Me and my girl ❤️
Keelie has struggled with school since first grade. Fine motor skills were especially difficult for her. For years I suspected she had dysgraphia. Keelie would grip her pencil so tight, her hand would shake.
To help fix this, we had her learn how to sew, we used thumb tacks and had her do pokey-pin activities, we bought special pencils and grips, and we even took golf pencils sharpened both ends and cut them in half so she would have to use a proper grip. Nothing seemed to be working.
When Keelie was in sixth grade, she still had to concentrate on letter formation. It took her a really long time to write anything. She avoided it whenever possible, using technology as a crutch.
Then, I watched her hands shake as she put the leash on our puppy. Fearing the worst, I asked our pediatrician about it.
After doing a few tests that looked something like a police officer testing a drunk driver, Keelie’s doctor ordered an MRI. Our worst fear came back negative, it wasn’t cancer, but Keelie’s cerebellum was smaller than normal.
But what did that mean? We had no idea. We were referred to a neurologist and a neuropsychologist for further testing.
The doctors asked about Keelie’s early milestones: when did she sit up? Six months old. When did she talk? First words around 10 months old. When did she walk: 13-months old. Some of her first steps being on the beach in Cancun. She hit all of her milestones within normal ranges.
Then, in December 2018, Wade and I held each other’s hands as the neurologist went over the test results in detail. Keelie was either born with a smaller than normal cerebellum and had something called Cerebellar Hypoplasia OR she was born with a normal-sized cerebellum and it was deteriorating. In that case, it was Cerebellar Atrophy. Neither of which could be fixed or cured.
Things went blurry for a while discussing fer future and words like, “group home” were mentioned. I felt like I was going to vomit. My whole body started shaking.
If it was Cerebellar Hypoplasia, Keelie would continue to struggle with cognitive, gross, and fine motor skills as everything goes through the cerebellum. As she gets older, these symptoms will become more and more apparent when compared to other kids the same age.
If it was Cerebellar Atrophy, it looks like Alzheimer’s where she would eventually forget everything, including how to breathe. The prognosis with Atrophy is fatal.
The neurologist said, “The only way to find out exactly what we were dealing with, is to compare MRI’s, but there needs to be about a year in between to get an accurate comparison.” The earliest we could do a second MRI was June 2019.
We spent the next six months scared to death. I went into research mode and googled Cerebellar Hypoplasia. It’s so rare that it’s difficult to find much information. Most of the CH information out there has to do with cats. I found a parent support group on Facebook. As I read the other parent’s stories, with children whose symptoms are much more severe, (some cannot walk or talk), I realized just how lucky we are.
Wade took a different approach and decided he needed to get healthy for our girl. He started eating healthier and working out. Then, we discovered a tumor in his stomach. I spent the next few months scared that I was going to lose both of them.
Keelie had her second MRI at the end of June 2019 and THANK GOD, it came back unchanged. We went back again in June of 2020 for a third MRI and again there was no change, cerebellar atrophy was finally taken off the table. Wade and I both felt like we could breathe again.
We’re still not sure what Keelie’s future will look like. There’s still more testing to be done, but for now, we are counting our blessings. As rare as her condition is, she truly is a one in a million girl and such an amazing kid.
Here are 10 things Keelie wants you to know:
- If you are lucky enough to know Keelie, you know this girl has a heart of gold. She is one of the kindest, sweetest people you’ll ever meet.
- She is smart. Smarter than most people will give her credit for. She needs extra time, but her answers are almost always accurate.
- When talking to Keelie, give her a few extra seconds to process and respond. This will seem awkward at first. Have patience. (I noticed that she looks at me to answer for her when someone asks her a question, which means without realizing it, I must’ve gotten into the habit of answering for her…ugh)
- Keelie loves animals, especially dogs. She has been training our dog, Caroline, at 4H and loves it. When she grows up, she wants to work with animals.
- Keelie is shy at first, but once she is comfortable with you, she will open up.
- Keelie can NOT ever drink alcohol. Alcohol affects your cerebellum. One shot for Keelie would have the same effect as 5 shots for the normal first-timer. We’ve told her that she has an allergy to alcohol to help her avoid it.
- Keelie is really good at hiding her emotions. Things that you think don’t bother her, do in fact, bother her quite a bit.
- Keelie is an ‘old soul.’ She loves to knit and sew. She likes to make pajama bottoms, blankets, pillows, and dog toys.
- Her hands started trembling in 2018 which prompted the first MRI. Her legs tremors started in March 2020. Both fine and gross motor skills are very difficult for Keelie.
- While there is no cure and no fixing this, we are one of the lucky ones. We are focusing on the positive. ❤️
This post was written with Keelie’s approval. (Links are attached in the post for clarity)
*For more information, click here: Cerebellar Hypoplasia
Rare Disease Day February 29, 2020
7 thoughts on “My One in a Million Girl”
I love that you posted this “with Keelie’s approval.”❤️ Thanks for sharing—not something most are aware of, let alone dealing with.
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Thank you for sharing your life here, Nicci. Life is so busy, and I feel blessed to know a bit more about your family each time you write. Knitting, sewing, crochet…great therapies, and if Keely ever wants to I would love to sit on my porch and knit with her. Or show her my messy quilting studio. 😉
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Thanks Brenda! I’m sure she’d love that!
Keelie is a beautiful, kind and loving girl who I adore. Much love to you my darling Granddaughter 😘
I would love to talk with you as we have had a similar journey with our son
I’d love to talk with you! This is a tough journey to navigate, especially when you feel so alone.
Nicci I would like to email you but I think I lost your contact information