We are slowly inching our way to some more sleep...still hoping we can adjust a lot more!
We made our way north this AM to another Children's Hospital of Philadelphia campus. It was fun to see more area outside of Philadelphia! So much history and so much of the architecture is so beautiful!
We met with Isla's surgeon and one the of Nurse Practitioners, Emily. It is always so good to see them in person. It is always a blessing to get to meet with this team in person. While they are medical professionals to us, they mean so much more to us than just that. Because of this team, and them saying yes to fighting for Isla, our girl is here and growing! God is so good, and we never want to brush past the miracle that Isla is thriving right now. It is truly amazing.
Isla had a few times of being awake during the night last night, so she was quite a tired little sweetie this morning. She was shy with the team, but they were so kind to gently talk with her and include her in the appointment. Isla warmed up to Emily and loved being held by her. She has been talking about Dr. Anari and wanted to bring her stethoscope to the appointment. So, Dr. Anari asked her to check his lungs and pulse :) Isla loves to be included and this brought smiles from our girl.
We talked with Dr. Anari and Emily about how Isla is currently doing, celebrated the amazing miracle of her gaining 3lbs these last few months, (so huge! She had gone over a year and a half without any weight gain) and discussed what will be happening on Monday - VEPTR revision surgery day.
Much of the conversation feels familiar, yet there are always new things to be discussing and watching for our warrior girl. We also discussed thoughts about the future. No one can fully predict what will happen, but we keep moving forward with this plan and keep hoping and praying for miracles for our girl!
Isla will be having a right side VEPTR revision. This means they will remove her right rod, do a "V-Osteotomy again (bone fusion cutting), and will be placing a larger VEPTR rod to open up her ribs even more.
The goal, as always, is to try to open her ribs as much as possible for her little lungs.
After our appointment today we did a little adventuring in the area. The sunshine was so beautiful this AM and it was SO WARM - 85 degrees! We grabbed some lunch and had a picnic at a quiet and beautiful park. We were able to drive to the town of Doylestown and go to a gluten free bakery and CUTE toy store. Isla found her dream outfit - a butterfly fairy outfit. She held on to that outfit tight on the ride home and even held on through a nap. It was a HUGE blessing that Isla felt calm enough for some peaceful fun after her appointment today. So proud of her and very thankful we could take some time for fun with Isla today.
Once home, Isla immediately put her outfit on and started twirling! She wanted lots of snuggles and we just played games, toys, and read books with her. She gets more nervous as the evening progresses. Bedtime brings nerves for her as she is worried about what the next day might bring. Please keep praying for Isla!!
Tomorrow is a day off of any appointments. Not sure of what we will do yet. We will see how the night goes and how our sweet girl is doing. Would love to go do something fun for her if it works out.
Here is today's vlog:
(CLICK HERE) Day 3 - preoperative day with Isla's surgeon
As always, we truly are so grateful for your prayers, encouragement and support! Thank you for the sweet messages you have sent! I apologize again if I haven't been able to respond. Please know, we are so thankful!!
Justin and I are seeing God in the details of this week. There is so much that is overwhelming and difficult, yet we see his faithfulness and are humbled by his leading and timing of things. He is helping to reveal some things that we needed to know for our sweet Isla and he is so faithful to be reminding us of his sovereignty in many ways. Today was sunshine, and a sudden storm hit - so much rain, wind, lighting and thunder at once, and then a peaceful sunset soon after. It truly hit us how that is how life feels lately. When those "storms" hit, it feels so chaotic and unsettling, yet God remains steadfast to carry us through it and he is the peace before it, during it, and after it all. We talked with Dr. Anari and Emily about how Isla is currently doing, celebrated the amazing miracle of her gaining 3lbs these last few months, (so huge! She had gone over a year and a half without any weight gain) and discussed what will be happening on Monday - VEPTR revision surgery day.
Much of the conversation feels familiar, yet there are always new things to be discussing and watching for our warrior girl. We also discussed thoughts about the future. No one can fully predict what will happen, but we keep moving forward with this plan and keep hoping and praying for miracles for our girl!
Isla will be having a right side VEPTR revision. This means they will remove her right rod, do a "V-Osteotomy again (bone fusion cutting), and will be placing a larger VEPTR rod to open up her ribs even more.
The goal, as always, is to try to open her ribs as much as possible for her little lungs.
After our appointment today we did a little adventuring in the area. The sunshine was so beautiful this AM and it was SO WARM - 85 degrees! We grabbed some lunch and had a picnic at a quiet and beautiful park. We were able to drive to the town of Doylestown and go to a gluten free bakery and CUTE toy store. Isla found her dream outfit - a butterfly fairy outfit. She held on to that outfit tight on the ride home and even held on through a nap. It was a HUGE blessing that Isla felt calm enough for some peaceful fun after her appointment today. So proud of her and very thankful we could take some time for fun with Isla today.
Once home, Isla immediately put her outfit on and started twirling! She wanted lots of snuggles and we just played games, toys, and read books with her. She gets more nervous as the evening progresses. Bedtime brings nerves for her as she is worried about what the next day might bring. Please keep praying for Isla!!
Tomorrow is a day off of any appointments. Not sure of what we will do yet. We will see how the night goes and how our sweet girl is doing. Would love to go do something fun for her if it works out.
Here is today's vlog:
(CLICK HERE) Day 3 - preoperative day with Isla's surgeon
As always, we truly are so grateful for your prayers, encouragement and support! Thank you for the sweet messages you have sent! I apologize again if I haven't been able to respond. Please know, we are so thankful!!
This Bible verse came to mind today:
Hebrews 10:23
Let us hold unswervingly to the hope we profess, for he who promised is faithful.
He is not just in the details, but before, during, and after them...he is what holds it all together.
We trust in Him.
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| Isla with her surgeon, Dr. Anari! |
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| Dr. Isla! VEPTR warrior! |
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| sunshine! |
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| THANK YOU FOR PRAYING! |
My heart overflows with love for all of you
ReplyDeleteYou got this Isla