It has been over a year since Lennon went to school and on Monday we had an IEP meeting and today is the second day of school. Its been a challenging year with many a times me wanting to wrap him in a bubble. Lennon is doing incredibly well and while he still gets fatigued he is extremely excited about going to school. I think he was getting bored at home as I am not much of entertainment, though he sure could keep me occupied but then I would not get anything else done. Until the winterbreak lennon will be gone for about 4 hours (8-12) and perhaps after the first of the year it may get extended, we’ll have to see. I think a lot of it depends on his energy levels and fatigue issues he’s still dealing with. It is amazing how much he actually WANTS to learn. During the month of homebound instruction I’ve seen a different kid. I have see a child who struggles but I also see a child that doesn’t allow himself to be down and uses what he learns. He currently is trying to learn the alphabet and learning to read. We have magnetic letters on our fridge and he will sound some of them out…A is Apple but he still gets mixed up a little. Some days he gets everything right while other days its like he lost everything he had learned.
He loves to read or be read to, current favorite is still the very hungry caterpillar and this book he can recite from memory. The other book he likes is the Gingerbread man but will tell you he doesn’t know how to read it. Counting he does good up to 3 sometimes 5 ..again that changes from day to day and I am not sure why it changes. It leaves me wondering about his chemical balance and the brain damange that was caused by the ammonia on his brain. It is interesting however the things he can do now that he couldn’t before. He’s also working on toileting which still seems to be a struggle. He will use the toilet in the mornings, but the rest of the day is a challenge as I think that sometimes he can’t feel when he has messed his diaper or that he is lackign the feeling that lets him know ..hey I need to go to the bathroom. We have tried the reward system and that was a bust, so now I need to figure other things out.
His feeding tube seems to be going ok even though he’s still sore at the site. In time that should hopefully go away and it will not be that much of an issue. The frustrating thing sometimes is that I see him eat .. pickles, chips, oranges, sometimes rice, cheese, sometimes peanutbutter and jelly and sometimes hot oatmeal or cereal. So we know he can eat but there is still that block that allows him to eat more nutritionally and maintain his weight. I think if we were to stop with the feeds his weight would drop at the same time we encourage him to eat (and waiste most of it). That is tough since we too feel the economy on our budget something terrible. I try to maintain positive without getting to frustrated and am at a loss in how to move him forward to start eating substantially. The issue is that he doesn’t qualify for feeding program as it is not a physical issue but more of a psychological issue and it seems that x-amount of months down the road I will need to seek out a therapist that specializes in eating disorders to see if at some point Lennon get be free of the feeding tube all together.
Irregardless, he is doing very well, he’s excited about going to school and has maintained healhty.