06/13/11So with Grace's 7Q36 gene deletion comes low muscle tone, and even though we knew this, it just never occurred to us that it would be that big of a deal. It's kinda like when doctors tell you "oh you could see this as a symptom" but then you NEVER see it, so you just forget they told you. Yeah, that's how we were with the whole "low muscle tone" thing. But then, like with everything else in life, you come to a point where something happens during the day, even if just a minute in your fleeting day, that you notice something you've never noticed before. Like the pictures below! This is her second time in her jumper, and why we didn't notice this the first time, I don't know! Check out her legs...



Do you see how scrawny they look? I mean, yeah, she's got some chub. But the lack of muscle, the lack of... "bulk" is what we're looking at. That's the "low muscle tone." There's nothing that we can do about it. There's nothing bad about it...well, kinda. You see, with low muscle tone, she's not as capable to bear weight, obviously, which is why she's not walking yet! That's just my assumption of course. And of course, if anyone knows me, they know I do EXTENSIVE research online after finding out something! So, after my research, I realized that low muscle tone, also known as "Hypotonia" can cause speech delays, which she has, and they also have delays in self feeding, which she has. Also, she's NEVER liked it when we do stretches that have to do with her quads! We've worked on straightening her legs out straight for a long time, but she always fusses, strains, and will kink her legs back to angles before I blink!
What do I do with this information? Not much. I'm not going to freak out about it (for once). I think, like Brad tells me, "know the information, realize it and accept it, and then let it go." So that's what I'm going to do. I will be more determined to do strength exercises with her, to work on stretching, and to work on feeding skills, but other than that, she'll get the task when she's ready. She'll learn how to walk when her body thinks she's ready, and maybe she can't feed herself now because I keep hand-feeding her!!! (I know I'll definitely have to read this on a bad day!)
I kinda like her frog legs :) I think they are super cute!! And I love them just the way they are!
Amanda