Today was pre-op day. Isla was quite nervous heading to her appointments. She is understanding more and yet not understanding the "why". We are so proud of her for continuing to ask so many questions with us and are grateful that she trusts us to keep confirming her questions. BRAVE GIRL.
She was both exited to see Dr. Anari (her surgeon) and really terrified, too.
We tried to set up the day the best we could to support her in all ways.
Isla loves to "match" or be alike and she loves to play and act a scenario, so we brought her a Dr. Isla jacket and her doctor kit. She made sure to take all of our vitals and even took Dr. Anari's as well.
Dr. Anari is so personable and gets on Isla's level to connect with her. We are so grateful for how caring and kind he is!
Isla got through her appointments, and we all were so glad to get settled into our new hotel/room through this afternoon.
We spent the day doing the things Isla loves - dress up, princess everything, yummy food, singing songs, and being close together.
She was pretty nervous for bedtime, knowing tomorrow morning we check in at 9:30am for surgery.
We were able to get her to sleep! Please pray that Isla sleeps deeply through the night. 3 hours the night before was surely not enough for her body and mind.
(CLICK HERE) video of pre-op day
Tomorrow, Isla surgery day lands on Rare Disease Day.... I'm going to "copy and paste" info about Rare Disease Day below, from a past blogpost...
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Oh, how thankful we are for our "rare" girl!
She is FEARFULLY and WONDERFULLY made!
PSALM 139:14
World Rare Disease Day is an annual observance to raise awareness for 300 million people affected by rare diseases and disorders globally.
Sharing a bit about Isla's story to raise awareness 💙
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Our sweet, spunky, and strong Isla faces a rare condition. 💙
Isla has been diagnosed with Jarcho Levin Syndrome - Spondylothoracic Dysostosis and Thoracic insufficiency Syndrome. These are somewhat umbrella terms. Each child that has Thoracic Insufficiency Syndrome is a very unique case. Her specific condition is very severe and complex.
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Isla was born with missing, fused, and deformed spinal vertebrae and ribs. She has severe hyper lordosis. 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.
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| Baby Isla ❤ just 2 months in our arms |
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| CT imaging of Isla's vertebrae and ribs |
We were told by an Orthopedic doctor at a Children's Hospital, that "Isla's condition is so rare and complex that no doctor would touch her...if they did, it would be heroic and not worth the hard medical journey. She will maybe live to age 3." We were heartbroken but would not stop fighting for Isla. 🙏🏻💗
We refused to believe that no one would try to help.
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We feel so thankful that God led us to a team that said yes. Isla was able to have a diagnosis for some of her needs and a medical team at CHOP saying "yes" to fighting for her life. We are so very thankful for Dr. Campbell. He is the creator of the VEPTR rods (These are the titanium rods holding Isla's ribcage open, hoping to keep making room for Isla's lungs as she grows). Dr. Campbell's words were: "to do nothing is not an option." Those words were a miracle to hear.💙 He said yes to fighting for Isla. We are grateful for Dr. Anari continuing on in Isla's care in the same way...he is an incredible surgeon and so kind. Moving forward, we do not know what the future holds. But, we will always fight for Isla. 💗💪🏻🙏🏻
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| Isla with Dr. Anari! |
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| Isla with Dr. Anari today! 02/28/2024 |
We are so grateful for every day with our sweet girl!
God has given Isla a personality filled with determination, joy, fight, and adventure...she is a miracle. Isla is 7 and thriving... including tomorrow's surgery, she will have had 13 total surgeries so far, 12 being VEPTR surgeries.
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We praise God that we get to be Isla's family. God has used her to change our hearts in such a big way.
💙 WE LOVE YOU, ISLA! 💙
So thankful for the blessing of meeting and learning more about some amazing warriors facing rare diseases these past years...they and their families are incredible and have touched our hearts. These rare warriors are our heroes!
Here in the U.S. we raise awareness by "showing our stripes" like a zebra! Stripes are to zebras what fingerprints are to humans. The striping pattern is unique to each zebra!
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So very thankful for our rare warrior!
Please keep praying for Isla!
