This is the post I was going to write last night, but didn't because I fell asleep as I was rubbing Amaya's toes at bedtime. Thursday night Amaya slept better than the past couple of days. When she woke up she said she had a dream that she was playing basketball with her fixator on. Then she said, "I wanna play baseball with my fixator on." It's nice to see her planning her life, with her fixator, and not letting it limit her.
On the way to physical therapy we had to swing by Target to replace Amaya's new shoes. The stitching came apart on them. We were able to get an exact match, which made Amaya happy. At therapy Kim gave Amaya another massage to help loosen her tight muscles on her knee and thigh. Her muscles are so tight that you can see them bulging thru her skin, like a professional body builder. Melissa said to make sure that we're keeping up our work at home (massaging and stretching the knee). Amaya didn't ride the bike today, instead she worked on walking. She walked down the hall, turned a corner and went up toward the hill (about the length of ten rooms). This is the most that Amaya has walked at therapy. Today her steps became more smooth and soft. Kim asked her if she wanted to go up the hill, but Amaya said "no, maybe just halfway." When she was halfway up, she said that it was easier than she thought and ended up going the whole way up. On the way back to the gym she rode the scooter that Lidie has been riding everyday. Unfortunately I don't have any pictures, because Lidie threw a major fit, she didn't want to share the scooter with Amaya. Lidie and I spent the last few minutes of the session in the hall. I watched Amaya thru the window do her exercises and had Lidie take a break in the hall. We could see Amaya crying thru her knee bends. It was sad to see her in so much pain. She was only able to get her knee to 98 degrees today. Which isn't terrible, but definitely a drop since yesterday and last week. Melissa said that its still okay, and no reason to slow down our turns yet, but to keep doing the knee bends and massages. Melissa said that as long as we're getting 90 degrees every day we should be okay. She said it's important to keep the knee moving and the fluid moving in it well. Melissa reminded that its going to get tougher from here on out. Amaya has done so well up to this point, but we have to keep it up. Unfortunately, it won't get any easier for her; the muscles and nerves will only get tighter and cause her more pain.
After therapy we went to Amaya's school to drop off her homework. We got there during snack time and Lidie and Amaya got to enjoy snack with her friends. Her friends were so excited to see her. Unfortunately, her pain was so bad that we only stayed for a few minutes. Ms.Griessbach gave Amaya a new homework packet and some work to do at home and a book to read. When we went to the office to turn in the note from the doctor's office to excuse Amaya from school Amaya was almost in tears from the pain. On the way home she napped (she's been napping a lot lately). We stopped by a family friends house to pick up some food for dinner (yay! Another night that we didn't have to make dinner!). When we got home the girls decided to rest and watch movies on my bed again. The good things is that I was able to nap while they watched a movie. The bad thing was that they got crumbs on my bed and floor. I massaged Amaya's knee and did some bends, then she decided to lay on her tummy. She said it was pretty comfy.
When we changed the gauze tonight she actually looked at all the pin sites. She said they had stuff on them that she didn't like. I told her it was gunk, its actually her skin coming off. The pin sites actually look really good. Before bed I massaged her knee again and did more bends of the knee. It's not fun for her, but I know its necessary. It's just a sad and hard reality that things will get harder. It feels like we need to be more vigilant with the bends. Amaya fell asleep pretty quickly, by seven thirty, but woke up in twenty minutes. She cried and complained of numbness and pain in her foot. Dad took her potty several times (sometimes she wants to get up to step on her foot because she says it feels good and helps her fall asleep). Then she layed in bed while I massaged her foot, then eventually she fell asleep and so did I. I woke up at ten thirty, did her last turn for the day then fell asleep again.
Amaya practicing walking with Kim.
Amaya decided to try laying on her tummy to watch a movie on my bed.
This was her fixator last Friday after the rod was fixed. The silver rod (the part with the white piece of paper and two black arrows) was adjusted. See how small it looks? Now compare it to the pictures below.
This is it now, a week later. You can see how much we've turned in a week's time.
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