Wednesday, November 16, 2011

Still on the car seat thing...

The DME brought out a Britax Traveller to try. Charlie fits in it very nicely but I'm still iffy. I nixed the idea of the Recaro. It just sits up so high on it's base I know I'll have trouble getting her in and out of the car. The Traveller is nice, but I keep finding myself eyeballing the Roosevelt.

The Roosevelt will last her longer and has more features that would suit her. It has a 35 lb minimum weight on it, but I called the company and they said it has been tested with the 1 year old, 22 lb crash dummy and passed. They only put that minimum so people wouldn't put babies in this seat (they feel strongly that little ones should be rear-facing, and this is a forward-facing only seat). So hurray for a company that actually CARES about safety! The main dude there wrote a letter of exception for Charlie since she's plenty old enough to be forward-facing. He said he's never had a problem with insurance not paying with the letters he writes. We shall see.

I just need to find a model in town somewhere that I can try her in. I don't want to make a decision without actually trying her in all of the options.

Pics of the Traveller:

Not bad at all! I expected her to slump but she really didn't.

The pretty purple outfit she got for her birthday from Ava and her family:

Got our Christmas tree up!!!

And yup, there's the presents too. I like to get it all done early so I'm not scrambling the week before Christmas. Also, it's easier for me to budget if I take it in small bites.

Charlie loving her iPad time! I haven't gotten a good video of her playing with it yet, but you can see here from her smile how much she loves it!

Autonomic crap! Boo! It's getting worse and worse. I called her primary doctor today and will be calling her neuro tomorrow. Then her primary will call the neuro and discuss everything. She's storming several times per week, up from about once a month. So we're having to knock her out with Clonidine all the time. Here's what her face does at the beginning of a storm:

Ignore the red circle on her neck...that's just irritation from the scopolomine patch. But her cheek! It looks like someone backhanded her! And her temp shoots up. On one occasion to 105! And her heartrate soars to the 180's. And she acts like she can't get enough oxygen no matter what, even if her sats are fine.

I feel like she's never going to be right. :-(

I know this isn't something that's going to get better but it would be nice if we wouldn't have to just keep drugging her. But it seems that's really the only answer. Bah! I imagine what I'll hear from the doctors is to go up on her Klonipin. That would put her higher than she's ever been, even when these storms almost killed her back in 2009. Of course, she's bigger now, but still... I wanted to get her OFF some of these meds!

Ok I'm done pouting. Onto some good stuff...

Apparently I qualify for medicaid if I just make a little less money. So, easy choice for me. Cut some hours at work and get my teeth fixed. Yeah I'll have to watch my budget a little more closely, but it'll be worth it! My teeth are so bad I'm having difficulty eating. I've been going for soft stuff like...lots of bread. I've put on 3 lbs! Yeah it's not a lot, but enough to freak me out. I will NOT ever be fat again! So I'm going to get my teeth fixed. And I'm going to eat vegetables again. Yep. And lose these 3 lbs.

I'm super excited for Christmas. Adrian has a boatload of presents under the tree. He knows he has to donate some of his old toys though, to make room for new ones. He's gathered up two trash bags full of stuff and he hasn't even gotten to his room yet! He did the toy corner in the living room, the toy corner in my room, and all of Charlie's room. All with minimal help from me. The only thing I did was help him along in a decision when he was struggling. I'd ask him questions like "When was the last time you played with it?" and "Do you think you'll play with it in the next month?" Pretty good for a kid who's learned hoarding from his dad. I'll beat that behavior out of him if it's the last thing I do! He's gone from wanting to collect bits of trash, to willfully donating toys. Makes me one happy mama. :-)

It's always hard to find things Charlie can actually "play" with so I'm trying to focus less on that this year. She's getting her whole bedroom redone, of course. I got an 18' LED rope light to string around her room. And a jellyfish aquarium to use as a nightlight:

Adrian is getting a DS Lite with 4 games, some Lego sets, and I'm making him a Lego storage/play area. I got the idea from Family fun magazine, which it doesn't seem to want to let me link to. And some other little things, like the Lego Ideas book and some comic books.

The Lego storage thing is as much for me as it is for him. I tell people it looks like a Lego factory barfed in my house. LOL

I just cannot WAIT to post pics when her room is done! I have all these ideas about how to make it look more like a little girl's room and less "medical" looking. I'm going to make a pretty cover for her oxygen concentrator for when it's not being used. And I'm going to get a cabinet like this one, to stick all of her medical crap in. That way we can shut the doors and it will all just...disappear! For a little while anyway. I'm going to hang her white board with her list of meds and other stuff inside one door, and hang all of her important papers inside the other door. I'll cut holes in the back panel to feed all the cords through. Her pulse-ox, nebulizer, Vest system...will all be tucked away. I'm going to put a little hook on one side of her headboard for her feed bag to hang on. I'm going to get a little side table for her suction machine. It'll be great, just wait!'s almost 11 pm, I'd better go to bed!

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