Monday, December 12, 2005

Weekend Recipe

I'm annoyed.

Michaela's doing much better. At least, she's not in a stupor. She's actually talking in sentences! That's good, right? Of course! So why am I so annoyed?

Because I never know what to expect from this disease. One minute, I think I have to tube-feed her, the next she's grabbing food and shoving it in her mouth! OK, maybe it's not one minute to the next, but it can be one morning to the afternoon! And so I don't want to be without the things I need that I have to rent from the home-health company, for those times when she can't eat. That's no simple process. I have to get a prescription from the Chief, then call the home health agency and get the paperwork going, and then they have to drive it up to me 'cuz they're an hour-and-a-half away. Then if she's doing better a couple days after that, I want to send it back so I don't have to pay any more co-pays on equipment I'm not using. VERY FRUSTRATING.

Back in February, we were told that we could have lost her because she was starving to death. We really didn't know that it was that severe. I only knew that I couldn't seem to get her to eat enough of the special diet food that I knew she needed to have. I just figured she was being stubborn because the diet wasn't always the most palatable thing out there. Come to find out, she was suffering from apraxia in her throat. Which means she couldn't eat even if she wanted to. And even though I generally am not an alarmist, this situation freaks me out to the point where I try to act as soon as possible. I mean, she doesn't have the g-tube for kicks. If she can't eat and I have to feed her via the tube, then she has to eat every 2 hours, each feeding taking approximately 20 minutes. NO. I'm sorry. That's crazy--she's not my only kid! So the pump feeds her at night, and I don't have to feed her barely at all during the day. If she wants something and I feel she won't aspirate her food, then I can give it to her--it's a bonus. No pressure.

Undoubtedly, I'm grateful that her apraxia is not a permenant condition. If she's doing well neurologically, then she can usually eat too. This is nothing but good news. I'm not complaining about this, but the continuous "up and down" complicates things for me. I have to constantly be making judgment calls. That's why all the fuss. Sounds trivial, maybe, but I just can't stand being seen as a hypochondriac mother. "Yeah she calls and needs this and that, but she just freaks out over nothing and the kid is fine the next day." NOPE. Sorry. Wrong number. I'm not like that and I can't stand ever giving that impression. SOOOOOO annoying.


But the weekend was good! Renee's baby shower was this past Saturday. A much needed respite for me. Always good to get together with the ladies and eat and chat and spoil a future mom. Tres enjoyable.

Then she and Dave came over that night to play some Rook. It was me and Dave against her and Chris. We swamped them. It was fun. Another good stress reliever. Except for the fact that the guys were extremely, um, shall we say "gassy"? The room was very likely green. Then they broke out the warm Dr. Pepper---bad news bears. The burping contest was pretty impressive, however. Renee and I just laughed and laughed ;)

Here's a picture of Dave and Chris at Jeremy and Nicky's wedding. Chris is the shorter guy propped up by Dave on his left. Photo courtesy of Jonathan's website (he's the guy on Dave's left):

And then on Sunday the announcement was made about Michaela's condition and how serious it is. This is a good thing. When people know, they understand more. And in my church, when people know, they pray. This is a very good thing. Cuz when it all comes down to it, I know man can't fix her. But God can. And I'm looking forward to the day when He does.

Overall, a very good weekend, with a dash of stress.

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