The end of the journey...

Well at least the end of this first lengthening journey. JP had another follow up doctors appointment today and his X-rays showed that his leg and regenerated bone are healing nicely. So well that he will be having his fixator removed next Friday - May 22 (also Keith's and mine 11th wedding anniversary).

It's so hard to believe this thing is coming off! Some days it feels like we just got it on and others it feels like he was born with it on. It's a funny wave of emotions I'm having right now. 

Proud- I'm so proud that he has done so well with it. While it was defintley rough at times, I think for 3 he handled this well.

Joy- that my baby is on his way to having his legs a little closer to even. That we picked an amazing surgeon who has encouraged us all the way and celebrated each of our little victories with us.

Relief....no more altered clothes, no more worrying about pin site infections (we only had 1 yay!!), no more having to deal with stares and glances and to be frank explaining over and over what the ex fix is and why he has it on.

And disbelief... That we have survived his first lengthening! That his first lengthening is pretty much over! When I think about when we first learned about his birth defect and how overwhelming this all seemed or when we moved up this surgery and the stress and anxiety that I was feeling or the day and night to follow post surgery- this day seemed like a dream that would never come true. And now surgery and procedure #2 are "in the books"!

The last 4 months were anything but easy- there has been tears, frustrations, doubts, and struggles for all of us, but JP has shown resilience and strength. He has showed us that....well, he has got this!

So next week his "superman leg" will come off. He will go under and have outpatient surgery to remove the external fixator and wake up with a straight long leg cast (aka above his knee ). It will be interesting it see how he handles this next transition. JP has had a cast before, but he was 18 mos old and it was different surgery/experience (it was when he has his tibia straighten and his ankle reconstruction).

We have been talking to him and preparing him on what will happen when he wakes up, but I'm not sure he grasps it.

JP will be in a cast for two weeks and then we will go back for  X-rays and a check up. At that time he'll be molded for his new AFO (another foot on foot articulating one- woohoo!!) and then depending on how things look, he will go into an air cast or back into a hard cast for 2 more weeks / until his new orthotic is done. It looks like the AFO will have a 5cm difference to cover.

So here we are heading into the end....well of lengthening #1. He will still have lots of PT ahead, but we are finishing this part of the journey and should have a few years "off". So please keep our Superhero and his big brother in your thoughts and prayers as we tackle a new transition...our latest new normal.