One of Charlie's nurses has been braiding her hair every day. This is what it looks like when I take it out. 80's chick! Complete with ear buds for her tunes. LOL
Easter sunday. What's so interesting?
A giant dog! Marmaduke is a 1 year old great dane. Charlie loved him.
We got The Vest System for Charlie. It basically jiggles the crap out of her lungs. Here's the vest that straps to her:
And the machine:
And an action shot:
She thinks it's pretty cool. She smiles and squeals when we first put it on, but then just relaxes and enjoys it. We can't tell yet if it's making a difference. Funny though, how medicaid fights us on a $150 antibiotic, but hands over a $14,000 machine they don't even know will help or not. Weirdos.
So other stuff:
We're pretty sure we're going to take her in to have another procedure done to try and control her secretions. It's NOT the surgery I mentioned before. The take her into radiology and inject stuff into her salivary glands to basically kill the tissue. We all have 3 pairs of salivary glands. 6 total. Usually for this procedure they do 3 of the 6. Charlie is a super saliva producer though and since she really can't handle her secretions at all, they are going to kill 5 of the 6. *gulp* It sounds scary, but they say it's tons more effective than Botox. Only it's a relatively new procedure. They've only been doing it 2 years. Charlie will basically be a guinea pig, but I don't see any other option. She's getting WORSE and we need to do something to make her more comfortable. I'm only nervous because they WILL have to put her under and intubate her. We cannot get around it like we did with the Botox. But they say it's not very painful. She'll be swollen for a few days though. That will be next month or maybe early June.
Charlie's head grew! Ok, so I know it doesn't mean much, I was just taken by surprise. I used to agonize over her lack of head growth. I watched her fall further and further below the charts, knowing what it meant....her brain doesn't grow. In fact, it's atrophied quite a bit. So I quit measuring it. I never asked when they did it at the doctor's office. I figured it just doesn't matter. But the other day I had my tape measure out (for me....I've lost 15 lbs!) and I got curious. Her head grew almost an inch! Since....oh I don't know, maybe 6 months ago? I know it's still way small. But it was a nice surprise anyway.
Charlie found her legs. She LOVES to kick! And she's getting pretty good at it. We took her kick'n'play piano that was strapped to her crib, up by her torso so she could reach it with her hands, which she was never very good at, and put it at the foot of her crib. And she kicks it! Just like kids are supposed to!
She's learning to make a "g" sound, as in "good". She sort of did it on accident at first but we've been working on it and I think she can do it on purpose now, at least sometimes. She makes the sound at the end of her "ehhhhs". "Ehhhh...G". So that's exciting. Not that I expect her to just start talking, but if she even has just a few different sounds, maybe she can use the differences to communicate in her own way.
She's attempting to hold her head up more. Don't get me wrong, she still SUPER floppy. But she's trying. I've caught her holding it up herself for several seconds about a dozen times in the last couple of weeks.
A cute conversation between her and her nurse (D) yesterday:
D: Hey Charlie, what's your favorite color? Do you like red?
C: Ehhhh!
D: Do you like blue?
C: Ehhhh!
D: Do you like yellow?
C: (silence)
D: Ok, not so much for yellow huh? What about pink?
C: Ehhhh!
D: What about purple?
C: (silence)
D: No purple huh? What about green?
C: Ehhhh!
She knows what she likes. :-D Funny, I thought she would have liked purple since Barney is purple. I figured that's why she liked Elmo, because he's a nice, bright color. Or maybe she really does love them for their qualities and not just because they are easy to see. Of course, we don't actually know how severely her vision is impaired. Maybe not as much as we think.
So other stuff:
We're pretty sure we're going to take her in to have another procedure done to try and control her secretions. It's NOT the surgery I mentioned before. The take her into radiology and inject stuff into her salivary glands to basically kill the tissue. We all have 3 pairs of salivary glands. 6 total. Usually for this procedure they do 3 of the 6. Charlie is a super saliva producer though and since she really can't handle her secretions at all, they are going to kill 5 of the 6. *gulp* It sounds scary, but they say it's tons more effective than Botox. Only it's a relatively new procedure. They've only been doing it 2 years. Charlie will basically be a guinea pig, but I don't see any other option. She's getting WORSE and we need to do something to make her more comfortable. I'm only nervous because they WILL have to put her under and intubate her. We cannot get around it like we did with the Botox. But they say it's not very painful. She'll be swollen for a few days though. That will be next month or maybe early June.
