Help Me Feel like a Rockstar!

And Just a Bit More About Me

At 3 days old, Rylee’s heart stopped beating 10 minutes after getting to the ER, and they did CPR for THREE HOURS, the longest 3 hours of our lives. They almost gave up on her multiple times. The ER doctor did. He told us she wasn’t going to make it. The neonatal specialist just couldn’t do it though, which I am forever grateful for. That woman will always stay with me in my heart.
Rylee is diagnosed as Spastic Quadriplegic, meaning all four extremities have tight muscle tones. She also has a hypotonic core/trunk, meaning she has no strength or control in her abdomen and mid-lower back. This is why she is still unable to sit up unassisted.
She first started seizing the day we almost lost her. But she stopped before she left NICU and we thought she wasn’t having them anymore. We were very wrong. In July 2021, she had her first seizure since NICU that included convulsion. We had already noticed some unusual behaviors, throwing herself forward, stopping anything including crying and staring blankly.
Rylee has since had multiple types of testing and imaging done. Even genetic testing. She does have a mutated gene “of unknown significance” that we will have further testing done in August for, including both parents being tested. This mutation could possibly be the reason for everything, the epilepsy, the event that happened at 3 days old, the CP, and developmental delay. Or it could not be significant and we will never know why this happened.
We do know that she has abnormal brain waves every 10 seconds, which is a lot, like A LOT. Her epilepsy is classified as intractable, which means medication resistant. She will not outgrow this, and she may never have a seizure free day. She currently has 10+ a day. She actually has multiple types.
She has only had 3 focal seizures that became tonic clonic, so convulsions are rare for her. Rylee takes 3 seizure medications. Her triggers are hunger, being overtired, and extreme fits of crying.
She won’t outgrow her seizures. There is a chance she never walks, and/or never talks. There will unfortunately come a time where she plateaus in her functioning, and that will then be how she remains for the rest of her life. But my warrior has already beaten so many of the odds her care teams have given her. I know she will continue to do so.