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!!
Friday, July 30, 2010
Wednesday, July 28, 2010
Days 56 (con't) into Day 59
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!
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!
Sunday, July 25, 2010
Day 55 and 56
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.
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.
Saturday, July 24, 2010
Days 53, 54 and into 55
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!
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!
Wednesday, July 21, 2010
Days 47 through 52
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!
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!
Thursday, July 15, 2010
Day 45 and 46
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!
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!
Wednesday, July 14, 2010
Day 44 and 45
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!
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!
Tuesday, July 13, 2010
Day 43 and 44
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!
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!
Monday, July 12, 2010
Day 41,42, 43
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!!
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!!
Saturday, July 10, 2010
Day 40 (con't) and Day 41
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!
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!
Friday, July 9, 2010
Day 39 and 40
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!
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!
Thursday, July 8, 2010
Day 38 and 39
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.
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.
Tuesday, July 6, 2010
Day 37
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.
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.
Monday, July 5, 2010
Day 36
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!
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!
Sunday, July 4, 2010
Days 34 and 35
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!
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!
Friday, July 2, 2010
Day 33 (con't)
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.
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
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!
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!
Thursday, July 1, 2010
Day 33
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!
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!
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