Today is exactly twelve weeks post surgery. Time is very strange during a lengthening. Twelve weeks may sound like a long time, but it sure doesn't feel like it. Especially since we still have such a long journey ahead of us. But, it is comforting to know that we've survived those twelve weeks. And if we can do twelve, then we can certainly do another twelve or twenty four or forty-eight. I'm so glad that in that time Amaya's hip has healed, she's done exceptionally well (stayed healthy, only had a few minor falls, had only one small infection, has done well with her lengthening and physical therapy). I'm so happy that we're almost to the end of the lengthening (only five days left), and thankful (we were told it could take up to four months for this part, but we'll be done in 13 weeks).
Today at the chiropractor's office I talked with another patient there (a kindergarten teacher) who had such kind words to say about Amaya. He was impressed that she knew what she wanted to be when she grew up(an orthopedic surgeon), that she knew what a surgeon was, that she could read so well, how well she was doing in school and therapy. He gave her praise and encouragement. As we said our good byes and left I noticed that several other people in the lobby had been listening and watching us. They smiled at me with such loving, kind, encouraging faces. I'm not a mind reader, but it felt like their eyes were telling me so much. I just smiled back and walked out, a very proud mama.
We had an hour before our therapy appointment so we went to the playground at therapy to play. Amaya pushed Lidie to the playground (down and up a ramp). She wants the wheelchair to use after therapy when she'll be tired. Before that she uses it as a walker and Lidie gets a ride.
Amaya's first time on a slide with her fixator. She did great! Then she did it about ten times (which is great exercise for her knee; walking and climbing up the stairs). She was playing, but playing is sometimes good exercise/physical therapy.
Then the girls played on the "bongo drums." I had to remind Amaya to lead with her right leg (her stronger leg). Then she said, "my left leg should be stronger, its tough as nails and been thru a lot. But it still is doing good." I told her that maybe in a while it will be stronger, and yes it is definitely tough as nails.
Then she swung on the "mango swing" while she listened to the Eye of the Tiger. She asked if she could hear it six times, because then she could get to ninety degrees today. I think she had an idea that it was going to be tough. Dad gave her a pep talk in the morning, and reminded her to do her best, be nice to her therapists and me.
After a knee massage, talking about the weekend (while they worked), and stretching the knee then Amaya went into the hall to ride the bi-scooter. She had a hard time keeping her heels down and bending her knee.
Amaya walked into the other gym then did seventeen stand to sit exercises/stretches.
These are usually a little bit tough, but today they were very tough. She had to work hard to bend the knee and stretch it so that she could sit. After the ninth one she started crying and had to work harder to stretch the knee enough to sit. She usually only cries when it really hurts. She kept at it and did do all seventeen of them. Melissa said that she could tell that hitting ninety was going to be really tough today. I think we could all tell. I was dreading measuring. My heart started to ache.
When we went back into the peds gym we started knee bends. At first Amaya's knee was at 28 degrees, that's the least amount she's been at this entire time. She made a quick jump to 50, then sixty. Then had to really work to get to 70. Today was exceptionally hard; almost torturous (for her and me). I fought back my tears and had to stay focused. After about twenty five minutes of pushing and pulling and stretching with all her might (she never gave up!) she said, " I can't stretch any further." But we were only in the 70's. I wanted to say, "okay, were done. Let's go." But we couldn't, we had to reach for 90. But, I desperately wanted to spare her anymore pain. She continued to work hard and push then made it to 80. Melissa said that 90 wasn't a realistic goal for today, and that we would shoot for 84 (because three days off so late in the lengthening process was really working against us). She said that if Amaya could reach 84,we'd stop there. "Promise?" Amaya asked, then her and Melissa made a pinkie promise. So Amaya worked hard, pushing and pulling, thru tears and sweat and pain and made it to 84. She worked so hard for that 84. It took thirty minutes to get there, and we made Melissa late for her next patient (which we hate doing to her and her patients). Melissa said that we can try to work toward getting back to 90 during the week, which Amaya is glad about (she hated not getting to 90). Thankfully Amaya continued to work hard, be kind and didn't give up. She was in pain when we left, but it went away fairly quickly (considering). I had to go to her school for a PTA meeting and she decided to go to school for the rest of the afternoon (about three hours). Her teacher said she did great. After school we went to eat diner at Souplantation (one of Amaya's favorites). Amaya's grandparents offered to treat us there as a motivation/reward for Amaya to reach 90 today. Even though she didn't hit 90, she definitely deserved it; she worked so hard and did her very best. I'm hoping the next few days ease up a bit. We did her physical therapy homework tonight and will continue to work hard to help her maintain her range of motion. We only have five days left of lengthening and are so close to our goal of eight cm. But, the closer we get to it the tighter her muscles will get (they don't grow as fast as her bone does). Amaya is already planning to be back up in the 100's range about a month after her lengthening is done (a little positive thinking never hurt), so hopefully her optimism and hard work will keep her going.
Later at her school a parent asked me how therapy went today. As I started to tell her she stopped me and said, "oh, no. You're going to make me cry. How do you do it? How do you watch her like that?" She also has a son with a disability; he's endured many surgeries, therapies and had to work hard to reach goals. So I knew that she understood my pain, and why I can't cry at therapy, but have to press on. I tried to explain how my heart aches, but how I have to encourage and push Amaya. It's not always easy, but seeing Amaya recuperate so quickly is comforting. And knowing how well she's doing and how close we are is both inspiring and motivating.
Please keep praying, thinking, and everything else it is you do; we've got tough moments ahead. Again thank you for reading and being a part of this journey with us. Sometimes we feel so alone on this road, then we see just how many of you are reading on a daily basis and following along and it gives us such comfort and strength. Thank you.
Please excuse any typos, I have a migraine and I broke my thumbnail off and I'm having a hard time typing.