Just a quick update. We still don't know what's going on with Charlie. We have her jerking episodes somewhat under control now...it just involves drugging her up quite a bit. I wish we knew how to treat them at the root of the problem but maybe we are....maybe it's the only way. So she's still on Klonipin. 4 times a day. And Baclofen 3 times a day. And the Clonidine we give her at night...we can now give it PRN. This is the one thing that *always* makes her stop jerking once she starts. Because it knocks her out for a couple of hours. I'm not thrilled that knocking her out seems to be the only way, but at least it's better than the alternative.
Her flu turned into a sinus infection. Poor kid just randomly squirts blood from her nose. We've been trying not to suction her nose at all, but it doesn't seem to matter. It's going to bleed anyway. So I'll be glad when this is gone.
We have an appointment today at the CP clinic. I'm not looking forward to it at all. I go to these things because I think at some point, MAYBE we'll get some advice that will help. A tidbit of info that will make her life easier. But at a lot of appointments like this I end up feeling very depressed because they go on and on about what she can't do. Like I didn't already notice. I picked up a free Columbus Parent magazine a couple of weeks ago and it was talking about the Easter Seals and the interviewed a little girl with CP. She has difficulty with a lot of things, but she can physically do almost everything, it just takes more planning, care, patience, ect. I think even doctors expect CP to be like this. And lots of people with CP *are* like this. But it's frustrating to me when they look at Charlie in complete and utter shock and say, "She can't even lift her HEAD!?" No she can't. Is it really all that surprising to them? Surely Charlie isn't the first severely affected kid they've seen right? I've even had a nurse comment when we've been inpatient, "Omg, did you know she doesn't have a gag reflex!?" No $hit sherlock. Did you also notice she can't swallow or eat or even function remotely normal in that area? She has a gj, oxygen, and is suctioned 30 times a day. But no, I didn't notice her gag doesn't function right. *rolls eyes* Another nurse one time said "Doesn't she get ANY therapy!?" This was back when she was going 4 days a week. I was pretty miffed. Like lack of therapy was the only reason a kid could be so devastated physically. And at the seating clinic, the lady walks in and sees DD (I don't know how people don't notice how affected she is just at a glance, especially a professional) and she takes her out of my arms, sits her on the table and says, "So how's she doing on sitting?" Um, she's not? At all. Don't let go of her! Seriously, she was about to let go to see if Charlie could hold her balance. When people see Charlie, they assume she's asleep. Why? Because she's a limp noodle. Her arms fall to her side, her head falls to the side, her legs droop limply in my arms, and she barely moves. Once in a while she moves an arm if she wants something. But they just walk in and think she can SIT? I don't understand...
So as you can tell, it bothers me. She's severely affected. More so than most other kids. And she's declining. They expect development and she's not going to give it to them. *I'm* fine with it. Charlie is Charlie and she's smart and special in her own way. I just wish people would quit walking into a room, seeing her one time and just expecting her to be coming along. I just feel like all the equipment she's hooked up to should be a tip-off. If a kid can't swallow, they are going to struggle. It's pretty obvious to me.
I can't remember if I already mentioned it or not. We're going to do genetic testing. Nothing has ever added up with this child and I'm hoping we can eventually find some answers. So we're starting there. I know even if we find something, we won't be able to "fix" her but at least it will give me some closure.
Her flu turned into a sinus infection. Poor kid just randomly squirts blood from her nose. We've been trying not to suction her nose at all, but it doesn't seem to matter. It's going to bleed anyway. So I'll be glad when this is gone.
