amaya at lake

amaya at lake

Monday, May 21, 2012

Fifth follow-up

Amaya rode the scooter to and from one of the adult gyms (there isn't a picture because she was going so fast! Melissa said Amaya had good balance on it. When she was riding back Cassie told Amaya that she was looking good). Amaya walked up the "baby" steps first to warm up. Melissa asked her if she wanted to go down them first, but Amaya went for the regular ones instead (I love that she doesn't take the easy way out). She's been going up and down our stairs at home.

This is when Amaya goes from a standing to a sitting position. It looks easier than it is; she has to get a good bend (aka stretch in her knee to sit down).

Back in the peds gym Melissa did exercises with Amaya (the same kind we do at home). Melissa could tell that Amaya made big improvements in her "small bends" (the ones we do at home). Then Melissa started massaging Amaya's knee. As she did she started doing some "medium" stretches with Amaya. After that we started measuring her knee bends. She was in the sixties then seventies, then jumped up to eighties. She slowly creeped up from eighty-two to eighty-five. It took a couple of extra stretches to get her knee past that. She started to feel lots of pain in her knee and hip and just when she thought she couldn't do anymore (she said she'd settle for ninety) but then it went from eighty-six to ninety-one (woo hoo! ninety-one again!). Ninety-one was her original goal and I'm glad she got it! It's extra impressive because it was a Monday, Monday's are always harder. Melissa said, "I didn't let you stop at ninety, I wanted you to hit your goal." Amaya was glad that she did that.

Here she is keeping busy while we waited to see Dr.Nelson. She drew and colored the whole time she waited. We waited two hours to go back (not too bad, others had been waiting over three hours). While we waited I got to talk to a mom whose twelve year old son had a fixator on (his was to correct a club foot), but there were still some similarities and it was nice talking with another parent. When she got back Dr.Nelson saw one of her pictures and said, "I didn't know you were such a good artist." Then she showed him that the girl was wearing a fixator just like hers. He laughed and got a kick out of that.


Here's her x-ray. It's pretty impressive. She's gained about 71 or 72 mm (about 7.2 cm or 2.79 inches). The measurement on the x-rays are always a bit smaller than the actual fixator. 

I love this picture of Amaya; she got up out of her wheelchair to check out the x-ray herself. She was examining it closely and told me, "see, those pins look great." She sounded just like a doctor, and I just had to smile. I called her "doctor Amaya," but she said, "I'm not old enough yet, I still need college then medical school." 

Here's another look at it. This one shows the whole picture. As Amaya pointed out "you can barely see where he worked on my hip, because the bone has healed nicely." We were all impressed with how long her bone is now.

Okay here's what Dr.Nelson said at our appointment:
  • He greeted Amaya by calling her "his favorite patient." Which she thought was cool. He also said she was very mature for her age. I told him how hard she works (and how often). He said its a "whole family thing, so good job." We're all having to work hard; it's true this is definitely a team effort, and I definitely appreciated his comments. 
  • He said that we'll do three turns until our next appointment (June 4th; which is two weeks away). So two more weeks of turns and lengthening; Amaya and I were hoping it would be sooner, but we'll deal with it. It only adds four days, but we are getting so close and ready to be done, so we have some mixed emotions. Hopefully the three turns will be a bit easier for her. He didn't want us to be done turning too early before our next appointment, because they need to lock the fixator in place when were done. At the June 4th appointment we'll be done lengthening and they'll remove the rod we use to lengthen (the small silver one with arrows on it). They'll lock the bar in place with two screws so that it holds and doesn't move. Dr.Nelson will be in Haiti during that appointment so we'll be seeing one of the residents. After that appointment we'll start coming in once a month.
  • He was very happy with her range of motion (she can go from 0-91 degrees).
  • He's also happy with the pin sites, the pins and the new bone she's growing. He looked at her top pins again to make sure they were okay from her fall. He said they looked good, and that it would take a pretty big fall to loosen them.
  • I asked if she needed to start taking any extra vitamins or supplements and he said no, that just keeping a balanced healthy diet should be enough. I also asked if weight loss was normal. He didn't seem concerned, as long as she eats a good mix of healthy foods she'll be okay, which she does.
  • The physician's assistant commented on how well Amaya's new bone looked. And reminded us that weight bearing is what helps her bones harden. 
  • Once she's done lengthening she'll continue to lock the bar in at night (it's not painful anymore, more of a nuisance, but Amaya deals with it). I'm not sure how long she'll have to do that for. She'll also continue with daily physical therapy then it'll drop down to two to three times a week. Melissa mentioned to us today that the first week after lengthening it will continue to be tough, but after that it starts to ease up. Amaya's muscles will catch up to the bone growth (she said that since Amaya does so well and works so hard it should be about a month) and then she'll regain some of her range of motion; maybe get back into the hundreds. She won't gain her full range of motion until the fixator comes off.
      At the end of our appointment Dr.Nelson asked if we would meet with a family. Their son Tyson is just under two and also has PFFD and will be having a lengthening in about a year. We were very happy to meet them, show them Amaya's fixator and answer their questions. Amaya was a good sport and showed them how we turn the rod, our tool, how she walks, and answered their questions. She was honest and said that yes it hurts sometimes, but not all the time. We walked them thru our days. I tried to be honest; yes there are tough moments (some very tough), but they're only moments, the entire process isn't tough. We have a lot of normalcy as well. I gave them our blog to look up; so hopefully it can give them more answers and show them what our days are like. I wish them well; lots of peace, health and joy on their journey.

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