grace led in life

At this moment we are still in Philadelphia...
A big nor'easter storm is making it's way through the east coast. Our flight was cancelled.
We are thankful to have gotten a hotel room for the night where we have been staying this week and we have a flight to Seattle booked for tomorrow evening.
Our perspective has not been on the storm though...
Here is an update on the last two days:

Thursday:
We headed to CHOP for Isla's CT and MRI. She was under anesthesia for both.
A big prayer praise - Isla was such a happy girl leading into the imaging!
She had not gotten to eat since dinner the night prior, but it wasn't bothering her.
Also...yet another tooth is popping through and that wasn't getting her to "lose it" either!
thank you for praying that she would be at peace!

little nervous sweetie

but still silly and smiley

her "stinker pie"face

It is never easy to see your little one go to sleep through anesthesia, but we were so glad to have Isla have this imaging for the doctors to continue to have more clarity of her needs.

The imaging went well! As she woke from anesthesia she let the team know how much she was "over it" haha! When she came to, she was signing "all done" over and over through tears.
She was so relieved to get the IV and cords removed and get to snuggle mama and her favorite blankie. The recovery room was a bit emotionally traumatic for her, so she was spent and very glad to get "home" to our hotel room.

this girl has JOY



sweet girl, just wanting to rest and watch brother swim after her imaging day

sweet big brother gettin' some energy out swimmin' after being patient at the doctor

Last night we got our bags all packed (thinking we were leaving today).
After we got the kiddos to bed, Justin and I spent time going through records and questions that we had for our big appointment with Dr. Campbell today.
We were praying for wisdom and help from a doctor we have heard so much about and we continued to pray for miracles for our girl.

We woke up feeling so ready for Isla's appointments today. We had a bit of nerves with the anticipation of today. This whole week of appointments has led up to this point because we had been told..."if any doctor could do anything for Isla, it would be Dr. Campbell"
Coming off of a devastating appointment for Isla, back at home a couple of months ago, left us with a lot of emotions going into today. We could also feel peace from the Lord in this journey and about what we would learn today.

Isla's appointments today, started with x-rays.
Then we got to meet and consult with Dr. Campbell.
Lastly we met with a physical therapist.


We've loved Zeke's sweet heart and inquisitive mind as we attend these appointments each day...he loves to take in all the details! These were really fun wheels at the Orthopaedic Center

Waiting to meet Dr. Campbell!

Seriously...even on the hard days...there will be smiles <3

Isla was in good spirits this AM. So thankful after having such a big week. She is such a brave girl!

It was truly surreal meeting Dr. Campbell. We have read and heard such good things about him. Other colleges of Dr. Campbell's that we have seen this week, talk so highly of him.
Justin and I laugh because we felt like we were meeting a celebrity! ha!
He was so down to earth. Much like the other doctors at CHOP, he was humble but confident...so good! Dr. Campbell was an engineer prior to becoming an orthopedic doctor - brilliant mind!
He was so kind to Isla. We could tell he had taken the time to read through her records and study her imaging.
Dr. Campbell laid out what he saw Isla was facing and did not hesitate to share his ideas in how he could help her. (YES!) He explained things very well and was very detailed in describing the procedures he would perform through surgery, in hopes of Isla's ribs expanding through VEPTR implants and allowing more growth of her lungs.
He was very clear that they cannot guarantee a specific outcome through these surgeries, but to not try, is not an option. Not trying will take her life.
As parents, the idea of losing your child hurts so badly. To think of not trying to help Isla, was not an option for us. We clearly see how God led us to CHOP and Dr. Campbell and with talking with him, we feel HOPE. We do not know exactly what the future will hold, but we have HOPE. Isla has HOPE. We feel this is a miracle!
Praise the LORD!
The VEPTR is a Vertical Expandable Prosthetic Titanium Rod.
click here to watch a video that explains the VEPTR well and shares Isla's team of doctors.
video of CHOP and the VEPTR

Justin and I will be taking some time to process everything we have learned and pray, but most likely, we will be moving ahead with this for our sweet girl.
If we decide this is the best option for Isla, she will most likely be having two major surgeries within the next 5 months. These surgeries are not simple nor easy.
Please keep praying for us to have wisdom in decisions and for our girl...
Isla needs to remain healthy, to keep gaining weight, to keep progressing in development.
She needs a big team of prayer warriors and loved ones cheering her on in this journey.
We are thanking God for our girl's fierce determination. The doctors were all saying that is so good to have, in the journey she is on!
We are so very grateful to all of YOU!
Thank you for praying, for texts, emails, messages, meals, and more...
We feel speechless and just so full of thankfulness to have gotten to come to Philadelphia to meet this team of doctors. There is very big journey ahead...we continue to ask for your prayers!





snuggled in through the big Nor'easter! Praising the Lord for this week for Isla