A week of Celebration

This week has been pretty exciting for our family. Where to start??

Aiden... He lost his first tooth and he was more then excited! He feels like everyone he's ever known has lost a tooth but him (not true, but it seems that way when your 6). He couldn't believe it when it happen and loves his new smile.

Thursday night, he and I got to have a date night too.Aiden received tickets to the Blue Rocks game, they are  a minor league baseball team in DE, because he read 10 books on his own in March. We hung out with one of his friends from his class and they had so much fun.

And I loved the one on one time with my eldest boy!

Then there's JP

On Friday, he had his external fixator removed! He was in his ex-fix for a day shy of 4 mos. Although it was challenging and hard, I feel like it went so fast at the same time. He really did amazing, even when it was a struggle.

The removal process is a minor surgery, where they do put them under. They gave him some extra medicine to help him wake up easier this time and it worked!! He did so good coming out of anesthesia this time-no thrashing, no screaming, no throwing up.  We were allowed to sit with him while he woke up.

JP is in a cast for the next few weeks while his leg and wounds (the pins and wires from his ex-fix) heal. He requested a red cast, which ended up being red and blue like a certain Superhero...Superman. Our little guy loves it, plus his Monkey got a matching one! 

This surgery only held him down for the hours he was asleep. Within an hour of being home, he was trying to walk already- even though he was still loopy and medicated and all.

I thought it would take a few days to go back to "normal" as some kids are afraid to walk on their cast right away. He never ceases to amaze us- nothing holds him down and we love it!!

So our Superhero is doing amazing- thanks for all the well wishes and prayers!

Also Friday, Keith and I were married for 11 years!! Although we didn't really celebrate outside of breakfast at the hospital and watching our boy conquer another milestone in his journey. 

We feel so blessed! We have had our share of trials, but also triumphs. Through it all, we never stop loving and supporting each other! Even though this year we haven't really gotten to celebrate how our little family started, we are looking to many more years and decades together!

And last but not least...we have another niece!  My sister had her little girl on May 24th. We love Oliva Rose and she's just the cutest! 

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.