Tuesday, May 22, 2007

Day 20: Specifics?........Please?

Thank you to everyone for your kind words, phone calls, babysitting offers.....I can't say enough how much those little things are appreciated.


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....


Awesome Mom said...

Yikes! The not knowing really has to be hard. At least Evan's issues are fairly straight forward. Hopefully you will get some sort of answer sometime soon.

JeniBeans said...

Let us know....still praying over here. =)

Denna said...

Praying for you guys. I hope things get better soon for you.
Love ya,

Mary Eileen said...

I think sometimes it is just the nature of having seizures and what it does to the brain that throws off the balance of good and bad days--especially when the labs come back okay. If something was screwy there at "least" you would have some explanation. My son has intractable epilepsy and we have been riding this roller coaster for 22 years. His first seizure was at 35 months and because of the lack of oxygen during the initial grand mal seizures he was left with significant brain damage- until that time he was a typical almost 3 year old. Much of what you describe with your daughter I can totally relate to--I have lived it. When I first found your blog last year I was drawn to it because of our common ground--while you have a few more children than I, I too was a young mom --of 4 children--born in 4 years--and dealing with all of my son's issues while trying to be a good mom and wife and holding everything together. I have had periods with my son where he is really off, can't talk, can't eat or drink on his own-much of what you described with your daughter. And then the episode passes and he is back to his "normal". It is when we see them get to a place we haven't seen before that gets worrisome because you don't know if you are up against a life altering change or just a new kind of bad day. Praying that this time passes and your daughter is feeling more like herself. Hang in there you do a great job!!