*Rush* Neuro appointment

Last night, Daddy and I had one of our reality discussions about Hannah that we have to have but just sucks that we have to have.  We have both seen the deterioration in her condition, especially over the past month.  How much of it is chalked up to being sick with trachiitis and strep plus being on the amoxicillin and cipro for the past two weeks plays into this is still a question, however.

When I came down this morning, Hannah’s nurse commented to me that she thinks that Hannah’s movement disorder has gotten much worse just in the past few days.   Today is especially worrisome.  She doesn’t crawl more than a foot or so, and she has to really want something for her to even go that foot.  She will slowly go one step, go back to her W sit to balance herself, and then she will try for another foot.

For the first time, she didn’t crawl to me this morning.  She just cried until I picked her up.  I was only three feet away.

Her hands and face are constantly moving now.  She has gone back to holding her hands together so that they don’t keep moving.  I wouldn’t say it is as bad as it first was in the hospital this summer, but on a scale of 1 to 10, 10 being severe, I would say we went from a 3 to a 7 in just a few weeks.

Hannah’s next neuro appointment wasn’t until February 18th.  I called this afternoon, and the earliest Dr. Brown can see her is next Tuesday.   Today is the last day of the cipro, and we only have two more days of the amoxicillin.  She will be antiobiotic-free for a few days before that appointment.

Playing with her toys and at her desk is what Hannah does every single day.  She loves to play.  Not right now.

It is so hard to see her body working so hard against her that all she wants to do is be held.