I didn't get to post last night, because I fell asleep when I put Amaya to bed. I was up several times with her (she moaned and cried in pain again) then woke up at one with a screaming Lidie. She had a nightmare. After about thirty minutes of crying and screaming she calmed down, ate a snack, had some water then went back to sleep. When the girls tried to wake me up at seven today I was tired, but not as much as I thought I would be. Mostly I'm excited for today. Today we get to meet Rory and her family. They flew in from Virginia. Rory is almost two and has PFFD as well. We've corresponded with them for over a year now so we feel like we know them and are excited to finally meet.
Yesterday morning Amaya forgot to unlock her bar when she work up. I reminded her to take it out, which she did, but then put back in (when I wasn't looking). I didn't notice until it was time to leave for therapy, a couple hours later, that it was in again. I asked Amaya why she was still wearing it, and she said that when she took it out her knee was stiff, sore and hurt so she put it back in. I can't say that I blame her, but it did frustrate me. I knew that, that would only make therapy harder today, so I explained to her that we need to do things to help her at therapy not make it harder for her. Transition times are always hard on her. Going from bent to straight or vise versa is always difficult. Sometimes more than others, and the longer its been in one position (either straight or bent), the longer and tougher the transition can be. I had her wear the ankle weight on the drive over and told her that she would have to be extra cooperative today and work even harder, because those extra two hours wearing the bar aren't going to help her bend and reach ninety.
On the ride down she asked me for a straw and a baby wipe. It was a strange request, so I asked why she needed that. She said that there was a gummy snack stuck in her fixator. Ay yay yay. I didn't know whether to laugh or be upset. I gave her the straw and baby wipe and since she cleaned up easily I decided to just laugh about it. At therapy she decided to walk in with her walker. At night her foot has been hurting her and I reminded her that walking helps stretch the muscles on the bottom of her foot and the back of her leg. I was proud of her for deciding to walk on her own.
Melissa was happy to see her walking in. I mentioned the pain she has in her foot at night and asked if the walking would help with that (I knew the answer but wanted Amaya to hear it form the expert). Melissa said yes, and said that when she walks with a "crazy ankle" (when she turns her foot inward) that, that can cause pain as well. We need to get Amaya walking with a better gait and more often to help eliminate the foot pain. When she started working Melissa could immediately tell that her knee was stiff today. I told her about the extra time Amaya spent with the bar locked in. Melissa said that explained the stiffness and reminded Amaya to take it off as soon as she wakes up.
After her work Amaya's knee measured at 59, which was higher than Melissa or I thought it would be. Melissa was honest with her and told her "its going to hurt more today." But asked her to do her best and work hard. She reminded her to keep her head up then suggested doing ten bends then moving her foot back, until she reached ninety. By the fifteenth bend Amaya was in tears, but had gained almost ten degrees. She continued to work hard through the pain. After a few minutes she reached ninety. It wasn't easy, but she did it. Melissa asked that we do some stretches and work over the weekend to help the stiffness go away and help her with her bends next week.
When we got to therapy Melissa noticed that Amaya drew on her tape. Amaya thought she wasn't allowed to do its, so she denied it at first. But Melissa said she could. She said she could change it each week. Its kind of like a temporary tattoo. Amaya said its just "some lines, a happy face, with angry eyes."
I like this picture of Lidie playing while Amaya works in the background.
After Amaya sat down to stretch her leg Melissa had her throw balls while she bent her knee back. As she was trying to bend it Melissa said, "it's not bending. Let's get it bending." So we decided to try riding the bike.
Amaya asked if she had to do the big loop today, or could do the small one, but Melissa said that today she had to do the big loop because her knee was so stiff.
When we got back into the gym Melissa had Amaya push herself on a stool. She hasn't done that in awhile, but Melissa wanted to try it since it seems to help bend the knee.
Melissa challenged Amaya to a race. She only used her big toe, and Amaya could only use her left foot.
After the race Melissa had her do some more scoots while she pulled on the knee to help stretch it even more.
Amaya's knee bends. Its always hard to sit there and watch her in pain, but after I'm so relieved, and proud. Afterwards Melissa said, "it was a rough ninety, but we got there." We had read a poster in the hall earlier as she rode thru the hallway. It said that the pain is minimal compared to the joy of reaching a goal (I'm paraphrasing). But there definitely is some truth to that. On the way out Amaya said her pain was at a five, which is average for after bends. And within a few minutes she had gotten over it. Later I noticed the dried tears on her cheeks, which melted my heart a bit.
Later we went to Costco. Amaya sat in her wheelchair (its to big for her to walk in there), then she held onto the back of the shopping cart while I pulled them both. It wasn't easy navigating the crowds, but we had fun and got some smiles along the way.
Later we got to visit some family friends. I caught this picture of Amaya reading to her friend Alex.