Something is going on

I remember taking this picture back in January.  Hannah was sick, just not feeling well.  If I had taken a picture of her today, it would look very much the same as this one.

It started a couple of months ago.  We noticed she wasn’t herself, but it was not very noticeable.   Then a week before our trip to Florida, we noticed that she was really “under the weather.”   Now that we have returned, she still is not herself, but she is getting worse.

She has stopped crawling.  She has developed significant ataxia (balance problems) to the point where she can’t even sit up unassisted without falling over.  Worst of all, her movement disorder is the worst we have ever seen it, even with the increase in Klonopin.

She doesn’t want to play.  She only wants to be held and cuddled.  On the rare occasion, she will sit and watch her Wiggles on the iPad, but even then you can see her struggle (and sometimes fail) with her balance.

Something is going on.

We had one of our favorite backup nurses who we haven’t seen in a few months today.   She commented on how much different Hannah’s disposition is between the last time she saw her and today.  “She is like a totally different child.”  And not in a good way.  She reminded us that just since her last visit in early March, Hannah was crawling from one side of the room to another and that she “had to chase her around the room.”

Her trach gook has been clear this entire time up until tonight when it started getting cloudy.

So what is causing this rapid deterioration?

An infection?   Progression of the disease (but this fast?)?  Could the increase in Klonopin over the past couple of months be causing these ataxia problems (which is a possibility)?  Combination of any of the above?

We got an emergency appointment with her neuro for Tuesday, but I think we may even check in with her pediatrician on Monday.   Something just isn’t right, and I just don’t know what it is.