amaya at lake

amaya at lake

Monday, April 2, 2012

Second follow up

Today was such a busy day...
Random Stuff
Amaya's appetite seems to be changing day to day.
She also doesn't like how her vitamins taste anymore and is refusing to take them. Even the gummy chewy kind.
I forgot to post that over the weekend she was able to lift her left leg up all by herself (using only leg muscles) for the first time.
Josh was awarded three days off while Amaya had her surgery (those won't count against his sick days or his non-work days, yay!)

     Today was Amaya's first day back at school. She did excellent! She was a bit nervous when we got there (that kids would stare), but one of the teachers Mrs. Lowder came and gave her a very warm hello. She reminded Amaya that she had a lot of people looking out for her. That seemed to help a lot. There was a new student in class today and that seemed to be a good distraction for the first few minutes. I was able to talk with both of Amaya's classes today (kindergarten and first grade). The kids were helpful, kind, patient and sweet. Amaya did amazing; explaining what happened, answering questions and letting the kids touch her fixator. We showed them how we turn the bar, and explained how the fixator worked. The kids had really thoughtful questions. They wondered how she slept, how the fixator worked, how long she would have to wear it, etc. It was interesting, all of the kids in kindergarten wanted to touch it, but only about half of the first graders did. The kindergartners practiced giving Amaya space, and protecting her while on the playground.
     While we were there Amaya told her friends that I have been helping clean her gauze and do some of her physical therapy. Then she said "and she's good too!" Which made me smile. Amaya told the first grade class that she wants to be a doctor when she grows up and help other kids like her. And that she likes looking at other kids with different bodies, because "they're amazing!" There was one first grader who was a bit upset by it all and was crying. She asked to go to the back of the room so she wouldn't have to see it. Another boy stared and made faces, at all the pictures I showed him and at Amaya's fixator. But, all in all it was great! We were only there two hours today.

Physical Therapy
     Cassie said that the exercises I did over the past four days sounded good. She reminded us that therapy will only continue to get harder as we go along.  We let her know that Amaya has been having a lot of calf and hamstring pain. She said that was normal, but suggested we keep doing the calf and hamstring stretches at home (just a reminder; calf muscles start above the knee down to the feet and the hamstring muscle is from the bottom of the knee to the butt). Cassie told us that she doesn't recommend we use icy hot or any other cream like that because it would bring too much blood to the area. She said in an acute injury like this, it isn't always best. She recommended we just massage with normal lotion. When we did our bending Amaya said "it hurts, it hurts. I'm gonna try for 103 degrees." She was close she got 102. Cassie told us that Amaya is one of the best patients they've had with a fixator. A lot of the others scream and cry. I told her she saves all that for home. Although I'm glad Amaya doesn't give them a hard time, I reminded her that she needs to give her mom a break too. She agreed.

Doctor Appointment
      We were able to get our x-ray today with no problems (thanks to Marylou's help!). Then we were taken back pretty quickly. Dr.Nelson looked at the x-ray and said it looked great. He said we've gained 22.5 mm (2 cm. or .88 inches. So, just about an inch!) of new bone! He said that the hip looked great. That she had originally gained about 12mm of length in the hip after the work he did there, but now it's closer to 5mm. If it would have been in a cast it would have stayed at 12mm, but didn't think the work she needed and had done there was enough to warrant a full cast. He said the knee pain was normal. He recommended using hot and cold packs (alternating between them). We told him she started school today and he thought that was a great idea. He said that would be a good distraction for her. He said to continue to do four turns a day, but after our next appointment (in two weeks) we'll probably go down to three turns a day. He said that at that point the risk for preconsolidation (when the bone starts to harden before you're done lengthening) is not as bad, once you've gained a fair amount of bone. He also said that after our next appointment Amaya will be allowed to fully bear weight on her leg. He said she's doing good, that pain is part of it. And said that children's Tylenol should be enough to help with pain, but to continue to give her the Tylenol w/codeine before physical therapy and bed. We're hoping that will help with her mood and appetite (cutting some of that codeine out of her system).
    Dr.Nelson told us that tonight he had a meeting with the board, they're trying to start a lengthening center here to service local patients. He said that he knows of local families who have traveled to Baltimore for treatmetns in the past (thats' where we were originally told Amaya would have to go). I'm so thankfull that Dr.Nelson is close by, he's amazing! It would be nice to have such a center on the west coast to service this side of the country. Dr. Nelson and the assisting surgeon Zach (I forgot his last name) both old us that we are doing a great job and "you are doing amazing." It felt so good to hear that from them.
    When we first got to our appointment the nurse gave us a phone number of a mom who wanted to talk with us about the lengthening surgery. She's deciding whether to do it for her daughter or not. I gave the nurse our blog info to pass on to other patients and hopefully help them out in some way. I got to talk to that mother tonight and had a nice conversation with her. Hopefully we'll be meeting them in a couple of weeks. They live locally so that should be easy and nice. We were so fortunate to have found blogs, and other families that helped prepare us and guide the way, so I hope that we can do the same for others.

Our sweet girl sneaking in some frozen yogurt in between appointments.

Here's a photo of her x-ray from today. You can see the six pins in her femur. Right above the three above the knee you can see where the break was and where the new bone is (the gap). It's about an inch!  You can also see the work he did on her hip as well. Toward the bottom on the right, you can see a cut into the bone and then a grayish area. That's where he made the minor adjustments to her hip. Pretty amazing, huh?!

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