The Latest

She did not get weaned off bp meds any more today. Please pray that her bp will cooperate so that they can wean her some more off of it. Please continue to pray that she will recover from all of this infection that she has been fighting. We are hoping that the muscle spasms that are over her whole body are from electrolyte and vitamin defs. They said it could be. From what I read there are several of them that can cause it. I know she probably has a mito problem and we will learn to deal with that but I really hate seeing her have to go through these so I hope they will cease and that she will begin to get stronger and get her upper body strength back. She still cannot support her head. She has gotten some blisters and chafing from laying on her one side. Therapists started work again yesterday but will be gone on weekend. Speech therapist came to make sure she did not have any swallowing problems. They did this by giving bites of ice cream and applesauce. They also gave her some water. They listened to her throat while she swallowed to make sure she did not aspirate. She passed the test. After they finished she asked for ice cream. This is either because she is hungry for real food or that her stomach is feeling some better than before we came. She always loved ice cream- what kid doesn't- but would not even eat that at home before we came. They said since tube is in intestine and stomach has shrunk to go slow because she may have nausea at first. Please pray that goes well.