Then it was off to the neurologist visit which was less than impressive. I left more confused and with more questions than when the visit began. He confirmed that her trunk is low tone and her arms/legs are high tone. However, he didn't want to do an MRI to check for reasons behind the tone change. He also seemed to not believe me when I explained the "startle" reflex that she has maintained even though she is 6 months old. He clapped his hands really loudly and assuming that since she didn't startle he says she is fine. I tried to explain that it wasn't based on sound but more on movement and it was often just sporadic spasticity of her muscles. Basically, he said he would order more genetic testing but at this point he couldn't foresee being able to help us. He gave me his card and said to call if we had more concerns or felt she was seizuring. Huh???!!! So basically, we still know nothing. "Nice"! (I'm being sarcastic you just can't hear it in my voice inflection through typed words).
Anyways, we go for a 6 month check up and shots on Friday. I plan to ask many questions on this day. Including the fact I have been in constant contact with her GI doc and nurses due to her recent refusal to eat. She finally took some bottles today but she still is well below her normal intake and is having weird poops. (Okay so maybe that is TMI but this blog is to keep you informed and you can't say I didn't tell you everything :)
More to come later---
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