has to regress? I don't know but this peeing thing started before even starting the NV so maybe it's not that. I'm completely frustrated with this!!!!

Day 11 into 12

2010-06-09T03:27:00.000-07:00

Yesterday, Day 11, was pretty quiet. I went to the office (finished a brief, yeah!) and Josh was home with Gramma and Boompah. Josh had refused to come up to bed the night of Day 10 so he slept downstairs. Yesterday morning, I got him up and upstairs, showered and dressed, and then he was OK for the day. Gramma said he was not very active all day - he layed on the couch a lot, had a good snooze, played with his baskets some. All in all, a pretty uneventful day.

Last evening, he was sitting on the couch after they left and said his ankle hurt (he was walking just fine and it appears to be just fine). So I sat with him on the couch and rubbed his back for awhile. He fell asleep around 9:00 or so, and I woke him to go up to bed - he went up without any problems, peed in the bathroom (yeah!), and fell right back to sleep. He had no PNES all day until one just before dinner. I think that was the only one yesterday (yeah!).

Josh was excited about Francis kidsitting today. She should be here around 8 this a.m. and I'll wind up working a little over 1/2 day at the office (balance of the day will be reading a transcript at home).

I want to take him later to the drop-in kidcare place to see how he does there (and drop off the paperwork for them). I found this drop-in place nearby - it seems like a great place for those times when I have to run an errand or do some shopping. The folks there were very knowledgeble about sensory issues (without any prompting, the woman suggested various activities that are good for sensory work! and they have therapy balls all over the place!) and were very open to Josh coming there. She said they have a couple of kids who are drop-ins that have autism - I said there is some lap-over with Josh's needs and they were very understanding and excited about meeting Josh! They asked for a copy of his IEP (they knew what that is without my having to tell them!) so they could implement some of the things and get a better understanding of where he is at. Wow! Uncle Barry and Aunt Linda are coming into town today so having this place to drop Josh for when we do the birthday dinner (more adult oriented) for Boompah could be a great thing.

Aunt Linda wants to learn more about the NV - when they get here I'll show her all the info and the ingredients and get her take on it as well as the other docs I've talked to about it. As a doc, she (and Uncle Barry) might have another take on it. Don't know if they've been following the blog here, but they are excited about seeing some of the changes so far in Josh. I told them it appears he's in the "week from heck" right now (I think), but we'll see what happens during their visit.

So, Day 12 begins.

Day 10

2010-06-07T17:44:00.000-07:00

This has been a rough day, Day 10. Several instances of extreme stubbornness, laying down, not going in to pee, only three PNES, but lots and lots of uncooperativeness, and, for the first time in ages, he hit at me. In a younger child, it would probably be considered tantrums so, from what other folks have written on childrensapraxianet.com, this seems to be the norm for this time period on NV. I can only hope and pray this comes to an end soon. School starts next Monday! I tried to time the NV start with this week of yuck now so that it may be over by the time summer school/camp starts. We'll see if I timed it right, and if Josh follows the pattern others have seen. Keep your fingers crossed.

We did go see Josh's new doc today - he's cool, younger, Josh seemed to like him. He had one of the PNES as we were getting out of the car (a bit on the "nerwous" side and overwhelmed). A couple of the doc's nurses came out to see if they could help - I explained what it was and said he'd be OK in a minute - he was and he walked in, all talkative, standard for the PNES routine. He had another one when it was time to leave the doc's office - doc saw it as well. Again, when it was over, he just got up and walked out, stopping to ask the girls at the front desk if they had a vacuum (!). The folks there were terrific, made no big deal about it all. Doc's appt was about an hour and a half - talking a lot about Josh's history and so on. Doc has confirmed (again - this is doc #5 to say this) that the PNES are not causing damage to the heart. As in any type of seizure, the heart beats faster, but it is not damaging to the heart itself. And, from what he saw when Josh had the PNES in the office, he's convinced, as is everyone, that they are a behavioral/emotional response and not a physical thing. We have to go for blood tests - that should be fun. I want to try to take him this Thursday but it will all depend on how his behaviors are - might have to wait until next Friday.

