Evangeline came home from the hospital last Friday evening. Yeah! We are thrilled to have her and Momma back home again.
This is not the end of Evangeline’s healthcare issues. Over the past several months she has suffered severe regression. Although she is of toddler age she acts likes a newborn with no control of her muscles. She is unable to hold up her own head and her lack of muscle tone has made her very “floppy”. Unfortunately her condition has been essentially unchanged by all treatment options to this point in time.
We have discussed additional treatment options with the doctors. There are limited choices available but we are hopeful that something will help Evangeline. A new drug has recently been approved by the FDA and we are hoping to try it later this year.
The next milestone for Evangeline is around 2 years of age. Sometime around that time her irregular brain wave pattern should change as she grows out of the infantile spams. However, the doctors have no way of knowing or predicting how it will change. It could change for the better or worse. Even if it changes in a positive manner there is no way of knowing if Evangeline will be able to regain any of the skills she has lost.
It is easy to consider this information and see a bleak picture. We choose differently. Evangeline is here with us now and we are determined to love and care for her to the best of our ability. God has given us this blessing and we will walk this path with her trusting Him along the way.
Thank you for all your prayers for Evangeline and on our behalf. We are honored by the many offers of help and greatly appreciate the support of everyone from far and wide.