Home

Care for Colbie

“But I can see clear, when looking at the mirror,
saying God made me just right. “

– “I Love Me” by Meghan Trainor (Colbie’s favorite song)

Colbie’s KiF1A Diagnosis
I Care For Colbie T-Shirts!
Donate to Help Find a Cure
  • Blessed, Not Balanced
    I am so blessed, but I also I believe it’s okay to say “it’s hard” and still be grateful and acknowledge that.  I’ve learned a lot in less than a year since Colbie’s diagnosis. A lot about genetics, rare diseases, disabilities, therapies, neurology, insurance, etc. More than I ever thought I would need to. Honestly,Continue reading “Blessed, Not Balanced”
  • My Colbie Lies Over The Ocean
    When Colbie was an infant all 6 of us would sing our own rendition of “My Bonnie Lies Over the Ocean” with Colbie’s name inserted. “Bring back, bring back, oh bring back my Colbie to me, to me…” It was simple and fun, but I can’t sing this song anymore without getting teary eyed. WhoContinue reading “My Colbie Lies Over The Ocean”
  • One(ish) in a Billion
    The other day, another KIF1A mom and me texted back and forth about everything from the pathetic current condition of our hair to the fact that our children may never walk. These jumps in conversation are normal for us. For the past few months, we have shared so many concerns, reached out for random advice,Continue reading “One(ish) in a Billion”
Colbie has been making leaps and bounds in communication and talking with approximations, but even still, it can be hard for her to get out what she wants to say. When she’s tired, she especially gets a little antsier and her words and signs get mixed up. I believe she’ll continue to learn more words and am so impressed with how much she’s “saying” these days, but we have scheduled her AAC device evaluation for next week to request a speech device which would help her to select words & pictures on a screen. The other challenge here is also needing the motor skills to do this. Other options are eye gazers, but when you have vision concerns, this isn’t always a better answer. So, her communication specialist will help choose the best device that she can use with supportive textures to help her fingers select the image she intends. This doesn’t mean she will stop learning signs or words. It just gives her another form of communication and again helps with hopefully avoiding unnecessary frustration for her. As her mom, I can often guess what she wants and how she’s feeling pretty quickly, but we can’t expect everyone to know that. It feels a little overwhelming to sign up for one more thing to keep up with, but I have only heard good things and I’m hopeful she will love it. 💗 Who says you can’t wear a sock under your chin? Working on “on and off” this morning and I’m loving every little bit of her desire to be independent in any way she can be. 💗 Sneak peek at our upcoming fundraiser! Bet you can’t guess which local restaurant is showing some love to our girl and @kif1a! Local Athens/Oconee peeps, save those ice cream cravings for 9/24! ❤️ Standing with support AND stacking (well, un-stacking) shapes! 🙌🏼 My aunt and talented maker of the most adorable wooden toys at @twigandbrush sent Colbie these cute cats! 💗Perfectly sized for her little hands, which helps her keep a good beat of course! 😉 One of Colbie’s favorite things to practice. As hard as it is for her to control many things, I’ve always been so impressed by how well she can blow bubbles in the pool or bathtub. 🙂 Colbie loves book…covers 😉 and taking things out (not putting them back in). So we “read” like this often, haha. But it makes for great high-knee exercise too, so whatever works! (Scroll right to see the aftermath) 📚 “Hi!” from Colbie! 💗☀️ This is the face of a girl who wants a “ba” (bath) instead of a nap, but definitely needs a nap more. 😉 She’s perfected the bottom lip pout. Same girl was sound asleep not long after this photo was taken. 💗 While challenging at times, Colbie finding her voice and speaking up for what she wants is something to celebrate too.

About Colbie

Our Girl

Born in April of 2019, Colbie has been the brightest of lights in all of our lives. She is happy, determined and keeps us all smiling and laughing often. Colbie LOVES music, water, and everything possible about being outside. Most of all she adores her 4 older siblings and they feel the same way about her. We hope Care for Colbie helps raise awareness & funding for Kif1A research, helps other parents, but also this is just a place for us to keep our friends and family updated as we face whatever is to come for our sweet girl. We will NEVER stop cheering her on.

Have questions, suggestions, or want to help share our story? Please email!

Random videos featuring Colbie and our family: Our Beautiful Mess on Youtube

Contact:
CareForColbie@gmail.com

Follow and Support:

https://www.youtube.com/channel/UCUYPKe1rDwJaP6LhMleLz4A