She's my Elleeanna

Born on Valentine's Day of 2009, Elleeanna came with unimaginable challenges. At first, when she was 11 months old and still unable to sit up on her own along with not even trying to make any sounds, I became worried. At her check-up, I asked the doctor, almost every visit until the doctor finally referred her to an ENT, little did I know that was just the beginning of our long journey. The test showed some abnormality and she needed further testing.

At the time of her 2nd birthday she weighed 16 pounds and was barely 30 inches long, WIC referred us to a GI specialist. Weeks and visit later she was diagnosed with Failure to Thrive, meaning she didn't grow at the same rate as other babies her age. That only answered one question, but why wasn't she talking or making sounds, not crawling or standing barely unable to stay awake for more than three hours at a time. I was frustrated and scared, I felt like the worst mother in the world, because at the time I was also battling my sons tiring Fever condition that put him to sleep for five days every month. I was pushed back against the wall with both of them even though I love them so much my heart hurt to have to put them through so much to figure out how to fix, live, accommodate to their condition. Elleeanna spent the next year between ECI and therapy to specialist and weight checks, by the time she turned 3, she weighed 22 pounds and was 30 inches tall. It was when I got the news, hearing scans showed Bilateral Sensatoral Hearing loss, more severe in the right ear. Immediately she was fitted for hearing aids in both ears. I felt a little relieved that now she was at least able to hear even if it was just a little bit (signing was taught to us) but not everyone in the family was able to to that. Watching her face light up like Christmas lights, her arms flapping around with excitement her dad and I crying because of how she looked so happy to hear everything.

A few years later, Elly was doing so well with gaining everything that she was delayed in expect her growth. She also had a weird thing that I believed was just her being sleepy from tiring herself out, but when teachers contact me more than three times about it. We returned to another specialist my daughter was beginning to scare me. I wanted nothing more than to have a healthy baby, but her mystery health seemed adventurous. I was told that her sleeping all the time, was because her hearing aids weren't working and she would benefit more from a Cochlear Implant. Setting up for that, I nervously signed the papers, and a few weeks later she went under for her first major surgery.

Now at 10 years old, she is finally the size she should be, delayed has gotten better, but there is still one unanswered question. How does she randomly fall asleep?

Her pediatrician referred her to a neurologist and cardiologist hoping maybe that would answer it. Weeks of tests, sleep studies, and scans gave us yet another answer, but this one answer EVERYTHING she has been through her whole life.

A final diagnosis of Short QT syndrome, a heart condition that affects the growth and brain nerves. It was the same condition my brother died from just weeks before her final test was done. After telling the doctors about his passing it gave them the clue to put her a heart holster for two weeks.

On July 13th I buried my brother and received to heart-crushing news my daughter has a possibly deadly condition if not monitored right. My Elleeanna has changed my world and now we know how to manage her better.