Ping pong

    Josh described our nights like a ping pong game. He said the girls play ping pong with me, taking turns calling me to their side. Sometimes its just once, but some nights I go back and forth several times. No wonder why I always feel tired. Amaya has been having rough nights again and spending more time in our bed than in hers. Last night was especially rough. She didn't fall asleep until ten thirty and was up at midnight in tears and needing pain meds. Amaya is still having a tough time locking the bar at night and taking about ten to twenty minutes to lock it in. After that she's been in a lot of pain and having a hard time getting comfortable.
    Yesterday Amaya had a really stiff knee at school and at therapy. She's been complaining that her top pins hurt when she puts pressure on them by sitting down or laying on them. And she said that when she steps and puts her weight on her left leg her knee hurts. At therapy yesterday she told Melissa and showed her where everything was hurting. Melissa thinks it all comes from how Amaya's been walking and sitting; when she turns her leg and knee inward. Melissa said that the hip controls the rotation of the hip, but when Amaya turns her leg inward she's putting too much pressure on her knee and that's what's causing her pain. The bad thing about a stiff knee is that her knee isn't getting the proper amount of fluid in it and it can cause problems for her down the road. We obviously don't want that so we really need to stay on her to keep her leg straight and to do the exercises Melissa gave her to help undo any damage done.

Lidie tried riding the bike that Amaya usually rides. She did pretty good.

Melissa re-taped Amaya's knee as Amaya showed her where her leg has been bothering her.

Here's one of the new stretches Melissa taught Amaya. But as you can see Amaya still had a hard time keeping her legs straight. 

Then Melissa had Amaya lift her leg up as she laid on her side. Amaya said this was a bit tough. Melissa said that was normal because those muscles aren't very strong since she's been relying on other muscles to do the work. 

Here's the last exercise she learned. This one was also tough for Amaya. 

Melissa had Amaya practice walking around the long loop today. Amaya was thinking that she was keeping her leg and feet straight, so I videotaped her so she could see just much she turns them in. She's not even aware of it. 

    Amaya also rode the bike then worked on bends and lunges at therapy. When it was time for bends Amaya had a pretty easy time. Her knee was at fifty-four degrees to start which was great considering how stiff her knee was. She was able to get to ninety degrees in just over a minute. 

    Melissa let me know that someone form Beaver (Amaya's primary clinic) called trying to get Amaya's authorization processed. As of now she's only scheduled until Monday for therapy. Ive been trying to get a new prescription and referral processed for the past two weeks. On Tuesday I was told they were just now processing the prescription. I was so frustrated. It is always such a battle to get them done in a timely manner. And they always seem to be done at the last minute then its difficult to get Amaya scheduled with Melissa and at times that work for us. Ugh. Once again Marilou at Beaver has done an excellent job of helping us get the referrals where they need to be, processed and done just in time for Amaya to get new appointments. 

     Today is a big day. We have our appointment with Dr. Nelson. We're hoping that he'll let us us when Amaya 's fixator will come off. It could be within a month or we might have to wait another month for her new bone to harden. We've almost reached four months since Amaya stopped lengthening (Oct. 4 will be four months). Dr. Nelson had said that it usually takes six months for the new bone to harden, but that it might be as early as four months since Amaya was doing so well. So we'll find out today. Wish us luck. Amaya is very nervous and anxious about it. She's not sure about what to expect, but were hoping that talking with Dr. Nelson will help calm her nerves.