Sunday, September 13, 2009

Long overdue....

I'm long overdue for an update! I've been busy planning Charlie's birthday party. We're having it a bit early because I want to be sure to catch the good weather. You just never know if it be in the 90's or the 50's in early october. She didn't get a party last year so I'm kind of overdoing it a bit this year. Plus she's had it pretty rough the last 6 months or so and quite honestly it's a celebration in itself that she's even made it to 2! And as sad as it sounds, we don't know if she'll have another birthday. Or maybe only one or 2 more. She's still generally going downhill, though we have the convulsions mostly under control. I hate to blog about it...I'd much rather blog about just the good stuff. The inchstones, the new gear, new favorites, every smiley picture...that kind of stuff. But here it is out in the open...she's getting worse and worse with handling her secretions. The doctors say a trach will not help. It might help with her airway but she will continue to aspirate pretty badly. She's having more airway problems. Her scoliosis has gotten a bit worse which can affect her respiratory system. We're using fentynol almost daily for air hunger. She's having more pain. It's not terrible, but it's there. So we've been giving extra meds. She's getting more fluid since her last tube change, but she's still retching quite a bit and I think that's part of where the pain is coming from. Even though we've almost doubled her calories and increased her fluids by 8 oz a day, she's not gaining weight. She still has days where she might have only 2 wet diapers. Just this last week she's arching her back and pulling away when I touch her legs...I'm afraid her hips are hurting and I am NOT looking forward to the day they start to dislocate (common in kids with CP).

So the good stuff. She's still smiling and laughing a LOT. She has good days and bad days. On her good days it's just non-stop Charlie fun. :-) Today my friend's dog went up and licked her and she got super excited. She doesn't get to play with animals very often. So she was putting out her hands and kicking out her legs. I told her, "Charlie, if you want the dog to come back over, you have to call her..go 'ehhh'!" And she went, "Ehhhh!". LOL So she learned to call the dog and spent most of the afternoon doing that. And she just smiled and smiled and cooed at that dog. I didn't think about it until later that I should have gotten pics or video. Whoops.

I let her ride forward facing in the car the other day. I know, bad mama. To be honest, Adrian had used her seat and I was in a hurry and just put her in it. It's going back rear-facing before she rides in it again I swear. ;-) But she thought it was *excellent*. I can see how some kids get a kick out of the novelty of sitting forward facing. She laughed and cooed and smiled the whole 20 minutes. Sheesh. Is it that big of a deal? Oh well if it is, it really kind of freaked me out to have her sitting like that. I said over and over that it didn't matter much to me if I got a forward-facing only seat because I feel it's not much of an issue for her because if it's not a car accident that kills her it'll just be something else. But the whole ride I just kept picturing someone hitting us and her head flying forward and snapping her neck. Yikes! Guess it's a good thing I didn't buy that other seat huh? Just having her ride like that one time made up my mind. Should have done it weeks ago when I was agonizing over it. Would have made the decision a hell of a lot simpler. LOL But the seat does have a nice recline. Her head didn't flop forward at all!

So gotta get back to the birthday party stuff. I'm making a lot of the goody bag treats....will update on that after the party. Don't want to spoil the surprise for the people coming!


Rosetta said...

Have fun! Each of these special needs kiddos birthday is so meaningful, just knowing that God allowed us to spend another year with them.

We're having Sierra's party on Saturday.

Amy said...

Thanks for the update Shauna! Glad to hear of all the good things and sad but good to know the more icky things too. Happy Birthday Charlie!!! Have a blast. xx Amy

Kat_momof3 said...

I'm glad you're able to concentrate on the pros as much as possible these days.

And yes, it FREAKED me out horribly the first times that Ruthie rode FF... but when she was 2.5, it didn't... I think it's because she was just so much older, bigger, and before it was the "but omg, she's not TWO..." knowing from that (now old, but then still recent) article on msnbc about 2 being a crucial age in regards to rf/ff like 1 used to be.

Shauna said...

It freaked me out with Adrian too, but he was so BIG, but younger. He was about 17 months and 32 lbs when I put him ff'ing. I knew rf'ing was better of course, but didn't know of a seat with enough HEIGHT. Of course, now I know...even a $99 intera could have done it. Oh well. Charlie is 2, but she's just so tiny still. Barely 21 lbs. Still fitting in the SS1.

swgoats said...

Happy Birthday Charlie!! Gosh, I can't believe how old these kids are getting. Joe will be two pretty soon too.

Don't stress too much about the carseat. It's a mom thing. I drive really slowly over bridges cause I'm afraid of what would happen if I went into water with my three strapped in those things!!