grace led in life

Big journey ahead this week...

We leave for Philadelphia tomorrow through Friday for Isla to be seen at Children's Hospital of Philadelphia.

It is crazy how much happens in a short amount of time...

We had no idea, three months ago, that we would be pursuing medical care for our sweet girl, literally across the country. At times it has been hard to wait for these appointments for our girl, but it also is incredible how quickly it all came together for us to consult at CHOP.
The heart of man plans his way, but the LORD establishes his steps - Proverbs 16:9

We are so thankful for this opportunity to seek a second opinion, and hopefully, great help and care, for our Isla. 

 

Isla's main appointments at CHOP this week will be:

• seeing the pulmonary team - due to Isla's lungs being so small and constricted from her ribs all being fused

• an anesthesia consult - Isla will be under anesthesia for imaging this week

• general thoracic surgery team - to consult about Isla's thoracic needs (fused, deformed, missing, and curved vertebrae and fused ribs)

• Isla will be under anesthesia for a CT and MRI - they will be doing a "dynamic lung function MRI" - to watch how much her lungs are functioning at this point. They will also see her vertebrae in more detail to look closely at her needs.

• meeting with Dr. Campbell - founder of the Center for Thoracic Insufficiency Syndrome, he is an orthopaedic doctor who has also developed and created devices that have saved lives for many children who have similar needs to Isla.

 

We are so very grateful for all the support and encouragement as we keep stepping forward in this journey for our precious girl!

From house/pet sitting,  food, encouraging notes/messages, thoughtful gifts for the kids to travel with, etc...we could not say thank you enough! It is incredible to feel this support during a really difficult time.

One of our biggest encouragements is knowing you are praying.

We need prayer and are praising the Lord for the many people that are devoting Isla and our family to the Lord in prayer. It is the greatest thing we could be doing and we really feel loved through it! God is incredibly faithful. We continue to see his faithfulness daily. We have been shown which way to go, and we move ahead with thankful hearts for his leading. We surely struggle with fear and feeling the stress of unknowns. Our days are up and down, but we continue to hope in the one thing that is constant...God's unconditional love for us.

We have been having so much fun with Isla - sticking close to home to keep her healthy and continue bonding. We are so thankful for each day and the amazing growth we see for her and us as a family.