Nonverbal

One of the hardest things about this journey (who am I kidding, it's all hard), is the fact that Bella is nonverbal. I constantly feel as though I'm a detective, trying to figure out what she's telling me, and what she needs.  It's especially tough when she doesn't feel good.

Lately, there's been some rough weeks of sad eyes, a fussy Bella, lo-grade fevers..but that's all I know.  Something isn't quite right, but I'm at a loss.  Is it her ears? Her stomach? Does her head hurt? Does she just not feel good? Is she dizzy? Does she have blurry vision? It can't feel good to have a brain that's constantly seizing..is that what's wrong? I don't know..and she can't tell me. Her ears don't look horrible (a little red, but not enough to treat), her stomach may be hurting (she has a c diff infection..again-ugh), and seizure meds can cause dizziness and blurred vision as a side effect.

 I'm usually pretty good at reading her cues-Bella's eyes speak volumes. Not a day goes by though, that I don't wish she could tell me "this hurts", "I don't feel good", or "I'm just tired today". It's an exhausting job, honestly, trying to figure out what she's feeling, and what could be going on, before it causes even bigger problems.

Here are two pictures from the last few days:

Typically, on days when Bella is feeling good, her eyes sparkle.  Like this:

Having a nonverbal child is one of the reasons, I hate the feeding tube, (even though I'm grateful for it at the same time).  Typically, a 3 year old can tell you when they don't feel like eating, or they can refuse to eat.  Bella has no choice.  Overnight, we hook her up to 600ml of pediasure and water, and she can't refuse to eat it or swallow. 

For now, I'll continue to play detective, try to read her cues the best I can, and keep wishing for the millionth time that she could tell me what's wrong.

In the meantime, I hope that lots of love, a bunch of snuggles, and even more kisses, at least help her feel a little better.