We went to see the neurologist today. My pediatrician thought it was the best place to start for trying to find out why she still looks like a drunken sailor when she walks. She has always been low tone. She did not have the opportunity to have tummy time until she was 9 months old because of her colostomy bag.
Neuro said he strongly feels her unsteady gait is caused by her very low tone and her feet are totally flat with no arch at all. He thinks as she gets bigger and stronger she will get better. We are going to increase her physical therapy.. That said we are getting blood work done for creatin serum and he would like a repeat MRI of her brain. She had one almost two years ago when they suspected hydrocephelus. They will look at the specific part of her brain related to balanace and coordination more closely since we didn't know to look there before.
I am hoping to have them do an ABR while she is under and get a solid answer on her hearing. The neuro is willing to work with the other doctor. I meet with my pediatrician thursday to discuss it all and coordinate the doctors if possible.
I am encouraged to know the Neorologist believes it is nothing neurological. He was impressed with how well she does recover from almost falling. He said if she is able to catch herself and stop she is using her muscles and it will continue to improve.
Cognitively, she is ahead of the game. They very impresses with how much she knows and I think they didn't believe me at first when I told them. They tested her a little and she showed them she knows her letters, numbers, colors and shapes. She can follow complex directions and according to them "one of the most outgoing and social kids they have ever seen"
She did not like when the doctor checked her reflexes but as soon as he left the room she had a blast checking her own reflexes and mine.