(This is NOT a sponsored post, nor was I asked to write about this product. I’m just sharing it because, well, it’s part of our life and that’s what I blog about sometimes.)
As most of you know by now, Jilly has cerebral palsy.
More specifically, her diagnosis is Coreoathetoid Cerebral Palsy…AND…while we’ve haven’t officially been given this additional title, I’m 99.9% certain that you could also tack on Ataxic to the formal name. (Why yes, I did go to the Medical School of Google! I’m totally qualified to diagnose my daughter. Right?)
Whether her neurologist adds the term or not, the fact remains that in addition to low muscle tone, she has a shakiness to her. It’s noticeable…but only if you are paying attention. Basically, think of a really cute old person: you know how they have this little tremor to them? Their hands kinda shake, especially when they are doing something specific? Well, Jill does that. It’s most noticeable when she’s doing something like trying to hold a crayon, we’re working on her standing, or when she’s really tired. But you probably wouldn’t notice it if she was just sitting in the Target cart (unless I told you and you really paid attention).
She’s always trembled. In fact, it was our first sign in the hospital, only a few hours old, that something wasn’t right. She just started shivering. As if she was freezing cold…standing in her skivvies in the Arctic Tundra kind of cold. Nurses kept taking her temperature thinking she might have a fever or something, but she didn’t. The shivering got worse and worse, until finally, she was transferred to the NICU and our adventure began. As a bitty baby, her shivering continued and subsided over the course of months. It never fully went away, but in those first few months we would swaddle her so super tight, just to calm some of her tremors…oftentimes, if we didn’t bundle her up in an extra tight burrito, her shivers would actually wake her up.
As we continue down this path of CP, her Physical Therapist, suggested a Benik Compression Vest. It’s basically nothing more than a neoprene vest…like a hot pink wet suit that we can adjust snugly around her trunk. Making her feel like she’s embraced in a big hug all day long.
She looks like a little water skiier. Blonde pony and all. I die.
For Jilly, this hot pink (because really, was there any other color choice?!) vest has been nothing short of fabulous. It may be made of neoprene, velcro, and a zipper, but as far as I’m concerned, it’s made of happiness, unicorn tears, and glitter. The difference in her stability, the way she is SO much more confident on her feet when she wears it…is incredible.
Don’t get me wrong, she’s not racing her brother and sister, nor is she walking or taking steps (yet)…but she lets go of things (and especially if she isn’t paying attention) she can stand unassisted for a few seconds at a time! (Because if she realizes she’s not holding on, she gets scared and sits down.)
This is hugely gigantic. It may not seem like a big deal for your almost three year old to stand for 3-5 seconds, but I am telling you, it’s a BIG deal around here.
Paired with her ankle braces (SMOs), she’s a rockstar. I call her our little Bionic Woman.
Our Bionic Waterskiing Woman.
I mean, seriously…the fact that she will even sit in this little rocking chair…a chair that moves (something that would normally terrify her)…is something I wouldn’t have dreamed of just a few weeks ago.
When will Jilly walk? I don’t know. But I can tell you that if instability is an issue for your little, ask your medical team about a Benik Compression Vest. While I can’t guarantee it’ll be the ticket for you…I can tell you that it’s been wonderful in These Here Parts and I love, love, love it.
Okay, I don’t love how bulky it is under her clothes and I don’t love putting it on every morning, but it could be worse, right?
Besides, she looks awful cute in it. And let’s face it: that never hurts.