Doc took a look at the NV information - he sees nothing in it that is harmful, the protein levels look fine. He just said, diet-wise in general, to try to watch his fats and carb intake - which I try to do anyhow. My doc looked at the NV materials this a.m. at my doc appt. She said also that it all looks fine, nothing harmful for Josh and good for me to try it as weight loss aid, perhaps to bring sugars down more. She was impressed with the spices and ayurvedic ingredients. So, once again, listening to my heart/head seems to be the way to go!

Gramma and Boompah will be watching Josh tomorrow - I will be going to the office to hopefully finish a brief. Not sure what to expect.

Day 9

2010-06-06T17:08:00.000-07:00

Well, with Gramma and Boompah here yesterday, Day 8 was pretty good. Josh was in great mood all day. We were vacuuming the family room in anticipation of the new chair and he even did some of the vacuuming! With the vacuum on!! Whoo Hoo!! He didn't want to eat lunch and took a snooze while we ate. When he woke up he was a hungry pup. He ate really well at dinner. At one point during dinner, Josh made up his own joke (darned if I can't remember it right now!) - Mom and I just looked at each other and did one of those "whoa!" looks and we both said, "well, he's never made up his own joke before!" He showed Gramma the book with the emotions written in it, and then he took another spiral book and was "writing" things. Gramma and I were "testing" him on letter recognition and numbers, and writing them. He was doing very purposeful lines and was able to actually write several of the letters all on his own (without hand-over-hand help). He was engaging Boompah in conversation all day. Was just great until bedtime.

I know I should have just followed the routine we've gotten into - let him fall asleep downstairs and then, after about 15 minutes of sleeping, gently wake him and he'll go upstairs without any question or problem. I don't know what made me try to get him to go up especially while Gramma and Boompah were still here. It was a disaster, and he wound up doing what I should have done (without the hassles) - he fell asleep downstairs in the living room (on one of the hospital pads just in case - good call last night!). After they left and I took care of some stuff, I woke him and, with just a little resistance, he went up and to bed.

Today, Day 9, was not great. He got up this a.m., into the bathroom, and washed up. I knew something was up - he just didn't seem himself. Sure enough, when we were getting dressed, he just laid down on his bed and wouldn't move - all day! Fortunately, I "double bagged" him (in Depends) - I just had the feeling this was going to be one of those days, and it was. There was no way I was going to move him so I went and read the paper, read some of a book, mowed the lawn, trimmed the lilac tree and some boxwoods - all the while Josh was up in his room, laying down. I would go up to check on him on occasion - a couple of times he was asleep on the floor. Finally, I knew he would have peed through both of the Depends so I got him up (that was tough) and into the shower. In the shower he just broke down sobbing. In talking him through it, he said his tummy hurt and he was worried ("I worried. I nerwous"). I asked him what about and he said, "Mommy doctor." Oh man.

Last December I was taken to the hospital with chest pains (turned out to be costochondritis -and I was hospitalized for three days). But there he was, in his own hospital bed recovering from the broken leg and there I am being taken away in an ambulance. (2 really nice paramedics stayed with him until Gramma and Boompah got here, then Peter picked him up in the afternoon) We've talked a few times about how he felt that day - he has said he was scared, that he missed me. Lately, he's brought up the subject and said how he missed me when I was in the hospital. I knew it had to have had an effect but I didn't expect this today. From what he was saying today, he was worried about me going to the doctor (just a check-up tomorrow) and didn't want me to go to the hospital again. ("Mommy doctor, no go hospital") I tried to reassure him it was just a check-up, that I'm fine, and that my doctor doesn't have an elevator (when you go to the hospital, you go in an elevator - that's the connection he has made). Must have helped him feel at least a little better - he was still nervous finishing getting dressed, but calmed down as we talked more, and he came downstairs to eat at least a little something (it's now almost bedtime already!) - PBJ, of course, and one serving of the NV.

He's watching AirBuddies right now and looking at a book (that I've not seen him play with yet - it was a gift for his birthday - one of those books that you press a button when a certain picture turns up in the story), and he keeps looking over at me.

