Last lengthening weekend

      This was our last weekend of doing turns. It's been a daily part of our lives for three months and one week. Each day, four times a day (sometimes three) we used a wrench to turn a rod that was attached to a bar that was attached to nine pins that went into Amaya's femur. It's a pretty crazy concept and one that I had dreaded. I thought it would hurt her, and the thought of all that metal on her leg was unnerving. Some people worried that she'd blame or resent us for doing the turns ourselves and the pain it caused her. But honestly, it turned out to be one of the easiest aspects of the lengthening process. Tomorrow morning we'll make our last turn before we head down to our doctor appointment. It's pretty exciting and emotional. Its a pretty complex set of emotions. There's obviously relief, thankfulness, being grateful, excited, pride in Amaya, a sense of accomplishment, glad that the hardest part is over,etc.. But there's also some sadness, dreading/having to prepare for the next phase (that can take up to 6-8 months), wondering/fearing how Amaya will do with the next phase (but, deep down knowing she'll do fine), worrying about the next few weeks of PT until her muscles grow and catch up to her bone growth (that can take about a month or more), wanting a break for Amaya and us all, knowing that our journey isn't done yet, and wishing it was. There's just no easy way of dealing with all of this. And I realize that there is a lot to deal with, and we have dealt with it for weeks.
     This weekend we planned to do nothing, since Amaya was in a lot of pain and fighting a possible infection and we weren't sure how she'd do over the weekend. Friday night was another rough night (the third or fourth in a row... I was so tired and worn out). She went to sleep easily, but was up every hour until about one am.. At that point I can't remember if she woke up or not, because I just couldn't stay awake any longer. She was up bright and early Saturday morning, at five thirty. Thankfully Josh got up with her and I got to sleep in until seven thirty when Lidie woke up. Her biggest complain was her hip pain. I had my book club that afternoon so I got to go and have a break while Dad was left in charge. He took the girls in to town to buy some candy from the candy shop as a nice treat/reward for finishing the lengthening part of therapy and as a distraction from Amaya's pain. While they were there they found a yard sale across the street where they bought two things; a "practice doctor game" (aka. Operation) and an "Eye of the Tiger" felt painting. After my book club I did some grocery shopping (because its so much easier when you don't have two girls and a wheelchair and/or walker to lug around as well. I took my time and enjoyed my break, but sure did miss the girls. I still worried and sent dad reminders to turn the rod, give her pain meds, and antibiotics, and to do knee bends, and wear her ankle weights, etc. although I was gone, my brain was still there. I ran in to two different friends as I shopped and it was nice to catch them up on Amaya's progress. One woman use to be Amaya's preschool teacher and she had such kind words of support and praise of Josh and myself. Which is humbling and nice to hear.
     Later that night I did our PT homework before her shower. As we removed the gauze the gauze on the top pins was really stuck and it took a long time to come off. Amaya cried a lot because it pulled on her skin so much. The pins still looked bubbly and bothered her a lot. Thankfully, she had a good nights sleep (first one in about four days). I even had to wake her up in the middle of the night for her antibiotic. She slept the rest of the night and woke up at six thirty. We all woke up feeling rested (a first in many days).
    Today we stayed home, rested, watched a lot of movies, the girls played a little, Amaya wore her ankle brace several times (it gives a nice stretch. She also wore it while she had her leg propped up against the wall, that way gravity and the weight would help her leg bend), we did PT homework (her knee is so tight! Melissa said that as we continue to lengthen these last few days the muscle would get tighter, and the pain would continue or increase). Which makes me dread tomorrow's therapy session. I know we'll have some rough sessions in the days to come. Tonight in the shower her top pins had some leakage and the gauze was tuck again (ouch! more tears). I took some pictures of her pins to show you.

While I was gone the girls played dress up and put on a show/play.

After Amaya did her PT bends and stretches Lidie wanted to do hers. She's really funny and wants to do it just as much as Amaya does.

Here's Amaya and her new "piece of art" that she bought at the yard sale. I think its pretty cute that she bought her first "piece of art" and that its "The Eye of the Tiger," but I gotta be honest I'm not a fan of felt paintings nor am I impressed that it "glows in the dark," which the girls are.  Good thing its staying in her room.

 

Amaya up and playing, but she did seem to get tired after about thirty minutes. But, she had a good day pain wise. Her hip only her at certain times, and we were able to control it with pain meds (she only took a couple doses. A big improvement from yesterday and Friday).

 

Here's her bottom pins. No real changes there, other than a little redness, but nothing to worry about. These have been a bit itchy, but she can tolerate them pretty well. Sorry the picture is blurry.

 

Here are the middle pins. These are doing well. The yellowish-green skin on the pins are her scabs (they don't look that color in real life, its more of a greenish-brown. I think the flash made them look that way). During her shower we push them down with a Q-tip so that they don't attach to much to the pins (they pull the skin during PT when they do). 

Here are her top pin sites. 

Here's a closer look. The scars are bubbly and raised a bit, especially the middle one. The middle pin is the one that stuck to her gauze the most. It almost looks like a blister. They had more drainage tonight; it looks kind of whitish/yellowish.