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!
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