amaya at lake

amaya at lake

Friday, September 28, 2012

The end is near

     Leading up to our appointment Amaya was pretty nervous. The night before she said she was afraid that her fixator would be removed that day. But we reminded it was just a check-up, and that when the fixator will be removed we'll have time to plan for it. After that she was pretty calm.
    As we pulled in dad played a fun song that the girls like and Amaya said "I'm not scared now." I admit even I get a bit nervous each time we go. Its just such an emotional thing, and a bit nerve racking.  I always have to work hard to stay calm. When we checked in it didn't seem as busy as we've seen it in the past. We got there at about nine thirty and were out about eleven. That includes the half hour long that it took to take x-rays. As Amaya was back getting x-rays me and Lidie saw two other people with fixators on. It's funny, when she first had hers on we only saw a few, if any, but now we usually always see at least two others with fixators on. As we sat there a girl came back form x-rays and the family sitting next to us looked at each other, grimaced and said. "Oh my. Can you imagine? Did you see that?! That girls had a pin going all the way through her leg! Ow." I just had to smile. Because I'm sure to someone who hasn't had a fixator it seems so crazy, and strange and painful and sad. We know better.
    As Dr. Nelson was opening the door to come in we heard him talking t the new resident. He said, "she's the poster child for lengthening." That's always nice to hear. He told us that Melissa had emailed him and mentioned her concern with Amaya's stiffness in the knee. He said he wasn't concerned as long as she was able to get to at least ninety degrees. Dr. Nelson said the x-ray looked great and that we could now fill in the paperwork to get her scheduled to have it removed in a few weeks to a month. Wow. He explained to the resident that normally you leave it on for twice as long as it took to lengthen. So in Amaya's case it took three months to get her eight cm, so she would've kept it on for six months after that to let the new bone harden, but since she's done so well and her new bone has solidified so quickly she can have hers removed before then. She'll actually have it about four and a half months after lengthening was done.
    He told us that he'll put a rush rod in to help protect the bone. He said to plan to stay overnight, but if she's feeling good and we're ready she may be able to leave the same day. He said it'll stay in for awhile and come out "when she's under anesthesia for something else." Most likely when she has her surgery to stunt the growth of the right leg.
    Amaya gave Dr. Nelson her card and he appreciated it and was surprised that she is going to be walking in the 5K in a few weeks. He gave her his blessing to walk as much as she wanted then have dad push her in her wheelchair.
   I told D. Nelson that Amaya was a bit nervous about having the fixator removed, that she wondered how they do it, and worried about any pain. He told her that she'll be asleep so she won't feel anything. He let her know that its a lot easier than having the fixator put on, but did let her know that she'll be a bit sore and that she'll have an incision where they put the rush rod in. He also told her that they'll give her good medication to take care of any pain. That really calmed her nerves. I appreciated that he stopped and talked directly with her and answered her questions and calmed her fears. That's what I think makes him a great doctor. In addition to being a skilled surgeon he cares for his patients and treats children with respect. I appreciate that and am so grateful for that. Later in the day we could tell that she was calmer and happier. She mentioned several times that she wasn't scared anymore.
   The plan for now is to continue with therapy (three days a week) until the fixator is removed. We will be receiving a call within the next few days to schedule the removal surgery. Other than that we are thrilled to be nearing the end.
    Last night was also rough. Amaya was in a lot of pain, and lately she seems to have a hard time falling asleep. Once she's asleep she can handle the pain. She didn't fall asleep until about nine thirty. I was up from three to four then at six fifteen. It'll be so nice having some regular sleep again after the fixator comes off. We've adjusted to a new life of normal with a fixator (normal pain, poor sleep, pin care, therapy, etc.) but it'll be nice to be back to our regular normal.
   Thank you all for all the love and positive thoughts. It's nice to know how many of you are as excited to know the fixator will be off soon.
While Amaya was waiting she was drawing and writing her her Diary of a Wimpy kid book. She drew Greg Hefley with a fixator.
Lidie while waiting for Amaya and Josh to get back form x-rays. Apparently the woman who took them back for x-rays wasn't sure how to handle the fixator because it took half an hour for her to get the pictures. Josh said she had Amaya laying and moving in different positions. At one point she even had Amaya hold her leg up high in the air. 
Here's her x-ray. Pretty amazing, huh?
Here's a close up of the new bone.
Here's another one a little bit closer.
Dad and Lidie in the room. Lidie was reading while waiting.
At lunch Amaya drew herself (notice the fixator?) and then started practicing her signature. She tried doing it fast because "that's what doctors do."
Here's a picture from another kids blog that I read before Amaya had her lengthening. This is what his rod looked like after his fixator was removed. So Amaya's might look a little bit different, but at least you can get an idea of what a rush rod looks like.

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