Amaya's Journey with PFFD: First follow-up appointment

Today we started off the day by shoveling our driveway. Josh did most of it while I got the girls ready for our physical therapy appointment. After they were ready I helped finish up the shoveling so that we could make it in time for our 11:30 appointment. We did excellent! We all worked together to work quickly, and efficiently. We were about ten minutes late, which we hated to do to our therapist and Amaya (whatever time you miss you don't get to make up). Therapy was great; Lidie was busy building with blocks and Amaya worked hard. Melissa said she got an email from Dr. Nelson saying that Amaya could start bearing wright on her left leg (which we weren't too sure about). Based on that she had Amaya practice walking by holding on to her knees and with a walker. Amaya was able to get her knee bent to 105 degrees, at first it was only 97 degrees, but Melissa pushed Amaya to get it closer to where we were last week. Getting those last few degrees was tough and Amaya was almost in tears.
After our appointment we had only a few minutes to drive down the street to Dr.Nelson's office for our first follow-up appointment. We checked in at one and waited for about thirty minutes to go back and get an x-ray. Unfortunately there wasn't an authorization on file for the x-ray so we weren't able to get one today. They told us to just go back and see Dr.Nelson and that we'd take the x-ray at our next appointment (in two weeks). We waited in the waiting room for a little over an hour (several people had been waiting for over two hours) so we didn't complain. We got to see Dr. Nelson right away once we went back into an exam room. He said that it wasn't a big deal if we didn't get an x-ray done today but to make sure an authorization is in place for our next appointment (guess that means I'll be making some calls tomorrow). He said that since we've been lengthening for about a week now we almost have a full cm of bone growth. Today is our eight day of turning the fixator (that's 8mm of growth). He said the x-ray today would only show a small gap, and that the next one will show a little bit more. He said that we could continue to do the turns at the same rate (4 times per day). He also said the we could remove the bandage from Amaya's hip incision now and that we needed to change the gauze today. He looked at the knee and said he was happy with how it looked and the bending in the knee. He was also happy with her numbers (the degrees that she's been bending her knee to). He was able to clarify the weight bearing for her left leg. He said that normally kids can begin to fully weight bear on a leg after the fixator is applied but because of the work he did on the hip he doesn't want her to bear her full weight on it. So she can touch the ground with it, and use the walker to walk with, as long as shes not bearing all her weight on that leg. So it seams like there was some miscommunication between him and Melissa. He said that Amaya can start showering now and taking a bath, just not using bubble bath or body wash. She will use an antibacterial soap to clean the fixator. He said that when she's in the bath to put a tablespoon of bleach (so that it's as if she were swimming in a chlorinated pool, which she's allowed to do now). We'll need to use a chair in the shower since she can't stand alone and so that she sits and doesn't get hurt by falling. Before we left he gave us the form to go get our temporary disabled parking placard and a prescription for gauze (we need to start changing it everyday for the next three months). The gauze would help keep dirt out of the pin sites as well as limit the movement of the pins in her skin, which would iritate the area. He took us into the cast room so that a woman (I'm assuming was a nurse) could remove her gauze and clean the pin sites. What came next was about thirty minutes of torture. I hate to seem dramatic, but it was awful, just awful. Amaya was nervous and scared to have the gauze removed, and very anxious about seeing the pin sites. The lady removed the bottom one first which looked great, but Amaya got pretty freaked out. She started screaming, crying, yelling, wiggling and asking us to stop. Ugh! It was so sad to see her like that. I realize part of it was nerves and fear but another was pain (the gauze had begun to attach to some of the scabs and as it would come off it would pull on her skin). The bottom three came of pretty easily, but Amaya saw them she said they looked "weird, gross and like I have a hole in my leg." After that it just got worse. The lady had Amaya lay down on her back then on her side so that she could unwrap the gauze. Amaya kept screaming and yelling at the top of her lungs and started yelling out things like "I hate myself, I hate my short leg, I wish I didn't have a short leg or a fixator, I wish you guys had this not me, ahhh! Make it stop, it hurts and on and on." After the gauze came off the lady cleaned the pins (she put a cleaner on them then rubbed each pin with a wash cloth then with a long q-tip. She scraped of all the extra skin and scabs). It was terrible. I had to look away several times to not cry. Seeing her in so much pain and fear just broke my heart. I don't think I'll ever forget that. As I watched her suffer through her first pin site cleaning I thought of all the other kids whose blogs I've followed and all the pin site cleanings they've endured. My heart ached for al those other kids too. Its so much for a little kid to bear.
Josh tried to hold Amaya down and calm her down (or at least get her to stop yelling so loudly), I held Lidie and rubbed Amaya's hand and leg. At one point a nurse offered to take Lidie to another room so that she didn't have to see all this, but Lidie refused to go (she was so empathetic for Amaya and kept telling me to "tell Amaya its okay"). She just stood in my arms and looked away. After the sites where clean the lady had Dr. Nelson come in and check the sites. He said they looked good. The one on the very top looked irritated (all the other pin sites were healing up well, but this one had pus and was almost as big as a nickel). He said it wasn't infected, but to go ahead and start antibiotics for the next ten days just in case. After that the lady wrapped the gauze around the pin sites and gave us some to take with us until we get our prescription for them filled. During the pin site cleaing, Zach one of the assisting surgeons came in to say hello and check on us. He realized that this was a "tough moment", but asked how its been going. It was nice to see him and I was glad that he came by to check on Amaya.
After we left we gave Amaya her next dose of medicine, went to get a sandwich, get our parking placard then took Lidie to a park to run around. Amaya and I stayed in the car while Josh kept Lidie busy. A few minutes later we met uncle Cody for frozen yogurt. Its funny, how one minute its extremely intense and painful and then twenty minutes later its back to normal. Kids are amazing; Amaya is amazing. How she can bounce back from something so traumatic so quickly is amazing. It's still bothering me. Josh and me are both exhausted from such a draining experience, but her resilience keeps us going. And don't worry I wont be posting any pictures of the yucky pin site.