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.

Follow-Up on Injection

Today I took all three kids up to the hospital where Egypt had her injection 3 weeks ago. Doctor likes to check on progress, range of motion and to see if other joints have become affected. He says she's moving well. She's very active, so he didn't recommend physical therapy. I told him that she has recently had two different viruses and asked if I should be concerned. I thought maybe this meant her immune system was weak and she would be susceptible to more infections. He said no, that she just was one of those kids who picks up everything.

I also asked about her knee still looking swollen. I thought the initial swelling took longer than a week. He said the inflammation from the arthritis has caused her bones to grow quicker. She has a bigger bone mass on her right knee than her left knee. This also means that the bone is lengthening faster and her right leg is a bit longer. He showed me by laying her on her tummy and extending both legs out. Sure enough, I could see the length difference. You could also see it when he bent her knees up and the right knee extended farther than the left. Hopefully when (if) the arthritis goes away, it will correct itself.

Just glad that things are pretty normal (I'm not even sure what that looks like anymore. Normal for us is doctor appointments every week).

Distracting myself

I'm trying to distract myself from reality by sewing. Sounds dumb. But I've been wanting to sew and sell on etsy for quite a while. I've made several very nice pieces, but the weather's been so lousy I can't get outside to take pictures in natural light.

She looks so innocent. Her bouncy blonde curls. We already have an eye appointment tomorrow to check for eye disease. I was googling "JRA" and found out that the eye disease can be glaucoma, cateracts and infections. She has a 20% chance of developing inflammatory eye disease. There is a 40% chance of having serious long-term disabilities. There's a 20% chance it will go on to affect other joints. Now, every time she complains about something hurting, I'm moving that body part to see if it's swollen. She complained of her toe hurting just before bed, and I took off her pajamas to inspect it more closely. She complained of her elbow hurting at dinner; she couldn't climb into her high chair. I immediately checked the elbow movement. I'm going to become this totally paranoid mother.

So far, I can find nothing good about this. How will a blind child communicate with a deaf dad?