We'll see how bedtime goes tonight (whenever that will be!), but Day 9 certainly has been a mixed bag!

Day 8

2010-06-05T05:20:00.000-07:00

Yesterday was fantastic! Josh had a bit of a rough start to the day but then the rest of the day was just great. He didn't want to get out of bed but, after literally rolling off the bed, he got into the bathroom, washed himself up, etc., and we headed out. When we got to the office, he appeared to start to go into a PNES as we were getting out of the car. Carol arrived at the same time and she and I just walked into the office while Josh walked (no laying down!) onto the sidewalk and just leaned against the building, regrouping, as we call it. By the time I put stuff in my office and went back out to check on him, he was already inside, just fine, and talking to Tom. We parked ourselves in the library and ate the breakfast we brought with us. The rest of the morning, he was content to watch some Blues episodes while I read. Normally, he would be talking and preventing me from working much. But, yesterday, he let me read (got about 250 pages read during the morning). I had the sleeping bag all set up but he sat at the table with me the whole time. A couple of times I said we needed to get up and stretch so we would walk the length of the office. He had to say his hellos to everyone and this was the first time he didn't want to make a handprint picture on the copy machine! He didn't want to see trains yet so we ordered lunch in from Jimmy Johns - he had the provolone on grain bread - I toasted the bread in the toaster and then melted the cheese in the microwave so he had his ever lovin' "grilled" cheese sammie. After lunch, and another stroll around the office, he did snooze, letting me read another 250 pages! When he woke up, he sat up and said, "No hitting, no laying down, we go see trains!" So, we picked up his dinner at Boston Market (he loves the sweet potatoes and mac n' cheese) and watched trains until after 6, then we headed back home to catch some trains in Crystal Lake. We got home around 7:15 and he stayed up another hour and a half! When he hit the pillow at around 9:00, he fell right to sleep - I fell asleep shortly after that!

This a.m., I was having the weirdest dream with me having gone to some party with some guy. We left the party and were driving home in a convertible when it started snowing. We were reaching our hands up to catch the big, fat, white snowflakes when all of a sudden I felt a gentle "clunk" on my head - I thought the guy in the dream touched my head but NO! It was Josh - he came in to wake me up and was rubbing my head to wake me, saying, "I love you Mommy!" He climbed into bed (he always puts his head at the foot of the bed so I get his stinky feet by my head! LOL! Has to do with the angle/direction he gets into his own bed - that motor planning thing again), then he started stretching, and stood up and started doing exercises, saying several times "I love you Mommy" while exercising! He was stretching against the wall, bending over to do toe touches, etc., then came back to make sure I was awake (it was only 6:00 a.m. so I kind of wished he had let me sleep a bit longer but oh well). Granted, Gramma and Boompah are coming today and he's excited, but he has so much energy this a.m.!

We quickly got washed and dressed (he was completely dry this a.m.! yeah!!) and came downstairs. He's had his morning NV for Day 8 and he sitting watching some Blues. Day 8 begins!

Day 7

2010-06-04T04:02:00.000-07:00

After yesterday's not the greatest day, Josh and I sat at the dining room table (at least he was not sprawled on the couch!) last night chatting about whether he was upset about something and what may have been upsetting him during day. He did talk some, and then I did what was recommended in the Liberated Parent, Liberated Child book - I took out a clean spiral notebook and the markers and had him color/draw "angry," "sad," "happy," and so on. He started out just scribbling with a brown marker. Then I wrote the words "I'm mad" in red on a page, "I'm sad" in blue on another page, "I'm happy" in purple on another page, and "I'm sleepy" in gold on another page (OK, I snuck in some speech therapy during this, and some reading letters and sight words). As we talked about the feelings and drew the simple faces to go with them, he started opening up even more. And, all of a sudden, his scribbles turned into purposeful lines and shapes. At one point, he drew something on a page with some circles and an approximated rectangle. I asked him what it was and he said it was a train. Doesn't seem like much but this is the first time Josh has "drawn" something and put a name to what it was! So, out of the yucky day, there was quite a bit of progress, I think. Then we drew other things - signs, a RR crossing arm, etc. By the time we were done, he was back to being cooperative, went right upstairs to bed (it was close to 8:00), peed (in the bathroom!) along the way, and, after the usual back rub, he fell right to sleep.

I'm thinking he's peeing more (again the subject of peeing!) because maybe he's dropping some pounds on the NV. His appetite, while still good, is less than before. He's still getting the protein, vitamins, etc. since it's in the NV, and he is eating, just less. You lose weight, you drink more, you pee! Maybe for the time being I'll just stick with the Depends and cut him a little (little!) slack.

He was up early today - around 5 - so I'm wondering what Day 7 will bring. He is going to the office with me this a.m. I told him if he does a good job during the morning, we'll do lunch by the trains in Elgin. Don't know whether going back to the office will work after that but we'll see. Josh usually likes going to the office (he has to say hello to everyone and, sorry Barb, he likes to see what people are doing!) - there's a TV in the library so he can watch some train movies, and I've got Legos at the office, and he can do other stuff (there's always paper and pens!) while I read a transcript. I've always kept a sleeping bag at the office as well so if he gets sleepy, he can snooze. And, he likes to go up/down the stairs so we get in some PT while we're there. LOL! Thank goodness folks at the office understand the situation and are patient about him being there - and I don't bring him all that often.

Day 7 begins.

Day 6

2010-06-03T16:23:00.000-07:00

This has been an up/down day. Because he had the diarrhea yesterday, and today was only about an hour and a half of school, we decided Josh would not go to school today. I was already scheduled to work from home so it all worked out except for his moodiness and behaviors today.

Josh started out OK, getting himself out of bed and into the bathroom. I went in to make beds and heard him sit down really hard on the pot - he went into one of the PNES while sitting there so I stood near him until it was over. After that, he did fine, washed himself up, etc., and as he was getting dressed, the bus pulled up! I had called yesterday to say he wouldn't be going to school but, as it turned out, I'm glad they came. I had cards for the two drivers and aides, thanking them for all their patience and kindness this school year. We came downstairs and he had his NV, some browns with peanut butter, and then later he asked for oatmeal (! haven't had that in a long time!).

Getting him up to go to the doc was not so great - had a very short PNES but peed in his pants during it so had to change his clothes before going. Then, when we got to the doc, he wouldn't get out of the car. Fortunately, this was the psychologist so he came out and talked to us outside for a little bit. Then, when we got home, he wouldn't get out of the car! After about a half hour, he came out and just laid own on the couch, took a snooze for a couple of hours, and was totally different when he woke up - active, friendly, funny. Gramma and Boompah came by to watch him (he had his second NV while they were here) while I ran out to do some grocery shopping and then, when I got home, he ate a great dinner, talking up a storm. When he wanted some more milk after dinner I said fine, but please go pee first, and then he shut down again. He's been looking at the Lakeshore Learning catalog for the last half hour or so, won't come get his milk because he knows I'll divert him to the bathroom to pee first.

I have no idea what this pee thing is all about. He does not appear to have a UTI, but I guess that's possible. Is there something boys go through at this age that makes it weird to pee?? He does fine in the a.m. (most of the time), so what is the deal as the day goes on???

So that has been Day 6. Tomorrow Josh is coming to the office with me at least for awhile - we'll see how long it lasts. Don't know if we're into the "week of weirdness" that so many on NV have experienced. Sure hope he goes through it quickly!!??

Day 5 (con't)

2010-06-02T11:24:00.000-07:00

Well, had to go pick Josh up at school. I think the NV is clearing out the garbage that is in his system and, yuck, he spent about an hour and a half on the toilet! Plenty of clothes to clean up, wash the gym shoes. Eeeeiiuuuww! Makes you wonder what other kind of yucky stuff we have in our systems??

By the time I got to school, he was dressed in clean clothes, feeling much better. He's still pretty "loose," but he ate his breakfast that he didn't get the chance to eat at school, and he ate his lunch! I probably shouldn't have let him eat both but he was really hungry!

