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!
Wednesday, June 30, 2010
Monday, June 28, 2010
Day 30
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!
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
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!
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!
Saturday, June 26, 2010
Day 28
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!!
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!!
Tuesday, June 22, 2010
Day 24 (con't)
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!
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
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!
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!
Monday, June 21, 2010
Day 23 and 24
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!
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!
Sunday, June 20, 2010
Day 22 and 23
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!!
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!!
Friday, June 18, 2010
Day 21
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!
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!
Thursday, June 17, 2010
Day 20
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!
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!
Wednesday, June 16, 2010
Day 19
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.
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.
Tuesday, June 15, 2010
Day 18
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.
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.
Monday, June 14, 2010
Day 17
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!
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!
Sunday, June 13, 2010
Day 15 and 16
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!
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!
Saturday, June 12, 2010
Day 14 and 15
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.
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.
Thursday, June 10, 2010
Day 13 (con't)
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.
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
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.
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.
Wednesday, June 9, 2010
Day 12 (con't)
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
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.
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.
Monday, June 7, 2010
Day 10
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.
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.
Sunday, June 6, 2010
Day 9
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!
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!
Saturday, June 5, 2010
Day 8
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!
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!
Friday, June 4, 2010
Day 7
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.
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.
Thursday, June 3, 2010
Day 6
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!!??
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!!??
Wednesday, June 2, 2010
Day 5 (con't)
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!
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
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!
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!
Tuesday, June 1, 2010
Day 4
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!
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!
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