Sorry it's taken so long to update. I've got a million people asking how it went and I'm just dragging my feet. It's daunting to write out a post like this, with lots of emotion going on and all that. Thankfully I already wrote to update the ladies on c-s.org, so I'll just cut and paste from that. :-D
"Back from Charlie's genetics appointment.
Well, it was....interesting.
Nothing came back abnormal. I'm not too upset. I was prepared to hear that.
The part I just cannot wrap my head around is that I cannot understand why Charlie is soooo different than other kids with HIE injuries and CP. And why there seems to be NOTHING in the research I've done that describes her explains what's going on. So I told the doc this.
He says, "Well, there isn't a lot of info out there because it's rare for kids to be this bad and they usually don't live long enough to have brain deterioration like this."
So she refuses to die, so we'll just watch her brain deteriorate. Wonderful.
So it's kind of upsetting that the reason I've been hunting for some other reason she's like this is because the info DOES NOT EXIST. New mission....get the info out there so other parents of these kids, as rare as they are, can have SOME understanding of what's going on with their kid.
So he cleared that up for me, but otherwise he was a real piece of work. His exact words, "Now I don't want to blame you *entirely* for what happened but next time you should really get prenatal care."
Hey DUMBASS! I DID get prenatal care! @#@$^^&#$#$
I got BETTER prenatal care than I would have with an OB, and really, if this WAS an acute HIE event like they think, what the hell could an OB have done!? Predicted that the cord would get compressed during labor? Yeah because we all know doctors are all-knowing, infallible gods.
If I'd gone into a hospital and let them do whatever they damn well pleased, with their pitocin and epidurals and stirrups, I would have been the unlucky mom who did everything right, even though we all know pit can CAUSE these problems in a baby. It still really pisses me off that there are people out there that think these things are the mother's fault. No it's the mother's fault when she smokes crack. Not when she has a wonderful pregnancy, a beautiful birth, and a perfect baby who just couldn't breathe.:-("
Ok some of that didn't make a lot sense. LOL Like the hunting for info part. I'm looking for a reason she's like this and coming up empty because the info doesn't exist. I was still kind of upset when I wrote it. I could probably write it out better now that I'm sane again but I'm just feeling too lazy.
Charlie will always be a mystery and I have to accept that. Thankfully, if I have more kids, this is NOT likely to happen again.
Here she is the next day, enjoying a ride in her beast of a stroller. She likes the speed bumps and popping wheelies. LOL I had to put the extra pillows on because Little Miss Daredevil's head flops all over the place with all that action.
She's been pretty much jerk-free for 2 weeks now, but she's having other problems, like with losing weight. You can see her arms getting skinnier and you can see all her ribs. Her thighs have stayed chubby, but it's all skin and fat....no muscle mass whatsoever. We're going to attempt to increase the concentration of her formula since we can't increase the rate. She'll still only be at 17.5 cal/ounce, not even full strength.
She woke up sick this morning. We never know if she's actually sick or if she's having autonomic problems. She spiked a temp and had a few seizures. She breathes really hard and fast and her heartrate goes way up. But then she will act normal. I'm hoping this is not a sign the jerking is coming back. We decreased her oxycodone since she's been doing so well. I really don't like how much it dopes her up, but if that's what it takes to keep her happy and jerk-free, that's what we'll do.
I'm probably going to skip her neuro appointment tomorrow. They are just useless and while I know there is a slim chance they will be able (and willing) to help us, I'd hate to drive to Dublin with a sick kiddo just to be told there's nothing they can (or will) do. I know she's on every med possible that generally helps with this type of thing. And it bothers me when they insist her neurological status has nothing to do with her overall decline. Really, is it so hard to put 2 and 2 together? When she jerks, she *immediately* starts to struggle. Hardly a coincidence after...what? 18 months?
And I'm thinking we're going to skip the Botox too. I just can't justify all that for a "maybe it will help a tiny bit" procedure. It sucks that we have to suction her so much, but it's all she knows and she doesn't complain. It doesn't bother her. And IF the Botox helps, we might be able to decrease how often we suction, but it will still be an all day, every day thing.