Charlie's head grew! Ok, so I know it doesn't mean much, I was just taken by surprise. I used to agonize over her lack of head growth. I watched her fall further and further below the charts, knowing what it meant....her brain doesn't grow. In fact, it's atrophied quite a bit. So I quit measuring it. I never asked when they did it at the doctor's office. I figured it just doesn't matter. But the other day I had my tape measure out (for me....I've lost 15 lbs!) and I got curious. Her head grew almost an inch! Since....oh I don't know, maybe 6 months ago? I know it's still way small. But it was a nice surprise anyway.
Charlie found her legs. She LOVES to kick! And she's getting pretty good at it. We took her kick'n'play piano that was strapped to her crib, up by her torso so she could reach it with her hands, which she was never very good at, and put it at the foot of her crib. And she kicks it! Just like kids are supposed to!
She's learning to make a "g" sound, as in "good". She sort of did it on accident at first but we've been working on it and I think she can do it on purpose now, at least sometimes. She makes the sound at the end of her "ehhhhs". "Ehhhh...G". So that's exciting. Not that I expect her to just start talking, but if she even has just a few different sounds, maybe she can use the differences to communicate in her own way.
She's attempting to hold her head up more. Don't get me wrong, she still SUPER floppy. But she's trying. I've caught her holding it up herself for several seconds about a dozen times in the last couple of weeks.
A cute conversation between her and her nurse (D) yesterday:
D: Hey Charlie, what's your favorite color? Do you like red?
C: Ehhhh!
D: Do you like blue?
C: Ehhhh!
D: Do you like yellow?
C: (silence)
D: Ok, not so much for yellow huh? What about pink?
C: Ehhhh!
D: What about purple?
C: (silence)
D: No purple huh? What about green?
C: Ehhhh!
She knows what she likes. :-D Funny, I thought she would have liked purple since Barney is purple. I figured that's why she liked Elmo, because he's a nice, bright color. Or maybe she really does love them for their qualities and not just because they are easy to see. Of course, we don't actually know how severely her vision is impaired. Maybe not as much as we think.
5 comments:
LOL, I love the 80s crimped look :) Good luck with the surgery!
My daughter is micro-cephalic since she only has about 50% of her brain, I used to agonize over her head circumference growth, too. Not sure why but I just kind of got over it. I mean there's nothing we can do about it, so what's the sense in fretting over it?
Charlie is doing AMAZING!!!!! It's so good to see her! I've been doing 2 french braids on Amelia each day because they seem to stay in better than barrettes or ponytails. Love the kinky aftermath too!
We have the Vest for Amelia which we do twice daily for 20 minutes and then follow up with a Cough Assist (it simulates a deep cough and gets out the mucous too)...then lots of suctioning. She's been doing really well with it. No pnuemonia since we started this new regimin. I usually do the the treatments in the stander. Do you have a stander for Charlie?
Good luck with the salivary gland surgery. I'm so curious to see how that helps. We definitely have those issues too.
I know barney is TECHNICALLY purple... but he used to be a lot more purple... and I really think he's more of a pinky/purple mixture.... that's me.
And if you REALLY wanna see her hair look like a bad 80's perm... tiny sections... twist tight, wrap into little buns... secure with elastics... a little hair spray when you're done and your fingers are aching... take down the next morning... HOLY POODLE HEAD
Wow Charlie is doing great it sounds like. I'm so happy you took the time to put up this update when you did, I know how chaotic life must be for you. I hope the new machine works for her (and I get the medicaid gripe, they fought us over a stupid spacer for our 4yr old's inhaler last year but are fine with dropping $300 on our 7yr old's Adderall every month)
We have those same conversations with Lily all the time, lol.
And yeah, wtf is up with Medicaid? They paid for a $9K sitting chair and a $6K wheelchair at the exact same time, but are refusing to pay for a special needs bed for Lily because 'she's not mobile enough'.
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