Sunday, January 29, 2006

No, I Don't Have Dementia and I Haven't Forgotten About My Blog, BUT

I AM older now. The 27th was my birthday.

For those of you who know me or have picked through my blog here, I'm sure you can figure out how old I am. It's not something I want to talk about. It's not a "cool age" like 16, 18, or 25 (when you get that nice fat discount on your car insurance). It's actually kinda depressing. So let's not talk about it.

The 26th was Libby's birthday though. Yup, my sweetpea "Loo Loo Froo Froo" just turned 3. How time flies. She's not a baby anymore. Well, actually, she all but refuses to potty train, so I guess that reduces her to the "baby" department still. But besides what she wears on her tush, she's pretty growny these days. She says "actually". Like, "I wanna get a drink, actually." Kinda makes you do a double take when she talks like that. But she sounds a lot like me, huh? She got a little papasan chair and a horse shaped purse (which she calls a "pursey") that she likes a whole lot. She also got some money, so we're gonna make a trip to Toys 'R' Us soon. How crazy can that get!!

I really don't like the fact that our birthdays are a day apart. It really stinks. Yeah, I know, as a Mom, I should feel "blessed" to share a special day with one of my darlings. Whatever. Birthdays are special, and they're supposed to be a day just for yourself. It's not like that anymore. And the real issue here is not that I actually share the day, but it's probably just that I tried to NOT share a birthday. I've been blessed with predictable fertility, and predict I have. I had (until Libbigail was conceived) spaced everyone's date of arrival in such a way as to not have more than one birthday in one month. We have birthdays in April, May, June, July, August, and January. Skipping November (our anniversary) and December (the obvious) were on purpose. Everything was just peachy--until my two best friends got pregnant. Well, since we were wanting to have another child anyway, we threw planning out the window and went for it. I got pregnant that month. Yeah! Um, when is this kid due? January?!?!? Argghghghhh! AND THEN....she was due on the 15th......and she came 11 days late. Which ended up being the day before my 27th birthday. So much for planning. Of all the people to have to share a birthday month. It's me who cares the most. And it's not like we coulda had our day on opposite ends of the month. NOOOooooOOOO.

I know. As Caleb says,"You just cryin' for nuthin." And I guess since I have to share it, she's a pretty cool kid to share it with :)

But happy birthday to me anyway. I got lots of cash to spend on house fixin', some Charles Wysocki puzzles, and a big birdfeeder which is very cool. Also, my hubby's supposed to put down some flooring for me (bye bye bad linoleum!) as my gift from him. What more could a "new house owner/stay-at-home-mom/self proclaimed neat freak" want?


So...we're still waiting on Michaela's chair. It was supposed to be here 2 weeks ago. Now, it's supposed to be here tomorrow. We're only waiting on the harness, which the manufacturer forgot to mail with the rest of the package. It should've been here on Friday, too. So I'm not holding my breath. But we're getting to needing it real bad. Michaela can't eat very well these days. Instead of not being able to swallow, she can't open her mouth much of the time. She can't figure out how to get her muscles to do it. In fact, she'll close it real tight instead of opening it. Almost like the signal is mixed up.

But what does that have to do with the chair? See, the chair is going to hold the feeding pump on it. Right now, she has an uncomfortable, sub-par rental chair that she sits in while she's on the feeding pump, which is held by an IV pole. Her new wheelchair will recline and have really nice padding, and it will FIT HER. That way, she can be comfortable while she has to be fed for 8-10 hours a day. Not that we don't stop it from time to time. Or let her sit somewhere else. But the chair keeps her from getting up and just "walking" away...while she's still attached to the pump tubing....OUCH. It could be a really bad thing. So we're really anxious to get the chair with the nice harness.

Unlike lots of handicapped kids, Michaela CAN walk. But it's not often in her best interest to do so. She doesn't quite walk, exactly. She more or less is constantly "falling" into the next step. Her balance is so poor that she needs to constantly be moving in order to keep from falling down. This often leads to stepping in the wrong place--or on the wrong person--like her crawling baby brother. SOOOOOoooooo, we don't let her roam as often as she'd like. Our next big thing may need to be a stander, just so that she can be in an upright position without moving around and possibly hurting herself (by walking into a wall) or the others. It's hard to justify needing this type of equipment sometimes. But her case is so unusual, and her physical needs are just not your run-of-the-mill. We find ourselves constantly second guessing ourselves. Or putting off what could help her, just because she wouldn't need it full-time, or she wouldn't use it for the same reason as most kids do. It's been a hard road of mind games.

On some days, I wish her various problems were more clear cut, and on others, I'm glad for the function she does have, even though it makes it harder for me to get help for her. Like, for instance: she doesn't get PT regularly. Now, anyone who sees her would think, "Surely that child gets physical therapy to help with how she can't do a whole lot!" Well, they don't feel it's necessary because she CAN walk. They would only give it to her regularly (in the school, that is) if she started losing that ability completely. Very frustrating to say the least.

At least we're getting this nice wheelchair. And it was nice to not have to fight with the insurance company to get it.

Sometimes there ARE rays of sunshine through the rain.


Two other things I'll have to write about later...

-Renee and Dave have a new little bundle of to be announced.
-PFTD, Round 2 has occured...more later.

Just to keep y'all lookin' for more ;)

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