February 28, 2008 - Catch 22

Okay, it's about time for me to update, eh?

So, tomorrow, or rather, today, Brianna has an appointment with the feeding clinic. Hopefully we'll find out whether she is going to have a fundoplication done again, and if so, when. I really hate having things up in the air like this. Something needs to be done. She's throwing up once or twice a day, and it has to be miserable. It's going to cause more serious problems down the line if we don't get it taken care of. So we'll see.

In other news, Brianna is making some amazing progress in verbal sounds. She is starting to link consonant sounds together, and the other day, it sounded like she was trying to say "kick you"! I'm so proud of her. She's just so vibrant and happy, and I can only imagine, if she didn't have these disabilities holding her back, she'd be running around, making messes, and talking up a storm the whole time. And I'm sure she'd be spoiled rotten. Thinking about how different she would be, were it not for the disabilities she lives with, hurts sometimes. To think of the things she might miss out on, the things she might never be able to do, is difficult. She tries so hard! She works so hard in her wheelchair, or her walkabout, or whatever else we have her in! And she gets so frustrated when things don't go her way! Watching her in the walkabout, looking at pictures of her in it, it is so evident how little strength she has in her neck and trunk. With so little ability to support herself, will she ever be able to walk without that blasted walkabout?

We found out today that a three bedroom apartment is coming open in this complex, and our name is next on the list, so we get to move into it April 1st, maybe sooner. I am so excited! It's significantly bigger, with, of course, an extra bedroom, a half bathroom downstairs (now I won't have to run up and down the stairs any time I have to pee!), and several more square feet in the living room. Maybe we can get a second couch, or a recliner. Or better yet, we can actually set up the dining room table! Yay!

I also talked to a very nice girl today on the phone, and she is interested in watching Brianna for me, so I can possibly go back to work. They are severely short handed at Sunnyside, having two cooks and one dietary aide no longer working there. So I'm confident that I can get my old job back. Or rather, a position as cook, making a few dollars an hour more. Which would be nice. But I have to be cautious, so I don't lose Brianna's SSI. If I lose her SSI, we lose her medical, and that is just a disaster in the making.

Am I the only one who sees this as a catch 22? I am broke off my duff, so I receive TANF and foodstamps for myself. Brianna receives SSI ($637 a month), so she isn't eligible for TANF or foodstamps. If I get a job making $8 an hour, working full time, I make too much to receive TANF or foodstamps. So I lose that and my medical. My rent is based on income. So if I receive more money, my rent goes up. But if my rent goes up, my TANF income goes up. So if that happens, my rent goes up again. And back and forth, back and forth. Then, there's the whole issue of the SSI. So long as Brianna receives SSI, she is covered by state medical. If I make too much money, she will stop receiving SSI. So then her medical bills come out of my pocket, and I end up broke again. Any and all money I might make beyond what would make me eligible to apply for SSI for her would go to pay the medical bills, since no insurance company is going to cover her therapies and such, with a pre-existing condition. So it seems like there's no getting ahead. If I get ahead money-wise, we lose money, and then we get behind again. If we stay as we are, and don't try getting ahead, then we're still behind, with no room for anything extra. It's a never ending cycle!

Okay, I'm going to stop rambling for now. I've got tons of new pics, since I got that new camera, so I'll post some of those tomorrow.