Downhill Again

Since Oksana came home she has slowly but steadily gotten stronger.  By no means was she were she was a year ago, but she did regain some function that she didn't have when she came back.  There are times when you see her getting stronger and you hear "we have no answer" over and over again that you start to think you are crazy.  Maybe this isn't such a big deal.  Maybe she is fine. 

Then a day like today comes.  It's been coming for the last week or so.  Little signs that something wasn't right.  Not even quite enough to raise a red flag.  Mood was a little off, toileting started to not be quite as on target, a tiny bit more struggle to get around, etc.  Then Monday night she could barely walk at all.  She ended up walking on her knees and crawling to get where she needed to go.  Still, I thought "Well she has good days and bad days.  This is a bad one and she will be fine soon." Yesterday I noticed that she was really struggling to keep her head up, still wasn't walking well, and had another accident.  Red flags started to go up.  Then I got a text from her teacher this morning.  She had another accident and had been struggling to move around at school recently.  That's what finally made me realize this was not getting better and was actually getting worse.  I have spent my whole afternoon calling doctors.

As of right now I am working on getting her an appointment with neurology.  I've also contacted her pediatrician to see about some more blood work.  I've contacted her GI doctor because her GI symptoms are worse too (not sure at all if it is related but it has been going on for a long time).  I think she is going to want to do a barium enema.  Oksana will not be happy.  Yesterday she had a follow up thyroid test so we are waiting on those results too. 

I guess now we just wait and see how this progresses and how long it lasts.  UGH!