Something on my Mind

When Grace was evaluated by a PT at Camp Hippo, his evaluation stated that he could tell she had scoliosis. But when we'd had her MRI done quite a few months ago, it was just an extremely slight curve, one that was barely detectable in an MRI. And now, just months have gone by and it's obvious enough that the PT can see it while she walks. I've tried over and over to try and feel her spine on her back, but I'm just not really sure how hard to push, and I definitely don't want to hurt her! SO my worry is that we've waited too long for another MRI, and that it's gotten a lot worse in a short amount of time. It wasn't really something that we had to worry about back then, but then we lost our insurance and couldn't have her MRI that same month like we were supposed too, and then it's gone on this long. I think what I'm worried about the most is the repercussions of scoliosis. It's bad enough that two parts of her brain that have to do with balance are smaller than they should be, but then for her to have scoliosis? He has also noticed how she steps higher with one leg than the other, and he's wondering if that's showing the scoliosis.

I don't know. I think, with everything else going on, that I'm just really worried about that little girl. Loving, no jobs, new home and new STATE for pete's sake! And new doctors that don't know a thing about her gene deletion! They'd never heard of it before. I mean, I can't hold it against them, it is rare, but still. At least act like you've heard of it...sheesh! I guess honesty before masking the truth, right?

That's not really it on my mind. Remember back when she had her spine surgery in April 2010. Remember what happened because of the surgery...she got the syrinx growing in her spine. The pocket of fluid, remember? Well, the last two MRI's she'd ever had showed an increase. It was amazing, at this point, to have to tell the technician that "yes, there IS an increase in size." She was just SO set on there not being a problem, but once I forced her to look again, that's when she actually saw the increase. Sometimes moms should just be the doctors! What could happen if the syrinx keeps growing, or, if it gets too big? Grace could lose her legs. Lose all mobility because the syrinx would press against the sides of her spine, irritating it, and could cut off whatever nerves she's got left headed to her legs. I'm also assuming it could effect her bowels/bladder in some way as well, seeing how the neurogenic bowel is already in place. I've done some reading up on these syrinx, and their testy things. It continues to grow because the fluid within the syrinx, (the syrinx is actually a cyst) continues to move, which pushes the sides out more and more. One of the conditions to watch for is a loss of feeling hot and cold in the hands and feet, which of course Grace has. Her feet can be ice cold and she won't even whimper. She's also got the gait that is improper, as well as ataxia. I just don't know what these doctors in Utah are thinking! We took her to Primary Childrens and the doctor said, "Well, we need to see you for a "first appt", and then we meet with you again to see if she needs an MRI." Are you freaking crazy?!! Of course she needs an MRI!! How many times do I have to say that MRI's were being taken EVERY 6 months to monitor the growth of the syrinx??? If it gets too big, it's going to damage my child, and it's going to damage her Independence, and let me say it will damage that Doctors reputation for sure!! I'll make sure of it. What doctor isn't going to be concerned with Grace's extensive background?! A shunt might need to be put in, which means another surgery. I'm definitely not looking forward to that, especially since I'm in a new state with no real support group close to me. The closest is 2 hours away...and they've got their own families, lives and things.

Now, this isn't Grace's back, but that's the idea anyways. See the white blob? It shouldn't be there. At all. Uh...deep breath. Sometimes a dose of normalcy would be nice.

Amanda