There has been quite a bit of activity in Jaylie and our lives since I last posted. The most eventful event being another stay at the hospital due to Jaylie's blood pressure being dangerously high and her behavior being despondent. The Dr advised these signs are very dangerous and that we would need to start lowering the ACTH does right away, which means Jaylie's chances of having the Infantile Spasms come back are a lot higher. And if the infantile Spasms come back we will have to start another set of treatments of which have additional side affects, some being long term like permanent loss of peripheral vision...
Needless-to-say this last week was more than challenging... It would firmly be placed in the low category (some days high, others low).
The good thing is Jaylie is back home again. She is almost back to her normal self though still really puffy and now taking two more medications to keep her blood pressure in check.
We are now in the process of weaning Jaylie off of the ACTH.
Thank you so much for your prayer and support, it has been much needed and much appreciated!
Nathan, Kristina and baby Jaylie