What a way to end the school year - today was the last day of school! A week and a half now before ESY and camp start!

Day 5

2010-06-02T03:48:00.000-07:00

Well, Francis even noticed some changes. When I got home yesterday, she said first that Josh really likes the NV - drank his evening dose quickly and said he liked it! She also noticed that, in getting off the bus, Josh seemed more confident and sure of himself. She also said, when they got inside, he sat down, looked right at her and said, clear as a bell, "I missed you." She said she didn't have to decipher any words, they were clear, and she was really touched!

Josh had a "great day" at school, too. He even got to watch a train movie as his reward in the a.m. for getting off the bus without any problem. Yeah!!

Day 5 is about to begin - rainy, and Josh usually has problems on rainy days (humidity, I guess, affects the hypotonia and sometimes makes his leg a little achy). We'll see how today goes!

Day 4

2010-06-01T03:56:00.000-07:00

Kind of a downer day yesterday - I'm wondering if all the activity from Sat. and Sun. might have wiped Josh out. He had a really lazy day, lots of just laying around after a busy a.m. (pushing the vacuum around, outside for a little bit), and some difficulty getting him to go pee in the bathroom. I figure things will balance out.

Did even more research on protein intake - at his age/weight he should probably have about 50 or 60-80 grams per day so I'm watching protein intake from other sources. Will check with his doc next Monday about this just to be sure.

This will be the first day at school on NV. I told his teacher in a note this a.m. that he started on it. We'll see what, if anything, they see at school. Only two more full days of school and then summer break!

Day 4 is about to start!

Day 3

2010-05-31T07:11:00.001-07:00

OMG! Even on the low, minimal dose, there have been things that have happened that, if Gramma and Boompah weren't here to see them, I'd have thought I was crazy. The first thing was Saturday night - after just that one day on the NV - something that, at the time, I thought was unusual but nothing more. Josh is not big on playing with toys - I have always had to take out toys and really work at drawing his attention into them, playing with him, and so on. Sat. night, we went up to his bedroom to play a bit before bed (I toss in therapy things, little does he know!) and took out a cool sticker thing to make constellations - idea was for him to learn/say the names of the constellations, then put the stickers to make them (speech and OT!). We started playing and all of a sudden, he stopped and said, "I take out trains." He turned away, took out a train set, got it all out of the box, and started trying to put the tracks together. Doesn't sound like much? Josh has NEVER taken out his train sets on his own, and rarely would play with them if I took them out (he likes the real thing!). We played for about an hour with the trains. And, while we were playing, he saw his "little yellow bear" under the bed. He tried crawling under the bed to get it (motor planning not previously seen!), but couldn't reach it. I handed him his Pirates of the Caribbean sword, he turned it on (I didn't even know he knew how to turn it on since he has NEVER played with it before!), got his bear out from under the bed using the sword to help (again, motor planning!), and then I picked up another little sword and we actually had a sword fight (imaginative play!)! It took him a little bit to fall asleep Sat. night but he slept like a rock!

Sunday a.m., he got himself up and into the bathroom. We've had a little regression lately with not staying dry as often during the night and Sat into Sun he did pee through. When he got himself up from bed, though, he got his clothes off, put them in the dirty clothes basket, and went back into the bathroom. He even took a shower without having one of the non-epileptic seizures first! Throughout the day, he took himself to the bathroom or went when I would ask if he needed to pee - no accidents all day. And, he stayed completely dry during the night last night - as Peter would have said, Josh "peed like a racehorse" this a.m., but he was dry leading up to it!

The other things that happened yesterday - 1) Josh is my recycling guy - he has two large baskets that he will shred newspapers, or put his toys in, or whatever, but he likes playing with his baskets. Normally, if they got too full, he would ask me for a garbage bag, I'd have to empty the baskets, and I'd wind up taking the garbage bags out to the garbage bin in the garage. Yesterday, Josh was playing and said they were "too full." He picked up one basket, went out to the garage, and dumped it right into the garbage bin. Then he came back in and got the other basket, taking it out and doing the same thing. (he needed help holding the top of the garbage bin open but oh well).

