Boo's day today was similar to yesterday. I tube fed her this morning, but she was able to eat a McDonald's parfait for lunch. Then she ate dinner like normal.
She barely talked this morning. Had a hard time walking. Wouldn't (couldn't?) go to the bathroom until late afternoon. Mainly just sat and drooled. Until mid-afternoon. Then she snapped out of the funk, talked fairly normal, and ran around being silly. Chris doesn't think this evening was as good as last evening, but it was still night and day from the mornings.
I don't know what to make of it.
Her left eye still has the blood spot, her hands mottled up a bit this morning, and instead of tilting backwards, she tilted sideways. I brought her to her appointment with the good pediatrician doctor, and he really didn't have much to say about it. Said he would call Chief. Since then, I haven't heard a thing. They're probably playing phone tag.
I had her lab work done. I trust I'll get an email tomorrow letting me know the results. Normally, the results are perfectly fine. No problems there. I guess that's a good thing.
But then, what is this? What's going on with her? I would be lying if I said I would be glad if the results came back fine. I would like to see a discrepency for once. A reason for the roller-coaster ride that is her daily life right now. If the labs are good, then what's the problem? Why is she so varied neurologically, if there's nothing askew?
Chief usually just chalks it up to "epileptic encephalopathy." Just her condition. Just the way it is.
OK. I can see where he's coming from. I understand why he tells me that, and why that's all he can generally offer me for an explanation. I mean, sheesh, he's a doctor---not God. He doesn't have to know everything, or have all the answers. But honestly, I like answers. I really do. Specific answers, specifically. I've come a long way as far as not having to know everything, honestly, I have. But this just irritates me. It's so frustrating. To see your kid go through 2 totally opposite ends of the spectrum---for example: in consciousness, they have a scale of 1-15. 1 means you're a total comatose vegetable, and 15 means you're normal. If you're reading this, you're a 15 or so. Michaela will fly from, let's just say, 6 to 11, in the span of hours. HOURS. And that has been happening on a DAILY basis. To see that, and hear that it's just "par for the course," is soooo hard to take in. It just makes MORE sense that something's not right.
But I haven't changed her meds, her food, her schedule, her toothpaste even! And yet she STILL vascillates between two extremes. What in the world is going on?
OK. Here's the point: WHAT am I doing wrong here?
She lives with me, I take care of her. Why is my child falling off the cliff one moment, and being normal enough to warrant punishment the next?
Can she not handle Crest toothpaste? Is the laundry detergent soaking into her skin and messing her up? Am I talking too loud? Is it sugar? Milk? The water? The dog? The weather?
Of course my first impression is the meds. But the labs come back fine!
Do you see my problem here?
We'll see if I get any answers tomorrow....