Wednesday, February 18, 2009

Updates and New News

Well, Holland is exempt from the State Assessments. I'm so glad he doesn't have to be put through that torture. He was in tears when I was trying to prep him for it. The Charter School didn't check his IEP, which stated the exemption and there will be other ways for him to be tested and the results reported. The good news is, I've ordered the Co:Writer software. I had enough money left in this year's allotment and decided it was the best way for me to test it without actually spending my own money. Only bad part is I have to give it back at the end of this school year. Anything that's consumable (workbooks, art supplies, calendars, or anything that can be written in) we get to keep. Everything else has to be returned that can be reused. I'm sad we have to give back our bird feeder, but it was $25 bucks I didn't want to spend! I'm hoping that we can somehow get this software written into his IEP for OT and speech purposes and maybe somehow get the school district to pay for it. I can't wait to see how it works and hopefully the success it will bring to Holland's writing.

The new news is that I took Egypt in for a re-check on her knee. She's been complaining quite a bit. I haven't noticed that it was locking up, but thought we should go in. It has been 8 months since her first injection and we really should have gone in before now. The doctor said there are so many subtleties to this disease that he really should see her every 4 months. He checked all her fingers, the way her arms moved, both legs and her jaw. I didn't realize that the jaw could be affected. There's going to be a parent chat on the effects of arthritis on the jaw in a couple weeks through this parent support group. There is this amazing bunch of parents who created this support group here in Portland. Everything they do is free. We attended our first activity last year - a family picnic that was lots of fun. They have these informative meetings every couple of months and they provide activities for the kids in another room while the adults listen to the speaker. They are also having their first annual family camp next year. It's fully funded - we pay nothing! It's a three day camp that includes accommodations, food and fun. I'm so excited!

So back to Egypt. Basically I waited too long for the recheck. When we first saw the doctor, he measured how flat her leg could be pressed down. He wrote in his chart a -5. The first injection got the leg to go all the way flat. But yesterday, he measured and it was at a -2. Not good, but not bad. She doesn't have much, if any fluid on her knee. But there is bony growth that makes her knee look swollen and the arthritis is causing her right leg to grow faster. He showed me and I could totally see how her right leg was longer. We are supposed to come back in 3 months, or sooner if I notice any changes. He said I may not notice a big limp, but I need to watch for the little changes. She may not even complain about pain and it could still stiffen up.

No comments: