11/15/2025
BIG UPDATE! PRAISE TO JESUS!
The doctors at Barnes were sent to us straight from the hand of God!
We met with Gracie’s immunologist and allergist who confirmed what we have been suspecting since the beginning, but unable to find someone to listen- until today. Gracie has a condition called MCAS (mast cell activation syndrome)- this causes her mast cells to release too much histamine and tells your body that you are having random allergic reactions that are very unpredictable. This is something she has probably had since childhood and will have to live with for the rest of her life. BUT, while not widely known about, it is treatable and manageable with the right care.
That being said, after giving her a regiment of medication she was able to try drinking a little bit of broth tonight which was successful so far!
There are still some things we have to figure out with her heart (POTS) and nervous system as some of what has happened is unrelated to the MCAS, but we are on the right path!
Please continue to pray that she tolerates the foods they are trialing as this will determine when she is able to come home.
Pray that we find the right combination of medication that will treat her- everyone with this condition is different and responds differently.
Pray for her heart and mind, recovering from this experience will likely take time both mentally and physically.
We cannot thank you enough for your prayers thus far. We have seen undoubtably that there is power in the name of Jesus. Gracie is our little miracle… has been since the day she was born. She stands as an ongoing testimony of the faithfulness of God. The journey to learning to live with this will likely be difficult, but we REJOICE that God has heard our prayers and paved the way for our girl to move forward.