2) Last Fall when we moved into the house, Josh and I spent a lot of time out on the sun porch - it's lovely out there, looking out on the garden, watching the wildlife, etc. But, after Josh broke his leg last Fall, he wouldn't go out there - even in his wheelchair at the time, he would cry if we took him out. This season, even though the weather has been wonderful for it, he really has not gone out there except to perhaps get a ball that rolled out (we keep the slider door open so the cats can go back/forth). Yesterday, Boompah was sitting out there. Josh walked out, sat down, started to talk to Boompah some, and we wound up spending pretty much the whole day out there - no TV until much, much later in the evening. We even had dinner out there!

3) This has been a hard year for Josh for a lot of different reasons, and he's dealing with a lot of emotional issues (on top of whatever hormonal stuff is going on with tween years!). As a result of all of this, he's had on/off progress with staying dry at night, and has actually regressed a little with peeing during the day - we've resorted to Depends more often than I think should be done, but it's better than washing clothes all the time. Anyhow, yesterday, as I said, he took himself to the bathroom and went when I asked if he needed to (his answer to that question lately has been, "NO!" and then he'd lay down on the floor and usually pee - not fun for either of us). He stayed dry all day (no Depends at all until bedtime last night - and that was dry this a.m.), even through a little snooze (which, in and of itself was unusual - he could snooze for hours, this one was less than an hour!).

4) Josh is not what you would call a night owl. His usual pattern is to go to bed and be asleep no later than 7:30 p.m., and he'd be up, lately, around 6:00 a.m. or so. His other pattern has been to sprawl out on the couch and truly be a couch potato from about 5:30 until he went to bed at 7:30 (at that, he'd fall asleep on the couch or the floor and I'd wake him to get him up to bed - either that or we'd have a major battle about going to bed) - he get up to eat, but go right back to couch potato-land. All day yesterday, he had more energy and was up and about, outside on the sunporch, playing with his radio control train, talking with Gramma and Boompah, etc. Last night I thought for sure he'd crash on the couch but NO! He finished dinner (out on the sunporch) before us so he came in to watch the Union Pacific movie while we finished. He didn't lay down much and if he did, he'd be up sitting and watching within a few minutes. We kept looking in to see if he had fallen asleep yet, but no. We'd see him sitting up, then lay down for a minute or two, then get up and walk around, come out to the sunporch again, and so on, barely watching the movie. It got to be about 8:30 and he was still awake when the UP movie ended. He asked to watch a Blue's Clues so I put one on while we were still outside chatting. Only then, toward the end of Blue, did he fall asleep on the couch. Gramma and Boompah left a little after 9, and I got him up to go up to bed - he went in and peed, I did put the Depend on him just in case, and he was back to sleep within minutes. Maybe the staying up later was coincidence since they were here, and the late night I think is having its effect now since he was up at his normal 6:00 a.m. and he is snoozing now (it's 9:45 a.m. right now), but who knows?

I did up the dose this a.m. to the one scoop per 8 oz of milk - he's had one serving this a.m. I even did a shake with the NV this a.m. - I used milk, threw in a tbsp of yogurt, and 1/2 banana for my breakfast - it's actually pretty tasty!

So, Day 3 is on its way - and it's going to rain any second. Josh had said he wanted to take the lawn mower out to walk around and "turn it on" - doesn't look like that's going to happen with the rain on the way. He also, though, was pushing the vacuum around the living room - now to just turn it on!

Uh oh, heavy rain has started - gotta go check the windows!!!

day 2

2010-05-30T05:01:00.001-07:00

Thought I'd post a little bit about Josh - he's a great kid, great sense of humor (OK, he likes the slapstick stuff most but, hey, he's a guy), loves to help out when he's in the mood to help, and, like most tweens, being in the mood is becoming rarer, and he is a real train fanatic.

