Saturday, July 25, 2009

She's Taken Over the Living Room!

We've now entered what we hope to be our last round of serial casting with our youngest daughter, Nappy. Born with a muscle/joint disorder called arthrogryposis, Nappy came to us with legs that were locked at 90-100 degree angles. They are now locked at about 40-degree angles and we're hoping after this round that they will have nearly normal flexibility. Previously, we've casted one leg at a time, however, time is marching on and she's getting older. We decided to do both legs at once. This means 5-7 weeks of her wearing two full-leg casts. Very limited mobility to say the least.

I decided right off the bat that our house would have to go. However, somehow that didn't happen. I decided that, too, when Swim Girl was in a body cast after hip surgery. Even when glorified by additions and basement finishing, a cape cod is anything but friendly to the mobility impaired. Somehow the economy has not agreed with me, so here we are, once again, with a child in too much cast, and a house with 4 staircases. In light of that, we moved Nappy's bed down to the living room, as well as her clothing, her special drawer full of treasures, and to cap it all off, her toothbrush and tooth-brushing cup.

How has she dealt with this all?

"You got me a new bedroom!"

"No, Nappy. This is just the living room with your bed against the wall. It's only your bedroom at night."

"Right. Okay, everyone out of the living room because it's my bedroom and I need time to myself."

Sigh. That went on the first day. Then there was the desk controversy. She decided that our piano bench was actually perfect to be her "desk" when sitting on her bed.

"You can do that when no one needs it for the piano." I told her. That was a mistake.

The following afternoon Green Bottle Boy wanted to play the piano. First he stood as he played, which, of course, didn't work. Let me take a moment here to interject that as a parent who has 5 kids studying piano, I was so glad that he finally realized that it doesn't work to play the piano standing up. For years I've had to specify to my children that you have to sit in order to play the piano. They have never believed me. So, this was a great victory for me, but then Nappy interrupted it all.

"You don't need the bench," She told GBB, "Just stand. This is my desk."

"Nappy," I said, "He needs the bench."

"Mom! He's just playing the piano. He doesn't NEEEEEED the bench. He just wants the bench. I need it to be my desk."

She lost and I won. However, then she was on to her next thing. Entertainment. Her current schedule is "Cinderella" in the morning, and then "Elmo" in the afternoon. I told her we would relax our television rules while she was in her casts, and some friends nicely lent us a little DVD player she can watch from her bed. That takes several hours out of the day. She's also been playing with her toys, sometimes on the floor, sometimes on her bed and sometimes at the kitchen table. Apparently, though it's getting old.

"Mom," she told me yesterday, "I just don't have a lot of toys that I love."

"You have plenty of toys." I responded.

"Not that I love...." she looked pained. "I think there's a solution. I saw a store when we were in the car. It said "Toys R Us". It's a store that sells toys. If you take me there then I will find lots of toys that I can love."

There are advantages and disadvantages to a child teaching themselves how to read when they are 5 years old! Lawyer/Social Advocate Boy did this, too, when he was 3. It was when he was 5 that we were driving through Gary, Indiana and he innocently asked us, "What's a showgirl?" Their world just gets much bigger once they can read.

So I explained to her that just because she read it, we weren't going there. The last thing I need is more toys in this house!

All in all, she's handling it well. I'm tired, and I'm not looking forward to all the appointments. I am, however looking forward to her walking!


MoonDog said...

I found your blog via a search for arthrogryposis. We are in the midst of adopting TWO children from EE with arthrogryposis. I hope you dont mind I added your blog to my follow list. I know we have a long road ahead when these two get home. We are leaving next week to see them for the first time!!

Deb said...

Please do! I'm very very excited to hear that you're adopting two children with arthrogryposis. How far along are you in the process? Are they older or younger?

It's always a great day when I hear about more kids getting a family!