Done lengthening!!!!!

    This morning Amaya made the last turn on her fixator! It's so exciting to think that we've completed two parts already (surgery and lengthening). Here's some photos from today then I'll update down below.

Here's Amaya making the last turn! 

I took this before Amaya made her last turn. See how the top part of the fixator is almost flush with the bottom piece? 

Here I'm holding up a measuring tape up tot the fixator. The small black mark was put on by Dr.Nelson after her first follow up. The top piece of the fixator (the one attached to her femur) has moved that much. It measured at about 3.1 inches, which was our goal and Amaya's projected discrepancy. 

Here's her x-ray from today. Dr.Jaeger said it looks good.

Here's Dad and Amaya checking out the x-ray.

In the cast room waiting for the turning rod to be removed.

Here's the bottom view of her fixator. 

Here's a close up of the bottom pin sites. That round silver thing is a screw that locks the bottom to the top to hold it in place. That one was already there, but Dr.Jaeger and Maggie (the lady from the cast room) put one in on the top one too to hold the fixator locked in place and to hold the growth that Amaya has gained.

 

Here's Dr.Jaeger removing the top silver rod (it just popped off) and adding the screw on the bottom. He told us to check it every once in awhile and if it starts to loosen up to tighten it. We joked that we never thought we'd have so many tools when it came to taking care of our children. 

Here's Amaya checking out her new "streamline fixator." She said it feels a little different. Dad noticed its easier to rub her leg now, without that silver bar blocking us.

Amaya doing knee bends and stretches with Melissa today.

Knee bends into the ball pit.

Here's Amaya bowling with the scooter.

Here's a picture of what her fixator looks like now.

     This is the piece they removed today (that's what we turned each day to lengthen her bone). And two other small pieces that we didn't get to keep. Amaya asked if she could keep it, and Dr.Jaeger asked Maggie what the policy was on that. She said that Dr.Nelson sometimes lets kids keep them. Dr.Jaeger said, "well you've definitely earned it" and let her keep it. Amaya was excited and can't wait to try to put it on her dolls.

      This morning we got ready and did our last turn before we left to our appointment. Dad took the day off to be with us.  At our appointment Dr.Jaeger looked at Amaya's x-ray and then at her top pins. He said the x-ray looked great and that its "pretty amazing" that she grew that much bone. He said the new bone looks good. He told Amaya "you just grew three inches of new bone, how many people do you know that can say that?" It was a good reminder of just how special this all is. Extremely difficult, but very special/amazing. Amaya asked me to not cry, and I didn't, but sure felt like it; its a very emotional and overwhelming journey we're on. We still have to do PT during the day (still five times a week for about a month then drop down to three times a week) and still have to lock the bar in place at night (to straighten the leg, we're not sure how long we have to do that for). I asked if he knew how long it would take for the new bone to harden, but he wasn't sure. But from all that I've read its usually one month per one cm of new bone, which he said sounded about right. We'll double check with Dr.Nelson next month.  So for Amaya that would be eight months for the eight cm of new bone she grew. We'll return in a month for new x-rays and a follow up with Dr.Nelson (and then every month after that so that he can monitor her for problems and to see the new bone growth and decide when the fixator comes off). So now that the lengthening phase is complete (woo hoo!) we're now in the consolidation phase which is where the new bone hardens. At this point the new bone is weak and is unable to resist breakage without continued support from the fixator (I got that from the RIAO website www.limblengthening.org). If the fixator comes off to soon the bone can fracture or collapse and we'd loose all the new bone growth.

    After we left I talked with dad on our ride to physical therapy. He said that at the beginning you think that three months is doable, but then you start and realize that three months is a long time. And its full of ups and downs. Some weeks we were great, Amaya's pain was managed you felt like you could do it, then the next week it was very difficult. May was long and hard and full of ups and down, not just with this but with work as well. I agreed and added just how emotional it was. Its not easy being the primary care giver for Amaya. It's very demanding and challenging, but we survived it! One thing that I keep thinking about is that we actually got the full amount of length that we needed and made a goal to get! That's amazing to me! We were lucky to not have complications, that AmayaAmaya through all this just to get five, were going to eight, and its gonna take a lot to stop us.' I made up my mind then that no matter how difficult we wouldn't be stopping on my account. So no matter how exhausted, or worn out I was, giving up was never an option. Although seeing her in pain did tempt me, I knew I couldn't give up. And she was remarkable; never giving up, always pushing herself, always trying her hardest. She's pretty amazing. We all had to do our best; Josh, Lidie, Amaya and myself; we had no other choice.
     At PT Amaya did stretches, bends, Melissa massaged her knee, she bowled, and then started bending and measuring (its about thirty minutes of work then fifteen to get to 90). Mondays are always tough, but     Amaya did great (more than great, excellent). She started at 40 degrees and worked so hard and in fifteen minutes got up to 90 degrees! I was amazed! On Friday she got to 81 (her lowest yet) and I was only expecting/hoping for 85. By the end both legs were tired and sore. Dad said, "I don't think anyone, besides mom, and Melissa knows how hard you work to get to that." I have to agree, unless you see it in action, its hard to fully appreciate all her hard work. She's determined to work hard to get back up to the 100's soon and so that she can drop down to three days a week of PT. Her hip bothered her a little bit, but not enough to affect her bends (which is great). Melissa said that we can expect the next week to two weeks to be tough, but after that PT should start to ease up a bit.
    The rest of the day we did some celebrating and taking care of business (oil change, dentist apt., form for Amaya's school); got ice cream, watched the Three Stooges, ate dinner at Red Robbin (thanks to Amaya's Paco & Grammy), Amaya had a root beer float, the girls bought a box of Twinkies, and then dad and Amaya toasted in real wine glasses with sparkling cider (I missed out because I fell asleep while putting Lidie to bed at seven; I'm still tired. So please forgive any grammar mistakes).
    We're all exhausted, but so relieved to be done with the "hardest part." Thank you all for your well wishes, love, support, kindness, generosity, prayers, and thoughts. Amaya only has twelve more days of kindergarten and she's hopping to go everyday. Then she can get a much needed break.