Over the years, Josh has been diagnosed with verbal and oral apraxia, dysarthria, global dyspraxia, sensory integration dysfunction, hypotonia, cognitive delays, and last Fall was diagnosed with epilepsy. The last few years, docs have added the phrase "static encephalopathy" to his charts - although no one has been able to tell me what that really means. He also, because of some things that happened to him at school (I'm pretty sure this is the reason) and because he had 5 ER visits this past year (!) for various reasons, is now having psychogenic non-epileptic seizures. When Josh was born (during an F4 tornado!!!) he had sepsis - body temp went extremely low and wasn't taking his formula, etc. He was rushed to the hospital and we spent the first 8 days or so in the hospital. He came out of that just fine with docs saying there would be no long term effect (hhmm...), but stopped breathing while taking a bottle when he was about 6 weeks old. Another rush to the hospital, CPR training for everyone, and a sleep study showed sleep apnea. For the next 8 or 9 months, he was on a sleep monitor and caffeine. Again, docs said there would be no long term effect (again, hhhmm....). His first year, he came with me to the office pretty much every day since no daycare center would take a kid on a sleep monitor. He loved coming there, and secretaries at the office were incredible - if I had to take a call from a client or something like that, they would come get him and play with him. I spent a lot of time on the floor with him during that time - I would read my transcripts with one hand, and play with him with the other. Somehow, I managed to make my work quota, and he did OK.

By the time he turned 1, he was off the monitor and we put him in daycare. Colds and ear infections started immediately. We spent so much time at the ER with ear infections, we joked that they should name a room for him! We spent tons of money on amoxycillin and rosefen, too. When he was 16 months, he had an ear infection that somehow got into his blood and he had a febrile seizure - complex one that took almost 20 minutes to control at the ER. After medicos got it under control, doc was talking to us and, as he was leaving the room, said it sounded like there was another problem. Chest X-ray showed pneumonia and Josh was life-flighted to Peoria to rule out anything more serious. The worst 2 hours of my life was us driving to Peoria, watching the sky as the helicopter flew above us with our son. Fortunately, the MRI and EEG done in Peoria ruled out any other seizure disorder (at that time), the pneumonia cleared quickly, and things were back to "normal." Ear tubes followed a couple of months later.

During all this time, though, Josh was not meeting his milestones, just as he had not done during the first year of his life. During the first year, doc said the delays could have been from his size - to counter any effects of the caffeine, Josh had gone on rice cereal at a very early stage and he ballooned! If I recall correctly, he was upwards of 40 pounds at his first birthday - and not walking or crawling. He was starting to make sounds - he had most of the consonants, could say "mama" and "dada" but he lost all sounds with the febrile seizure. At 12 months, we told the doc we thought something was really wrong and took him to Easter Seals for evals - showed sensory integration dysfunction. The neuro doc in Peoria at 16 months added hypotonia to the mix. And, his speech therapist at about 2 years old suggested the possibility of apraxia - that was later confirmed at Shriner's Hospital in Chicago.

So, after working with him with PT, OT, SLP, and music therapy, he finally was able to sit unassisted at about 18 months. He learned to first roll all over the place (spatial abilities were amazing), then learned to army crawl. Interesting - he would army crawl all over my office except he would stop and refuse to go into the "alley" - a newer set of offices in the back where the carpet was the same texture but a different color. Man, those sensory issues are soooo weird!

When he was 3 1/2, on Christmas Day, he walked unassisted for the first time. He had been walking with assistance for about 6 months prior to that. The director of Easter Seals at that time, who had been a great friend and mentor during all this, would have Josh push the vacuum around and "clean" - great practice for walking and great therapy for him. For some reason, over the years, he has become oversensitized to the vacuum sound - he now wants the vacuum out, but rarely do I turn it on when he's home.

