grace led in life

We are one week away from Isla's surgery and we are feeling all the things. 

We've had quite a few people asking about our family and Isla's medical journey. So, we wanted to put as much info as we could here on the blog to answer your questions!
First of all, Hello! We are the Sindelar Fam! Justin, Molly, Zeke, and Isla. 

We've lived in the Pacific Northwest for over 10 years now...moving from the good ol' Midwest.
J has aviation in his blood -  he is working as an aviation mechanic and is a rockstar husband and daddy. I (Molly) am a SAHM, I'm lovin' homeschooling our littles and getting to paint artwork as life allows (which is once or twice a year at this point...haha) I've faced many health challenges which feels like another full time job to try to live out. Our life has been full of work, school, and livin' the medical life. We have walked some difficult challenges so far in life and have also experienced incredible joys and we give all glory to God for doing amazing miracles and because of his great grace and mercy, helping us each and every day. He is where our hope comes from! 
We praise God for the blessing of growing our family through adoption - Justin and I consider it a huge blessing and honor to be "forever" mommy and daddy to Zeke and Isla.
Zeke is 7 - super energetic, loves adventure, he is brave, thoughtful, intelligent, creative, and incredibly loving. He brings a lot of FUN and inquisitive excitement to our days! Zeke was born with Bilateral Cleft lip, palate, and alveolar ridge. He has gone through multiple surgeries, majority of those surgeries prior to age 3. He is doing so well. He will be meeting with his medical team in March and most likely will have his next surgery in late spring/early summer. 
Isla is a strong, joyful, spunky 4 year old. Isla loves life - she has so much joy in experiencing any and all things she can. She loves getting outside for walks or riding in her bike, she has a deep connection with music, she is very independent and loves to learn by figuring out things for herself! She brings so much laughter and sunshine to our days! She is a fighter and very determined to not let anything get in her way in life... which is so good and necessary! Isla was born with Jarcho Levin Syndrome - a rare genetic disorder characterized by distinctive malformations of bones of the spinal column (vertebrae) and ribs, respiratory insufficiency, and/or other abnormalities. Her condition is severe and complex - it is a miracle that she is thriving right now. Due to this condition, Isla's lungs are half the size they should be, so she has Thoracic Insufficiency Syndrome. Isla undergoes life-saving VEPTR surgery every six months. She will be having her her 7th VEPTR surgery next week, Feb 26th. A VEPTR is a Vertical Expandable Prosthetic Titanium Rib (VEPTR)  - a curved metal rod designed for many uses: To stabilize the spine and ribs in children with severe chest wall deformities so they can breath better. This next week, Isla will have her first VEPTR revision surgery - starting the process of taking out her current rods and replacing them with bigger VEPTR rods.  Her surgeon/team will be replacing one VEPTR rod this surgery and will replace the other the next time she has surgery. Isla was born with an excessive amount of fusion in her vertebrae and ribs. Some of that fusion was cut the first time VEPTR rods were placed. Isla's body seems to be "wired" to fuse bone. So, much of her ribs/bone fusion that was cut before has fused together again "like concrete". In this next surgery, she will have to have fusion re-cut prior to this new VEPTR rod being placed. 
Like we said, Isla is such a little fighter - God continues to amaze us with Isla's strength and determination. 
*To read more history about our journey - you can browse through past blog posts

As we have prepared for this surgery coming up for Isla, it has been met with a lot of challenges. It has been a very stressful time and we appreciate all the support and encouragement.
We'd love for you to pray for Isla and our family!

Here is the itinerary of this week: 
Monday Feb 22nd is flight day
Wednesday, Feb 24th will be pre-op appointments day. This day starts at 8am and there are multiple appointments until about 2:30pm. This will be a hard day for Isla - Please pray for her! 
Friday, Feb 26th SURGERY DAY - PLEASE WEAR YOUR "Hope for Isla" shirts and share a photo with us! 

 

Please pray: 

• For a safe and uneventful trip across the country to Philly.
• For Isla's body to stay strong, healthy, and safe through surgery!
• For her surgeon and medical team to have wisdom and for the surgery and for it to be a success! 
• For Molly's health - she is still struggling with her health and is pretty weak and in pain. Not a great feeling heading into surgery as a Mama Bear! To not feel well as Mom is extremely hard. 
• Please pray for Justin as he applies for time off of work - for the approval to go smoothly! And for peace and strength. 
• Please pray for Zeke and Isla as Zeke will be staying home with family during this surgery. Due to COVID, he could not be with us again this time. This is a long time for Isla and Zeke to be apart, they are little best friends, bonded so closely, and both are struggling with this. Please pray for them to feel peace through this. Please pray for Zeke to feel comforted and for courage during this time. 
  
  

  These two truly are like PB&J...LOVE the love they have for each other!