grace led in life

Thank you greatly for praying for our sweet Isla and our fam. 
As usual...surgery and start of recovery have been a whirlwind. We've been focused on Isla and her needs. 

Our sweet girl really struggled at the hospital but her surgery went according to plan and she was showing enough signs of good recovery to be discharged today! 
Isla's expansion was successful. Her surgeon, Dr. Anari, repeatedly says it is not easy to get an adjustment on Isla's rods. Like we have mentioned, her bones are like concrete and her genetics are wired to fuse those bones. Dr. Anari has shared that he has to apply the highest amount of pressure to get her adjustment and it always shocks him with how much strength it takes. With that said, we are so very grateful that this was a success! Every adjustment is more opportunity to give room for her lungs to grow. (for those that do not know, Isla's lungs are half the size they should be). Isla has had vocal cord injuries during past surgeries causing issues with eating/drinking/aspirating after surgery and due to her weight hitting a plateau this last year, we had decided it was best to try the NG tube (temporary feeding tube) during this hospital stay, even with the stay being only one night this time. 
We are grateful for that decision. Isla did not like it at all, yet the ability to get her meds in her was a lot easier that way. Once it was decided that Isla could be discharged today, the NG tube was able to come out. 
Isla was able to maintain good oxygen after this expansion, which is so wonderful! 
Isla was miserable, yet she was determined. Per Isla style, once she decided she wanted to move - SHE MOVED :) We joke that she took J and I for a walk instead of the other way around! 
She definitely wore herself out, yet we love the determined spirit she has in her! She needs to have that fighting will! Little Champion!
We have already started the discussions of next surgery for Isla (approx 6-7 months away). It will be a more intense surgery again, like her last one (Feb 2021). This next surgery will be a revision surgery - removing her current rod, cutting bone fusion, and adding a larger VETPR rod. It is difficult to discuss this already, yet we know how fast time time will go before next surgery. 
While yesterday's surgery was a "less intense" surgery out of her journey of surgeries, it still is so very hard on her in all ways. She really had heightened fears. Our sweet girl has been through so much. 
There is so much that is bittersweet about all this. 
It is so incredibly hard to see Isla in pain, to have to do surgery so often, for her to not get a choice about all this, but have to go through it. Truly heartbreaking.
At the same time...we are incredibly grateful for this team here at CHOP. For doctors saying yes to fight for Isla's life when others said no. We have told the doctors, nurses, and staff that they are family to us. 
This journey for Isla is one that is so vulnerable. She is incredibly courageous and brave. We are so proud of her. She is incredibly strong!

We thank God for another successful surgery and we do not take for granted all the miracles upon miracles that have happened. We praise him and continue to lean on him for strength and wisdom. 
The growth God has done in us and the perspective that he reveals to us is truly a gift. We know the joy we continue to hold comes from him. Our circumstances are a struggle, yet the joy He gives is truly encouraging.

We cannot wait to get our sweet girl home. We cannot wait to see our brave Zeke! 
We cannot wait to help Isla get through recovery. School starts soon - Fall is near! We hope to get to have some fun together in these months ahead before next surgery. 

Thank you, again, for all the prayers - Love, Justin, Molly, Zeke, and Isla
Please continue to pray for Isla to heal so well with no infections and for God to strengthen her body for next surgery. 
(CLICK HERE) - VIDEO of Isla's 8th VEPTR surgery: surgery day Aug 27 and start of recovery Aug 28, 2021