We have an appointment today at the CP clinic. I'm not looking forward to it at all. I go to these things because I think at some point, MAYBE we'll get some advice that will help. A tidbit of info that will make her life easier. But at a lot of appointments like this I end up feeling very depressed because they go on and on about what she can't do. Like I didn't already notice. I picked up a free Columbus Parent magazine a couple of weeks ago and it was talking about the Easter Seals and the interviewed a little girl with CP. She has difficulty with a lot of things, but she can physically do almost everything, it just takes more planning, care, patience, ect. I think even doctors expect CP to be like this. And lots of people with CP *are* like this. But it's frustrating to me when they look at Charlie in complete and utter shock and say, "She can't even lift her HEAD!?" No she can't. Is it really all that surprising to them? Surely Charlie isn't the first severely affected kid they've seen right? I've even had a nurse comment when we've been inpatient, "Omg, did you know she doesn't have a gag reflex!?" No $hit sherlock. Did you also notice she can't swallow or eat or even function remotely normal in that area? She has a gj, oxygen, and is suctioned 30 times a day. But no, I didn't notice her gag doesn't function right. *rolls eyes* Another nurse one time said "Doesn't she get ANY therapy!?" This was back when she was going 4 days a week. I was pretty miffed. Like lack of therapy was the only reason a kid could be so devastated physically. And at the seating clinic, the lady walks in and sees DD (I don't know how people don't notice how affected she is just at a glance, especially a professional) and she takes her out of my arms, sits her on the table and says, "So how's she doing on sitting?" Um, she's not? At all. Don't let go of her! Seriously, she was about to let go to see if Charlie could hold her balance. When people see Charlie, they assume she's asleep. Why? Because she's a limp noodle. Her arms fall to her side, her head falls to the side, her legs droop limply in my arms, and she barely moves. Once in a while she moves an arm if she wants something. But they just walk in and think she can SIT? I don't understand...
So as you can tell, it bothers me. She's severely affected. More so than most other kids. And she's declining. They expect development and she's not going to give it to them. *I'm* fine with it. Charlie is Charlie and she's smart and special in her own way. I just wish people would quit walking into a room, seeing her one time and just expecting her to be coming along. I just feel like all the equipment she's hooked up to should be a tip-off. If a kid can't swallow, they are going to struggle. It's pretty obvious to me.
I can't remember if I already mentioned it or not. We're going to do genetic testing. Nothing has ever added up with this child and I'm hoping we can eventually find some answers. So we're starting there. I know even if we find something, we won't be able to "fix" her but at least it will give me some closure.
Zonked. After her flu and right before the sinus infection kicked in. So peaceful! And can you believe how cute and LONG her ponytails are getting!?
My mom got a new outdoor swing and gave us her old one. Charlie LOVES it! She was squealing and carrying on. So that will be something fun to do this summer without even having to leave the house. I love this pic, by the way. She's so goofy sometimes. LOL
I laid her down to go get a blanket (we are STILL having cold days here!) and she squealed and reached up to touch the stripes. She's been reaching for stuff more, but she's only motivated to do it for stuff she really, really, REALLY wants. She'll look at a toy longingly for 1/2 an hour, but unless she's just dying to have it, she's not gonna reach for it. Silly kid. 
6 comments:
I'm sorry you're still not getting answers to your questions and are dealing with so many bird-brained ones from the professionals to boot.
But I must say, that's one CUTE little girl you've got - I love the pic on the swing.
Hi, I found you from MDC and may I just say you are one amazing mom with a lot of strength and I just love reading about the ways you advocate for Charlie and stand up to the dr.'s and nurses. She is beautiful!!
Julie
Love the picture of the two of you on the swing!
Hey girl!! I don't blog often! Don't get discouraged...i know it sucks, same boat here. :( Have you joined the yahoo "severely disabeld " kids group? They're awesome and i haven't seen you on there. I'm sure you've looked into it already but i was thinking some of the meds she's on could cause urinary retention.
Yeah they said the baclofen could do it. They were discussing if we could take her off...I totally would except the baclofen isn't for her overall spasticity (she has almost none) it's for the spasticity in her airway. So it's kind of important for her to breathe. That was the only one they could think of that might actually cause it. Of course it would be the one we can't give up.
So far we haven't needed to cath her. She does eventually go, but she's really pushing it. If she keeps doing this she'll probably end up in pain or with an infection, but I'm just going to relax until we really run into problems. I just know she's going to get worse....she usually does.
I did subscribe to that group but I just never really got into it. I got to parent-2-parent.com. It's a message board and it's pretty diverse as far as what the kids' medical problems are, and disabilities and stuff.
Shauna,
I found your blog from MDC, and just wanted to tell you how much I enjoy reading about Charlie. I'm a physiatrist, and would be a pediatric physiatrist if I could stand living in a city large enough to support one--instead, I just work with kids whenever I can :).
Charlie is a lucky little girl to have you as a mom. Hang in there with regard to dealing with the medical world....
C
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