Amaya's Journey with PFFD: Rough nights and tight muscles

   Last night was an early, but rough night. The last two nights have both been rough, on Amaya and us. Last night Lidie was so tired from the night before that she fell sleep at six. Amaya fell asleep at seven thirty as I massaged her leg and screwed the bar into place. Unfortunately, that didn't last long and she was up by eight complaining of a numb foot, pain and needing to go potty. Although I know her pain and discomfort were (are) very real, she began to get herself all worked up mentally and emotionally and wouldn't let Josh or me help her in any way. Which is very frustrating. Eventually she let me rub her knee then she fell asleep. Josh and I were both exhausted and went to bed when she did. She woke up again at ten pm with more pain and needing to go potty again. She got all worked up again and kept whining and wanting silly demands (like sleeping on her left side, with her fixator on and wanting to take the bar out, etc). Josh and I were so tired and had very little patience. I got the biggest headache from her screaming and crying. Again she refused to let us help her or touch her. This is one of the hardest things; seeing her so upset and not being able to do anything to help her. A big part of the pain is physical, but another part is mental. If we can keep her calm then she can move past the pain and fall asleep. Once she's asleep she sleeps pretty well (just minimal grunts and groans). Josh and I gave her some space, let her lay in our bed where eventually she calmed herself down and feel asleep. She slept until five thirty this morning and was fussy with dad. She only wanted me to help her and him to leave her alone. Which is usually okay, except that she woke up Lidie, who then wanted me as well. Josh convinced her that it was late enough that she could just get up for the day. He took her upstairs and let me and Lidie sleep in a little bit longer. Lidie wanted to get out of bed at six. Thankfully Josh took her upstairs as well and I got to sleep in until six forty five. When I came upstairs Amaya was still crying and fussing. We made her take a time out and pull it together. We try to give her a little extra lead way since she has so much she's dealing with, but then at times have to discipline her just as if she didn't have a fixator on. It's a tough balance, but we're figuring it out each day. She pulled it together pretty quickly after that and then was back to her sweet self.
   When I got her ready for physical therapy she put on her new shoes. She loved them! "I can light my left shoe myself!" She's so impressed with the light up shoes. She said that it felt good to have tennis shoes on, that they felt much better than the slip-on's she's been wearing. Her shoes put a smile on her face. On the ride down she complained of knee pain. She kept asking to have her knee straight, but I explained that during the day she needs to have the knee bent and at night it needs to be straight. This way she's always working on something. Lately she's been complaining of a lot of knee pain and wants it straightened throughout the day. Once we got to her appointment I told them about her knee pain, and the numbness she felt on top of her foot at night. Kim massaged her knee and foot then stretched her foot out. Kim said that I should press harder when I massage her knee and to make sure we're bending the knee more during the day. I told them that yesterday I skipped locking the bar in during the day and worked on knee bends instead. Melissa said that was a good idea and that I should keep doing that. After her massage she rode the bike again. She did the hill twice today and was able to pedal a lot smoother and with some speed. She did great! A couple times she stood to pedal. When she was done her muscles shook from such an intense workout. Today as she walked she had a bit of a stomp to her. Very Frankenstineish. Melissa told her to try to walk gracefully, smooth, like a ballerina. But, it was pretty tough. While she's there she walks holding Kim's hands, but at home she walks with the walker for support. She seems to have an easier time walking smoother with the walker, but she also needs to be able to walk without it. Since her knee was so tight today getting it bent was difficult. At first she only got to 93 (this was when she was pushing her leg with her right leg). "I need some help." She told them, so they pushed her leg for her. When they do it, they can get higher numbers, but it hurts Amaya more. The tears started, and she got 98 which I thought was great. But then she did another bend and with both Melissa and Kim's help she was able to get her knee to 104 degrees. Isn't that wonderful?! At that point she was in tears. Lidie stopped playing and asked, "Is Amaya crying?" I told her yes, that bending her knee hurts her. Knee bends are tough and painful, but she does them. Every day. No complaints, no settling for low numbers. Melissa said that its great that even though Amaya's muscles are tight the stretch is still there, she hasn't lost much range of motion. She showed me how to massage Amaya's knee at home and told me to add more exercises at home. Before we left they gave Amaya a bag of ice to put on her knee. They said the cold would help the pain go away.
   When we got home the girls wanted to watch movies on my bed. I carried Amaya down the stairs all by myself, for the first time. It wasn't as bad as I thought it would be, but I don't think I could have done the upstairs part ( I saved that for dad). As I massaged her legs on the bed I noticed that Amaya's legs were just about even. I teared up. I couldn't believe it. I told her to look and see and she made the most precious smile. She looked at her legs then said, "yeah, I guess they are." She hadn't really noticed until now. After the massage I bent her knee for about twenty minutes. It was very tight. I massaged it again then took a quick shower. When I came back I stretched her knee again. After the movie she decided to try to climb in and out of bed all by herself. I was a bit nervous, but just watched. And she did it! Then she asked if she could wrestle Lidie. I said no. Then she asked about tumbling, again I said no. Ay yay yay! I have a feeling she's going to start trying all kinds of new things now that she can bear weight.
   When Josh came home he had a card for Amaya from the mail. Her face lit up. She loves mail! (hint, hint). It was from Terra and her BFFFFFF Tristin. They wanted to congratulate her on riding a bike and walking. She was touched by their sweetness and thoughtfulness, so were Josh and I. Tonight she fell asleep at seven thirty and woke up at eight in pain, with a numb foot and needing to go potty. She started to get worked up and ready to spiral down hill. But at eight thirty when she had to go potty again dad had a talk with her, letting her know that she needed to remain calm, not yell, and let us help her. He reminded her that when she's asleep she doesn't feel much pain and can rest. It worked. She fell asleep with a hot pad on her hip, a cold pack on her knee and me massaging her head. Its almost two hours later, and even though she's moaned a couple times, she's doing much better than the last two nights. Hopefully she'll sleep good tonight.

Amaya's teacher gave her this as home work. It's a good indication of how she's feeling at different times of the day. As you can see physical therapy "ouchy" and night time "Oooooooch" are the hardest.

Amaya walking.

Amaya riding the bike.