grace led in life

The time has come for Isla's 9th VEPTR surgery

For those of you that are new to Isla's journey, here is a bit of info about her condition. 
Our sweet, spunky, and strong Isla faces a rare condition. 💙Isla was diagnosed with Jarcho Levin Syndrome - Spondylothoracic Dysostosis and Thoracic insufficiency Syndrome. Each child that has Thoracic Insufficiency Syndrome is a very unique case. Her specific condition is very severe and complex. Isla was born with missing, fused, and deformed spinal vertebrae and ribs. She has severe hyper lordosis (a severe/sharp forward curve in her spine). Her condition affects her cervical through thoracic spinal vertebrae and her ribs. Since birth, her lungs are half the size they should be. Without medical intervention, her ribcage would not grow any bigger. Thus, her lungs would not be able to sustain life for her. Isla has two VEPTR rods - Vertical Expandable Prosthetic Titanium Rib. These VEPTR rods are helping to hold her ribcage open. They force a great deal of pressure on her ribcage to allow for growth. Isla's VEPTR surgeries are approximately every six months. We are hoping and praying that her lungs will grow...

We are days away from leaving for Philadelphia. 
We will be flying out April 12th and Isla will have a few days of preoperative doctor visits, consults, x-rays, bloodwork, and Covid testing. Surgery day is April 18th. We will be meeting with all of Isla's medical team at Children's Hospital of Philadelphia.
We were able to meet with her Pulmonologist from CHOP already via tele-health. It was very good to connect with him. Isla is definitely showing signs that it is time for a revision surgery. It is so hard to see these "signs" revealing that it is time for surgery once again, yet we are SO thankful she is growing! Isla is definitely having pain which affects so many things and triggers anxiety, anger, sadness, and fear for her. We can tell that she is becoming more aware of these signs as well. As we have mentioned before, just because doing this is not "new" anymore, it never gets easier. We're so proud of Isla. There is still so much that she does not fully understand. We are trying our best to help her feel safe and supported through it all. She truly is so strong and courageous. Seeing the pain, anxiety, fear, anger and sadness that Isla feels is heartbreaking. They are feelings you just want to protect your child from, right? We want our kids to feel care-free and not have worries. Our greatest desire in helping Isla, is to keep taking all these things to Jesus and to hold to the HOPE we have in him. We want to support her and acknowledge just how hard this all is. It is a lot for us to process as adults, imagine how much harder it is for a little one to understand. God continues to grow our perspective through each day. As much as we are helping Isla as she processes, God is teaching us so much through her, too. Isla has frequently been asking, "We pray, Mama?" This has been the sweetest thing! She usually prays thanking the Lord for EVERYTHING she can think of that has been happening surrounding that moment. God has been continually reminding me how he is present, working, and reminding us of all he has done. We do not want to not lose sight of all he is doing. Isla's prayers, that are filled with thankfulness, remind us to go to the Lord with a grateful heart, even when the day feels so heavy. Doing this brings so much JOY. I praise God, that although Isla doesn't fully understand, he is creating a joy in her heart that brings her some comfort through such hard things...a comfort and peace that can only come from Jesus. We go to the Lord with our grief, sadness, and anger...and thankfulness. Praise him that he produces joy even through suffering. We are never alone and never without hope. He has done great things...we have seen miracles in our lives! 
Romans 5:3-5 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us

On a side note. My (Molly's) health has really been struggling, too. It has been up and down for so long, but in the last few months, it has taken a really rough turn and the symptoms are really difficult. It has been a VERY busy season of so many doctor appointments not just for Isla and Zeke with their medical teams, but with all my appointments as well. We are exhausted and honestly, often feel discouraged. I'm grateful for my kind doctors and their efforts to figure out all that is going on. We do not have full answers yet. I'm waiting on more appointments with specialists. We are praying for clarity on what is happening and wisdom on how to help. This surely adds to the stress of this time. It has been stressful for all of us and takes a toll for sure.

 We are incredibly grateful for a sweet community of people that have been surrounding us with support. We have a group from our church that have gone out of their way to support our family. This journey we have been on has been so heavy and hard. It has been the sweetest blessing to have these people wanting to carry our burdens with us. We need it and could not be more thankful.
Thank you to everyone that has reached out and checked in... I'm so sorry if I haven't returned your messages. Please know we are so grateful!

We truly ask for you to pray. Our "prayer request" needs feel great, but we truly believe that those prayers are a gift and important.
Please pray for Isla - for her to stay healthy and strong for this surgery.
For this VEPTR revision surgery to be safe and successful and for recovery to go smoothly. 
The last time she had a revision surgery she had struggled with oxygen, developed an ileus (GI tract and urinary tract stopped functioning for days) and her vocal cord was injured again. This caused for a very difficult start to recovery and longer hospital stay. The surgery is already very difficult and painful - we are praying for Isla to not have complications. 
Please pray for Molly's body to be strong - for strength, endurance, and pain relief for each day...that I would remember all that God has done and cling to peace and joy from the Lord. 
Justin's prayer request: for endurance to be a strong father and husband during this trip/surgery. To keep looking to the Lord in all things. 
for Zeke - our buddy will be with family, here in WA - we are sad to be apart, but know it is best. Zeke asks for prayer to help him not be afraid. He loves reciting Isaiah 41:10. 
We ask for prayer overall - for a safe and smooth travel day and to all stay healthy.

As the days progress over these next few weeks, we will share updates and specific prayer requests as we can. Please follow our blog for updates. We cannot thank you enough for the support, love, encouragement, and prayers. WE TRULY NEED IT...THANK YOU. 

Thank you, so much, to those that ordered shirts in the new campaign for Isla! 
It has been so sweet to see you wearing them! Isla definitely has been noticing and calls them "Isla shirts" she gets very excited to see people "matching" with her :) 
I've heard from quite a few people that they never saw we had launched another campaign...sorry friends! If you still want to order a shirt, you certainly can! They may not arrive by the date of this surgery for Isla, but we'd love to have you join us in supporting Isla in this way! 
Just to clarify, there are 2 design options - the link below will take you to our "storefront" where you can see both designs. Either design can still be ordered. 
(CLICK HERE) HOPE for Isla shirt campaign

Please wear and share! Please wear your shirt on surgery day (Monday, April 18) in support of Isla and as a reminder to pray for her!
If you are able, please send us a photo of you wearing your shirt!
You can post about it on social media (tag me! FB: Molly 'Miller' Sindelar or IG: @mollybsindelar and hashtag #hopeforisla) or private message me
email: sindelarfamilyadoption@outlook.com