amaya at lake

amaya at lake

Sunday, March 25, 2012

Sunday, Sunday

     Today we just stayed home and relaxed. We asked Amaya if she wanted to go anywhere, but she said she'd prefer to stay home and relax (secretly we did too). And so that's what we did. We rested, slept in to 8:30, ate, watched movies, colored, and played games. Even though the plan is to relax, we know that that doesn't exclude us form all our fixator related tasks; turn the bar, give med.'s, get Amaya some time in the wheelchair, shower and change the gauze and physical therapy. So as we relaxed, we had a looming to do list. We incorporated our time in the wheelchair with games, drawing and eating dinner. We alternated being up doing things, then laying on the couch watching a movie. Even when Amaya is on the couch resting we still keep her knee bent as much as possible and her heel off the couch. Her heel is almost healed, but looks like a bloody blister.
     After lunch (she still has a very small appetite) and her next dose of medication I did a half hour physical therapy session with her. I could tell her knee muscles were working, but tight as well. I pushed her hard (holding bends to the count of twenty and forty and pushing the knee in more and more). She cried quite a bit, and finally was getting so loud and whiny that I told her that I should record her so that I could show her therapists. She quickly pulled it together and stopped. It's so funny how kids will be so cooperative with others but then give their parents a hard time. That's not to say that it isn't painful for her, its just that she would never yell or whine at her physical therapists.
     She did some whining before her bath too. She even tried claiming her tummy hurt so that she could skip the shower. I told her "no" we have to take care of her and this is how we do it. I tried turning the chair so that it would face the other way and so that her fixator would be closer to me but the chair didn't fit. Oh well, at least I tried. The top pins were once again the hardest to get to. The middle ones had some gunk and extra skin stuck on the pins that I tried to remove. I got some of it, but its so hard to do. The pin sites are so close together that its hard to get in between them to clean them. And she was feeling it and I didn't want to cause her too much pain. I did get a better picture of that pin site today and its down below. I think we're starting to get a rhythm down. That plus I work quickly (I try to get it over with as quick as possible for her). After her shower Josh carries her down stairs and puts her on our bed. I have her lay on her side so that I can have easy access to the pins so that I can wrap new gauze on the pins.
     At bedtime she had a hard time falling asleep (each night seems to be getting tougher for her). She feels uncomfortable and in pain. She begs to let us bend her knee and to remove the bar (that locks the bottom of her fixator to her top part). The reason she has to do that is that with the bar in it forces her leg to be straight and stretching all the muscles under her leg. As the lengthening continues this will get harder. As of today we've been lengthening for fourteen days, which means we've gained about fourteen millimeters (one centimeter and four millimeters). Our goal is to reach eight centimeters.          
      Wish us luck, keep the good thoughts and prayers coming because it's only going to get tougher from here on out. Oh, I almost forgot to mention my highlight of the day; being able to hold Amaya on my lap for the first time since her surgery (way back on March 6th). She asked if I could cuddle her and I offered to try having her sit on my lap and she jumped at the chance. It was wonderful holding her and hugging her. Definitely not the same as sitting next to her or cuddling beside her. I could feel her fixator pushing in on me and was a bit timid to bump it or hurt her.

This was during my PT with her today. She was able to hold her leg up for the count of ten several times. I can feel that leg getting stronger! 

Here's a better picture of the middle set of pins (the ones right above her knee). See how close they are, compared to the other two sets of pins? You can see some of that "gunk" on the pins. 

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