Daytime vs nighttime

     Yesterday after I posted my blog (I've been doing it earlier in the day, since bedtime is taking much longer and I'm not able to do it at night) Lidie and Amaya started playing doctors while I made dinner. They were so cute and funny. They payed so much attention to detail and mimicked Dr. Dixon (their pediatrician), Dr.Nelson and his staff so closely. They even sounded like Dr.Nelson and his staff, it was very cute. I liked that they were both doctors. I was their patient and they treated me for a fever, infection, looked at my fixator, took out a splinter, gave me a cast, and a band-aid. Amaya also put two casts on Teddy and Lidie put one on Simba.

Dr.Amaya

Dr.Lidie

Their doctor bags (some were gifts, some bought and some made). We have collected doctor "supplies" from appointments, friends, gifts.

Amaya's patient, Teddy with his leg cast sitting in her dolls wheelchair.

Lidie's patient Simba with his leg cast and cone.

     After they played we fed, bathed and got the girls ready for bed early. Amaya was so tired from waking up at four thirty that morning plus all the walking she did at school (that was the most she's walked outside of physical therapy). When I did her stretches before bed I also stretched her hip and she said that, that felt so good to her. It takes about fifteen to twenty minutes to stretch her legs before I lock the bar in for the night. We're no longer locking it in during the day, since she's no longer having a hard time with that anymore (instead I spend that time stretching her knee and doing our physical therapy homework). She was so tired and fell asleep by six forty. Since she was so exhausted she spent almost a full hour asleep before she woke up in pain. She had the same pain and numbness in her foot that she complains of every night. Ugh! It's terrible to see her in such agony and pain. There were five minutes that were really tough, but felt like hours. She screamed, cried and wriggled in pain. Once it was done she fell back asleep but I was still upset and crying; there's nothing worse than seeing your child in pain. It's pretty torturous. Once that initial moment of pain passes, then she stays asleep but continues to moan and groan in pain. I sat next to her rubbing her knee and foot for the next couple of hours. I wished so badly that she could just sleep in peace. It saddens me to see her nights be so rough, I know that they're "supposed" to be tougher than the daytime, but it's still hard. After I fall asleep I rarely hear her (I think I'm just so exhausted), but Josh does. He says she moans throughout the night, but he can shush her to stay asleep (like when she was a baby). So as you can see nighttime is definitely the hardest part for us, and quickly becoming my least favorite part of the day. The only comfort I get is knowing that this will not last forever, she will benefit from this in the long run and that my being with her, massaging her helps her.
     Today she woke up at five, the pain wakes her up then she isn't able to fall back asleep. She watched a movie until I woke up. I got her ready for school. She did great today! She took her walker again. She even transferred herself from her walker to the carpet to sit with her friends (something she taught herself to do). She did "ballerina" stretches with her class to help alleviate the tightness and pain she feels. She said her pain was often, but not too bad. I'm so thankful for Mrs.Griessbach's efforts to accommodate Amaya's stretches. Amaya is excited to show her friends her bottom pins tomorrow (she told me not to wrap them in gauze tonight). We'll see how they take it. When we picked her up for therapy it was raining hard, but thankfully Josh was able to help me get her in the car. Her teacher said that Amaya showed her class how much she's accomplished and showed them how far she's lengthened (there's a mark on the fixator that Dr.Nelson put on to measure how much the rod has moved). I was impressed that she understood it enough to be able to explain it.
     At physical therapy Amaya showed Kim and Melissa how she transferred onto the floor by herself. Melissa said kids are so smart and resourceful. They have a way of figuring things out and finding solutions to their problems. Then she got a massage from Kim followed by some stretches. During the stretches Melissa and Kim talk with Amaya and keep her distracted. She always enjoys talking with them. Then Amaya rode the bike. They took us to a new hill today, that was steeper than the one she did last week, but she handled it just fine. She seemed to have more strength in her legs and was able to pedal more easily. Lidie was very sweet and encouraging to her and gave her a kiss on the elbow then a thumbs up. Then Lidie started giving us all thumbs ups or thumbs downs. She certainly provides some entertainment. I'm so thankful for the patience Kim and Melissa show to Lidie. Before measuring her knee bends they first did some stretches. They held the first one to a count of forty five. Kim and Melissa worked hard to keep Amaya distracted during the painful work of stretching, which isn't easy. Amaya started crying and had a hard time focusing on her counting. When they measured her knee she got ninety nine, which is great. Melissa said she probably could have gotten higher, but that it was still good. She said that we might start dipping into the nineties in the next couple of weeks, but that we'll keep aiming for the high numbers that she's been getting. Melissa said she couldn't believe how good Amaya was doing and what good bone she was growing, I agreed. I have heard some stories from other parents about complications that their kids had and then they had to have several follow up surgeries. Thankfully we haven't had any complications or issues with Amaya. I asked Melissa if she thought we should slow down the turns, or keep them at the same rate. She said that as long as Amaya's pain was under control she didn't see any reason to slow down. We'll see what Dr.Nelson says on Monday at our appointment. Keeping at this rate does make the lengthening time go by faster, but does put a strain on Amaya's muscles (they struggle to keep up with the rate that the bone grows at). As we left Amaya said her pain was at a "three," which is pretty good.
     When we got home she watched a movie while I massaged her knee and foot. The girls and I had some Mexican hot chocolate (who can resist on such a cold rainy day?) then did our physical therapy homework(Amaya said she had new homework from Melissa; to use a skateboard to push with her knees), ate dinner (Amaya ate so much today; first time in awhile), then showered and got ready for bed. We had early bedtimes tonight too, both girls were tired and both were asleep by six thirty. I sat in bed typing this next to Amaya. She's sleeping now, but had a rough start again. She even asked me if I could just take the bar out and let her bend her leg. She's been asleep for almost two hours and has been whimpering on occasion then tries to move to get comfortable. I hope she sleeps well tonight.

Lidie playing soccer at physical therapy.

Amaya working hard to pedal the bike.

Amaya riding the bike today.

Amaya riding the bike up the hill. This is the first time she's done this hill. It's steeper than the other one, so it was tougher to do. But, she did great.

Amaya racing Melissa down the hall.

Look at that sweet girl struggle to get such good numbers. It's so painful, but Kim and Melissa try to make it easy for Amaya by distracting her and talking with her.

After her knee bends Amaya shot some baskets (a great way to forget those painful stretches!). She did a good job of keeping her legs straight while she threw the ball.

Amaya sitting on the giant foam chair thing ( I have no clue what that thing is called). She was waiting to throw some balls into the ball pit. She made two "baskets" thru the triangle "hoop."