Hey ya'll!
As most of you know my sweet daughter was diagnosed with epilepsy a little over a month ago. Since that time, she has had a very rough time. She was admitted into the Children's Hospital in Birmingham for 8 days. The EEG (test measuring brain waves) showed she was having over 250 seizures in a 24 hour period. I *knew* something was horribly wrong. Luckily, the doctors there are some of the best in the country!
They discovered that Kaylynn has a very high white blood cell count in her spinal fluid. It is not, however, elevated in her blood. This left the geneticists, neurologists and even the infectious disease teams stumped. They have never even seen anything like it and are certain she has a genetic disorder and/or mutation causing her to need a very high dosage of seizure medicine to slow them down. She is now on 3 different seizure medications.
Onto the good news. She seems to be doing a little better now. She had to have her long hair cut off because it got horribly tangled after the massive amount of testing she went through. She is still having a hard time with the medicine's side effects and isn't back in school yet. We have a slew of doctor's appointments in the upcoming week and then many, many follow-ups. We also have to face the fact that there is another scary diagnosis around the corner when the genetic testing results are back.
This has changed our lives, for sure. I will never take another minute with my children for granted. You just never know what tomorrow may bring. So squeeze those you love extra tight.
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Gotta love that cheesy grin. These are the pictures that inspired the polish. |
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Wearing her tutu and watching Alabama play. Smart, smart girl. |
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Isn't she a beauty? |
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Kaylynn and Kyler playing dress up. LOL |
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She makes a mess but has so much fun doing it! |
Now for the polish part of this long-winded post. I have a sweet friend in a nail group that makes gorgeous nail polishes. She used Kaylynn's pictures and her love of tutus and playing "ballerina girl" and all things pink to create a Limited Edition polish aptly named "Ballerina Girl" to help our family out during this very tough time. Below are bottle shots of this stunning polish! But you gotta keep scrolling down to see the beautiful personal touch being added by Laura and her sweet mama!
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Bottle shots before the big surprise at the end of this post.... |
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Close up of the polish. This is a pink shimmer polish with different colored pink glitter. It can be worn alone or over your favorite polish to give it that pretty pink sparkle. |
They are hand-drawing the labels for Ballerina Girl. Does it get any cuter than these???
You can purchase your bottle of Ballerina Girl by clicking here :-) Don't forget to check out the other stunning polishes Laura has made while you are there. Even if you can't afford to buy the polish I'd be honored if you would go over to Laura's Facebook page (
click here) and thank her for helping out our family when we need help the most. $5 from every bottle of Ballerina Girl is being donated to my family directly through paypal. Every dollar is helping so much. We were able to buy the medical alert bracelet with the first donation and will be able to get her back and forth to the 3 appointments this week without worry. I can't thank everyone enough for the kindness, love and prayers sent our way.
If you have any questions, concerns or just wanna show my Ballerina Girl some love, leave us a comment. I'll share them with Kaylynn :-) We will adding a new blog post with swatches of the polish on Kaylynn's nails and mine when our bottle arrives. Stay tuned for that. Thanks for stopping by.
Awwe, give KK a squeeze from Aunt Elise! You know we are still all praying for her & are here any time you need us. I can't wait to see y'all very soon! Love you girl!
ReplyDeleteWhat a beautiful little girl you have there! <3 Sending love from New York!
ReplyDeleteI read this and want to be sick.... She refuses to even come to see her kids... Not even a call... She so had all of y'all snowed.... It's OK... Hell is hot and she will bust it wide open.
ReplyDeleteI read this and want to be sick.... She refuses to even come to see her kids... Not even a call... She so had all of y'all snowed.... It's OK... Hell is hot and she will bust it wide open.
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As the majority of you are aware, my beloved daughter has been suffering from epilepsy for the past month or so. She was hospitalized for 8 days in the children's hospital just yesterday. The EEG readings indicated that she had suffered over 250 seizures during a 24-hour period. I knew that something was terribly wrong and fortunately my fears were confirmed when I discovered just how amazing the staff at this clinic were! Wedding Invitation Video
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