grace led in life

To say these days were difficult is an understatement...
I'm posting this late...just because my focus had to be solely on Isla and our fam...
but here is a video summary of those days:

The pain is so very difficult to manage, especially with this being Isla's first VEPTR placement...it's unknown territory on how her body will respond. It is such a fine line to know how much she can handle and when it is too much...and once that line is crossed to the pain being too much, it is difficult to get back to a "middle ground" again.
It was so wonderful to see her joy return when having more relief.

Today, day 5, Isla was doing ok this AM and after nap, her pain had increased so much. She was miserable again...so she received a "rescue" med. to help, which eased her quite a bit.
She is currently laying in her crib, babbling, and playing with George and Peppa Pig, saying "awwww peppa!" :) ha!
The times of high pain are emotional for her. We see the defeat she is feeling, in her eyes.
We break...
We have not had a lot of time to process it all, but when we do, we are brought to tears. It is filled with H O P E and pain.
SHE IS SUCH A TROOPER! We are incredibly proud of her. This is so traumatic, scary, and chaotic for her little mind to process.
I couldn't hold back from crying today...it's just emotional.
Our love for Isla is so deep. She is such a precious gift.
It is just a very difficult journey...watching your baby in so much pain BREAKS you.
We have cried out to God to help her.
One day at a time...
We often think about the "process" with VEPTR...it is a long journey filled with countless surgeries.
It can feel overwhelming...so we stop and remind ourselves that we are here today...do this day... God has this...

Deuteronomy 31:8 ⁸The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Philippians 4:6-7 ⁶Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Tomorrow sounds like it may be a big day...
We will consult with Orthopedics, her incision dressings may be changed, and I'm sure more!

Please keep praying for us...we are surely feeling weary.
Home feels far away, but we know with one day at a time, it will be here soon.
Please pray for healing for Isla, wisdom for doctors, pain management for Isla, joy and peace for Zeke and Isla, great rest, and for smooth details when it is time to go home.

We appreciate you all so very much...thank you for being a part of this journey!