Last night before bed I sent and email to Dr. Nelson with some questions. I asked if the tightness and pain (the pain is mostly in her knee, and she's complaining of her toes being numb as well) that Amaya has been feeling in her hamstrings was normal at this point in the process. I kind of thought all that was behind us since we finished lengthening so long ago (almost two months ago). I was pleasantly surprised to see he had emailed me back this morning. He said that the tightness was not uncommon. He said we can work it out and was confident that Amaya would have no problem with that. He said that when correcting any deformity, including a lengthening the muscles want to spring back to where they were for a time. I was a bit relieved to know that it was normal, but knew that that meant we would have to work hard to help those muscles stretch. So even though things are much easier now that the lengthening is complete, they are still by no means easy. Tonight was also a rough night. It only took about fifteen minutes to straighten the leg and lock the bar in place, but Amaya was in so much pain and was crying and screaming. I felt terrible because I couldn't stop, and just had to push her knee down and stretch it. But, once it was all done, she thanked me for "doing all the hard stuff." She continued to have pain in her knee and numb toes so I rubbed them for awhile, but once she's asleep she's been able to sleep throughout the night, which is very nice.
Today when we go to therapy Melissa asked Amaya if she would be willing to meet a little girl, Penelope, who just came in for her physical therapy evaluation. She said sure, but was a bit shy at first. It was so nice to meet Penelope and her family. Penelope is the same age as Amaya and just had her fixator put on last week. She's lengthening her tibia, so some things are a bit different but many are similar. Both girls have PFFD so it was so nice to meet someone else who was on a similar journey as us. This is the first family we've met that has PFFD and lives fairly close to us (within two hours driving time). Melissa took Amaya back to start therapy while I continued to talk to Penelope's mom. We exchanged information and hope to keep in contact. I'm sure our paths will cross again since we're both being treated by Dr. Nelson and working with Melissa. I invited them to come and watch Amaya do her therapy and they stayed for pretty much the rest of the time. Penelope got to see first hand some of the stuff she'll be doing. The girls are hoping to meet Penelope and her brother for a play date at the playground and some frozen yogurt soon.
I didn't get many pictures of therapy today since we were busy talking, but Amaya had a busy day. Melissa straightened her leg and put a 1 lb. weight on it to straighten the knee. Then she applied new tape to her knee, then stretched the knee. Amaya also rode the bike (we did the long hoop and Penelope and her family joined us), rode the bi-scooter, and climbed the ladder. Then she did some bowling while doing lunges to stretch the knee. Amaya's knee was at 57 degrees to start (quite an improvement from yesterday). Melissa set 92 as a goal for today, and within a few minutes Amaya was in the 80's. Amaya was in pain and said that she couldn't bend anymore, but Melissa said that she could and to just do a few more bends. Then she was just shy of 90, so Melissa told her to do one big bend. Amaya said she didn't think she could, but tried her best and was able to get 94! I reminded Amaya that when she does her best she does amazing things.
When we got home there was a message that we got our referral processed an are cleared to schedule Amaya's next set of appointments. So we'll take care of that tomorrow. After our therapy appointment tomorrow we'll be leaving to Las Vegas for two days and will be missing therapy, but after that should be back to a normal routine. We're going to try to do a Monday, Wednesday, Friday schedule with Melissa and see how Amaya does with that. I wont be updating until the weekend, so thank you for reading, following along, being a part of our journey and all your thoughts, and prayers.
Here's Amaya riding down the long hall way. We did the long loop today and had a "parade." Lidie led the way then went Amaya and Melissa, then Penelope and her dad then myself, then Robert and their mom. I also got a video of all of us riding but didn't want to post it until I got Penelope's parents approval.
Here's me after a visit to the doctor aka Amaya. She decided that my burn (its only a sunburn) needed to be taken care off. She said I need to change the gauze on a daily basis (she even told me I can purchase it in bulk online), and to watch for any signs of infection (redness, puss, pain, etc.). She was quite thorough.
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