September 2, 2006
September 2, 2006 | Updates
Lots to report this week. First of all, school went great. Samuel announced himself by coming in the door on Monday and throwing up! I don’t know what caused it. It is really windy in the mornings at his school and I don’t know if the wind bothered him and caused him to gag and throw up. It could also be that when he initially gets in his wheelchair, he starts moving around a lot and contracting his stomach muscles to try and sit upright and this could have possibly upset his stomach. But despite feeding him a little earlier the next morning, he did the exact same thing only this time, he threw up in the hallway. So Wednesday, I fed him less in the morning, put a blanket over his face on the way into school and carried him into class instead of putting him in he wheelchair and he kept his breakfast down. So who knows? We’ll just have to keep experimenting.The rest of the first day was really good. Samuel laid on the floor during singing time and just smiled away. He sat on my lap for coloring time and even held a marker and colored by himself with me just holding his elbow in place. He was also pinching yarn and other things with his thumb and index finger and helping me glue them onto a picture of himself. He helped me build a Mr. Potato Head and he paid better attention than all the other kids during story time at the library. He got to relax on the floor while the other kids had snack time. But, by far, singing time is his absolute favorite. He nearly starts laughing as he watches the teacher sing with him and the other kids :)!
Tuesday didn’t go quite as well because he didn’t sleep well Monday night. We had to go shopping for school supplies Monday evening and we were out way too late with Samuel along for the ride. So he slept through about 45 minutes of school on Tuesday. But Wednesday was good again and he seemed to enjoy everything once more.
Overall, he doesn’t seem to be overstimulated by the noise or the activities. He is mostly happy when he is there. And the teachers have been extremely impressed with his awareness and attention span. They are also very good to move him from his chair to the floor and to other positions during the 2 hours so he doesn’t get upset being in his wheelchair the entire time. The other kids have been very accepting of him and don’t seem to mind that he is so different. And his teacher is great and very, very organized and in charge of that class. She actually contacted the school district after Tuesday’s class and told them she would need another aid for Samuel’s class because she basically needs someone with Samuel the whole time - even if just to keep track of his cute, but floppy head. They listened to the teacher and got more help. (Seems like I tried to tell them they would need the help a month ago, but I guess some things they will have to figure out on their own.)
Samuel also enjoyed horseback riding once again this week. He loves it so much and fights so hard to stay awake, but usually looses that battle. This week, he rode for about 30 minutes with me on the horse before he finally fell asleep. I wish we could go riding every week because he loves it so much.
I was thinking today that I hadn’t posted that Samuel is finally totally off his tranxene and has been for nearly a month. I haven’t even used it once in that month to calm him down. He has been totally fine without it. So we are now down to using suppositories (which I don’t think will end soon), a small dose of keppra each morning and night and the baclofen in his pump. We will continue to reduce the baclofen slowly until we think there are negative effects. But, I am leery to try and reduce his keppra especially because his myoclonus has been worse since hyperbarics. They are small episodes - mostly right after he wakes up from sleeping. But he hates them and they scare him. And the more upset he gets about the episode, the worse the episode is and the longer it lasts. So, hopefully, we will see them subside and then we can consider loosing the keppra. But that’s a pretty short list of medications considering what we came home with a year ago. Something interesting also happened this week. I’ve been noticing that when I go to replace Samuel’s feeding tube, he will flinch and pull a face when he sees me coming. A few days ago, when I went to do it, he just saw the tube and starting crying. I thought it might be a coincidence, so I put the tube away. Five minutes later, I just pulled the tube out of the drawer and he started crying again. He did that 4 times, so I am certain he knows what it is. Strange that after a year, he has suddenly figured out what it is and associated it with the discomfort it causes.Feeling bad for Samuel, I decided I wanted to know what it feels like to have a feeding tube put in your nose. I’ll tell you what! It stinks! It took me about 6 tries just to get it through my nose. I didn’t even attempt to put it down my throat and past the gag reflex because I knew I didn’t have the will power to do it. It BURNS going in! It’s like that feeling you get if you stick a q-tip too far up your nose – only a thousand times worse. And once it’s in, if you move it at all, you get that same awful sensation. That’s good to know. I’ll be much more careful not to move it or bump it in the future unless it’s absolutely necessary. Wow! I think everyone who deals with those tubes should know how it feels to have one put it. It was quite the surprise to me how painful it is.
One last observation. Samuel is more and more ticklish all the time and his laugh is becoming more and more normal. He is now ticklish all over his body and it doesn’t take much to tickle him. And he laughs out load and more often than he has before. They are both good signs that his brain is continuing to grow new connections and heal itself.
Well, that’s all for this week. Sorry so long! Keep praying!
Love,
The Jewkes
P.S. I posted some new pics.
RSS feed for comments on this post.
TrackBack URI
