(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.
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love to see her standing and that grin that never ends! love to see her putting on weight and really growing up. squeeze her tight for us.
emma just saw her picture and said… “is she in pre-school? she looks like a big girl.” you go jill, you are a big girl!
She is absolutely adorable. During the summer, she could just wear this around and be totally So Cal surfer gal! :) Its good to see a positive story and I love with interventions really do the trick! Thanks for sharing!
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LOVE this post! LOVE that she’s happier and more secure!! :) She’s adorable!
That is great! So glad that you have been given some unicorn tears!
Kate @ Songs Kate Sang´s last blog post ..Picnics in the Park – Leila and Harper {Songs Kate Sang Photography}
Ok, so I have been reading your blog for a while and missed the CP diagnosis.
>head to desk<
Having said that – super cute pics of your girl! Thanks for sharing,
Caryl
Crying unicorn tears for you! So awesome. What an adorable little water skiier :)
mel @ the larson lingo´s last blog post ..Ultimate Blog Party 2012 + A Giveaway
I love this big deal kind of news! Awesome!
this is GREAT! I love seeing these pictures and hearing the amazing words behind it…it’s amazing what adaptive equipment is out there right now!! I work with young children with Autism, and I am amazed with the results when you find the “right fit” for them in a piece of equipment!! Whether it’s a weighted vest, squeeze machine, hug vest, vestibular swing, etc!! :)
God bless you & your sweet daughter!!
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Finally getting caught up with some blogs. Had to come here first. Jill looks absolutely adorable in that vest. So glad you found something that helps her and her confidence. And praying she continues working towards those first steps. hugs to you all
Robbin´s last blog post ..HAPPY BIRTHDAY, DANIELLE
awesome — love that there is something to help your little cuttie — its a very big deal indeed!
and before you even mentioned she looked like a water skier – i totally thought that!
xoTiffany
She is such a gorgeous little girl! I am so happy for you that the vest is working out and I sincerely wish her and your family the best in the future x
Chelsea´s last blog post ..Early Morning Ponderings
hooray for jilly!! this makes my heart sing! god is good, and her vest is too sweet!
elijah has autism and wears a vest, only for half an hour at a time…when he really needs to focus. the pressure calms him, and he is able to benefit from therapies more when wearing one:)
funny, how a little vest we never dreamed of can make the lives of these little sweeties so improved!
#praisejesus
love you!
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That is just so so fabulous!!!!! And Jilly rocks that pink vest like no one else!
Yeah! I love this post! i have CP. Luckily, a mild case. I grew up with braces on my legs and regular physical therapy. I didn’t shake, but I had my own sets of challenges. Just wanted to let you know that because I had a Mom, like you, who bent over backwards for me. I am a happy, healthy, mom of 2 today. I got stringer and healthier as I grew up. Eventually I didn’t even need braces or PT anymore. Keep doing what you are doing even if at times she hates it! She will grow up to thank you one day, I promise! Good Job Mama!
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VERY COOL! Good Job Jilly!
She looks so much like Henry to me in that second picture…
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Thanks for this. Its nice to see positive stories about other people that are going thru similar things as we are. While our daughter doesnt have CP, (they still dont know what she has) the therapist just ordered one of these! I cant wait!
Hi, thanks for sharing this! I’m getting my son one and trying to see colors. You pictures are helpful (although I’m not getting him pink lol). Have a good one.
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