Today has been a very crazy day. Adam and I woke up early this morning and went out for a run and then came back to the beach house and Angela and I left for her neurology appointment, which was a quick flash back to reality -- but never fear we are back in the vacation groove!
Angela's six month neuro appointment was amazing. During our last visit with Dr. Melvin Angela was a different child -- one that I barely remember anymore. I remember she held her hands tight under her chin, constantly flicked her eyes and head in a self stimulating manner and constantly was in a state of failing her arms and legs. But today she is a new little girl. We walked in and Angela sat quietly in her chair and looked all around the office with her arms and legs completely still. She looked at Dr. Melvin and was scared by the stranger and sat tight next to my chest -- totally typical and appropriate. No stimming. No flailing. Wow.
The Neurologist was very impressed with her marked improvement. I had asked that she be taken off her seizure meds but we are going to give her another six months, as he would like to see her seizure free for two years before he would feel comfortable taking her off. He was impressed with her newly learned skill of standing with little assistance. She certainly uses her tone to do this -- but that's just fine with us! At our last appointment we had talked about how her felt that Angela has until age 6 to walk, and if she is not able to walk by then, then it might not happen. Today he felt that her ability to stand at age 3 puts her way ahead of his initial predication. Yippie!
We talked a little about how bad both her EEG and brain MRI look -- then we looked at her, and saw what a miracle she is. We'll follow up in six months. Totally can't wait to walk back into that office with lots of new skills and abilities. Progress is awesome!
Vacation is going great. When we got home today Aunt Jenny had arrived and the fun began! We hung out at the beach and Angela and I walked the boardwalk. Angela surprised all the beach goer's when she puked all over me while we were playing in the ocean -- so needless to say her time in the water was short and sweet.
Tonight, rest and relaxation is on the agenda. So beautiful.
1 comments:
obviously still catching up. Estelle is on anti seizure meds and I hate the phenobarbital! I've been asking our neurologist the thing about taking her off. No dice, must wait 6 month to a year seizure free. A must have book is "Children with cerebral Palsy, a Parents' Guide" edited by Elaine Garalis. It's an amazing book that explains how CP affects so many systems in the body, but also discusses the emotional piece that goes along with this condition.
Post a Comment