During all this, I was on the net, searching out info on sensory integration dysfunction, hypotonia (we even took a trip to Colorado where members of the hypotonia online group had an impromptu meeting and were able to meet with a neuromuscular doc from Oakland - she took a look at Josh and said he was going to be "just fine" - one the upswing of the average intelligence scales, but just fine). Then I found Lisa Geng and the childrens apraxia group. They were talking a lot about fish oils to help with speech. With Josh using only a "ba" syllable for everything, and after talking to his doc about it ("these are essential fatty acids - there's a reason they are essential!"), Josh went on fish oils on July 27, 2002. Within three weeks he was saying words! They were hard to understand, but he was communicating and trying to say more and more. He hasn't stopped talking since. He's still hard to understand, his articulation is not great, but he understands (and always has) pretty much everything and has a pretty large vocabulary.

Josh is 12 now - turned 12 on May 19. He has been in Special Olympics (divisional golds in basketball skills, track and field, bowling, and soccer; silver in gymnastics, track and field; State gold in basketball skills, silver in track and field, bronze in soccer - not bad for the kid the "evil doc" years ago who diagnosed him after 10 minutes as having mental retardation and said would never walk unassisted!). He loves school, has friends in his class, is starting to read sight words, does well in math (for his level), watches train movies, the AirBud movies, just started watching the Chipmunk movies, still likes Blue's Clues, loves his Gramma Bev and Boompah. He's been through a divorce with me, and a move from Ottawa, IL, to Hanover Park, and now to Crystal Lake where we have a beautiful house with a garden that surprises us everyday. We have two cats (Casey Jones and Burlington - do we see a train theme here??) who love to be out on our sunroom where they can watch the birds and chase real chipmunks around the perimeter.

Josh has had all sorts of therapies over the years - the usual PT, OT, SLT, music therapy, but also rock climbing therapy, aquatherapy, Sensory Learning, The Listening Therapy, and now will have some more private speech (I hope insurance will cover that!!), and this summer will attend, for one week, a camp at Bravehearts for therapeutic riding (along with a couple of other fun camps). If he takes to the therapeutic riding, it would be nice for him to continue with that - the stories that come out of that type of therapy are amazing and inspirational. The epilepsy appears to be controlled with Keppra - which, I hope, will be reduced and/or eliminated with the Nutriiveda (as in other cases that we have been told about via www.pursuitofresearch.org and www.childrensapraxianet.com) - we'll see. Josh is also seeing a psychologist for the non-epileptic seizures which, I hope, will better with the Nutriiveda. I'm more hopeful about him just having more energy and perhaps a speech surge - I'd love to see his articulation improve.

So that's my Josh, my guy. Right now, he's upstairs, contemplating coming downstairs for the day. Gramma and Boompah are coming today and I've got to mow the lawn (another noise he's not totally crazy about!). Day 2 on the low dose of NV is to begin - if he continues to not have a reaction to it, I'll up the dose tomorrow to 1 full scoop a.m. and 1 full scoop p.m., working up to the 2 scoops a.m. and p.m.

May 28, 2010

2010-05-29T20:13:00.000-07:00

After researching the contents, speaking with the science advisory board, and taking a huge leap of faith, Josh started on Nutriiveda today. SAB says there is no MSG created by the process of isolating the whey protein and that was my major concern.

So, I'm starting him slowly - dose for his age/size should be, according to what I've read, 4 scoops per day. I'm starting him on one until I'm sure there will be no reaction. Of course, about an hour and a half into our ride to Rochelle today, he started doing the coughing thing that he does when he gets MSG and I started thinking, well, that's that. But, we were also passing a huge grain "elevator" plant so perhaps it was just regular allergies hitting him. He did not have the same reaction tonight when he had the second half of the dose. So, we'll see.

I am so hopeful that NV will have some effect on him. He has so much energy first thing in the a.m. until about 10:30, and then he just starts fading to the point that, when it is bedtime, he's spread out on the couch and won't move. I'm hoping those B vitamins in NV will help with energy. I know, I know - when he first went on fish oils, I kept saying I hoped they would have an effect on his speech and, gosh, don't you know you have to be careful what you hope for! LOL! He hasn't stopped talking since three weeks after starting fish oils and that was, what, 8 years ago.

Anyhow, I know the possibility that the minimal dosage I'm doing with him to start is not going to have much of an effect but we'll see what happens after this few day trial period.

Wish us luck!