Amaya's Journey with PFFD: The past couple of days

Here's an update on the past couple of days. Thursday Josh took the day off for his medical appointment and then went with us to physical therapy. It was such a nice warm day and it felt great to be out of the house. At physical therapy Amaya worked with a new therapist, Lisa. I played with Lidie on the other side of the gym and Josh got to be with Amaya. Amaya did excellent, she's been doing really well at her appointments. Lisa taught Amaya to transfer in and out of her wheelchair by herself. She also got Amaya to stand on her own too (which was tricky, and made me nervous, since she's still not allowed to put any weight on her left leg). She has been getting from the wheelchair onto the couch and back, with little to no help at all.
Friday we had an early physical therapy session at 8:45 in the morning. We had to make sure to get up early to have plenty of time to get ready. It takes almost an hour just to get Amaya ready and out the door (taking the bar out of her fixator, getting dressed, going potty, turning the bar on her fixator, brushing her hair, eating, taking pain medication, brushing teeth, etc.). All those things happen at a slower pace than normal. She doesn't move as quickly as she use to and needs more help getting ready than before. Her physical therapy session was forty five minutes long and with Melissa. I appreciate Melissa's energy and enthusiasm. Truthfully every physical therapist we've worked with has been wonderful, they're able to balance work with fun. They have a great amount of energy and give lots of encouragement. Amaya told Melissa that she knew how to break dance and would show her her moves once her fixator came off. She also told her that she can shuffle and dance the Macarena in her wheelchair. It's nice seeing Amaya be herself; sweet, kind and funny. Amaya worked hard at physical therapy and was able to get her knee bent to 105 degrees. Melissa said that as we progress with the lengthening the physical therapy will become harder and harder. The bones grow faster than the muscles do, so maintaining flexibility will only get harder. Today marks the seventh day that we've been lengthening (turning the rod on the fixator four times a day). Which means that we've gained about seven millimeters. We have our first follow up appointment with Dr. Nelson tomorrow and then we'll see how she's doing and how much bone she's gained.
After physical therapy Amaya is tired and a bit worn out. She refuses to nap, but has been going to sleep early (between six thirty and seven o'clock). We're continuing with our exercises at home, but Amaya gives more resistance to us than she does to the therapists (and does more whining and complaining with us). She's also been asking to not take her pain medicine (Tylenol w/codeine), not because she isn't in pain, but because she doesn't like how it tastes. I wish they would have put a flavor in it, it sure would make medicine time a whole lot easier. We offered her the over the counter children's Tylenol since it has a grape flavor and tastes better than her other one. She took this one more consistently and without a fuss, but it just didn't seem to be taking care of all of her pain. So after about two days of trying that she decided to go back to the yucky tasting Tylenol w/codeine. I hope she'll take it more consistently, I hate to see her in pain. Today she's been in the most pain since we've been home; she keeps complaining that her hip is hurting.
At night she's been falling asleep quickly, but waking up several times in sweats, and in discomfort. She's also been having some nightmares and restless sleep. Thankfully it doesn't last the entire night, just the first few hours after she goes to bed. Rubbing her feet and legs seems to help her a lot, so does laying next to her. She's still been sleeping in our bed (she likes the comfort and has been afraid to sleep alone), but says she's ready to try sleeping in her own bed tonight.
Yesterday we stayed home and enjoyed the snow storm. The girls played, watched movies, and colored. Today Lidie plans on playing out in the snow with dad and me, Amaya just wants to stay inside relaxing. Her hip incision has been hurting a lot today and she doesn't want to move very much. She's shed some tears, but finally agreed to take her pain medicine. It took some coaxing to get her off the couch to go potty and to sit in her wheelchair. She's in her wheelchair now, watching Star Wars. She asked if she could just get on the couch and relax, but we explained that she doesn't need to relax, she needs to take care of her body. One of the things we've been explaining to her is the difference between her last surgery and this one. After the last surgery (her super knee) she got to come home and relax (lay on the couch with her leg propped up,etc.). But this time she needs to keep her leg moving, not relaxing. Relaxing makes her leg stiff and painful to move. She needs to be sitting up either on the couch or her wheelchair (that keeps her knee and hip at a ninety degree angle), doing physical therapy or movement. She needs to be working on either bending the knee or straightening it. At night she works on straightening it (when we screw that rod in place, it keeps the leg "locked" in a straight position) and during the day we work on bending her knee. It's tough, and at times she just wants to be left alone. Josh and I keep having to push her to do what's best for her leg.
I started this post this morning and am just now finishing it (at 4pm). Amaya has been in a lot of pain today and needing lots of foot rubs, and extra TLC. She had a couple of meltdowns; that leave us all feeling worn out. Later she watched several movies, worked on homework and on a workbook from our friends Terry & Genesis.