Today was Mylee's modified barrium swallow test. Unfortunately and much to our disappointment she was unsuccessful. She will be discharged from the Vital Stimulation therapy program at Phoenix Children's Hospital. We have an appointment with a new neurosurgeon on November 5th and we will have to wait to see him before any further decisions are made. We attempted to move her appointment up today, however he will be out of the office for a couple of weeks. Once we have new MRI's and find out more about what is going on with Mylee condition we will make a decision to have another surgery (depending on what is found) here in Phoenix or if we want to take her to a specialist in Chicago.
We will need all of your continued prayers as Dave and I are dealing with an aweful lot right now. We are very frustrated and scared. However, we will never give up!!
xoxoxo
2 comments:
Hi Sara! I want to let you know that I am praying for you! I have 2 boys with Chiari 1's. We have mild swallowing trouble and are managing everything at present with therapies. Stay strong and do whatever is necessary for little Mylee Grace! He will get you through this cloudy and frustrating time. May you find joy in the simple things and rejoice in the many blessings in your life!
Oh my goodness, I am so disappointed. You seem to be keeping the faith though and staying positive. Hang in there. I will continue to pray for little Mylee. I hope the visit with the Neurosurgeon goes well and you can get down to the bottom of all of this. (((HUGS)))
Ps. This is Nicholas Smith's mommy
Post a Comment