Lilly failed both hearing screenings in the hospital when she was born, and we were told not to be concerned. However with years of experience with infants I knew this was no ”vernix.” We were able to see the audiology team at Children’s ENT two weeks later and were told before she was 3 weeks old that Lilly had a profound sensorineural hearing loss. At 7 weeks old, Lilly received hearing aids and so began the challenge of keeping those little suckers on her head and ear molds in her ears!
And then it all sped up; it seems like a blur now. AIDB (Alabama Institute for the Deaf and Blind) assigned us a case manager who did an initial screening which confirmed other delays. As a result, she assigned to us a physical therapist to go along with the speech therapist and, of course, the audiology team we have come to know and love at the HEAR Center. We saw a genetics specialist at UAB, a neurologist, an ophthalmologist and, of course, Dr. Woolley (a.k.a. the Guru, big dog, head cheese, our hero ...) Lilly even began supplemental therapy with the Bell Center to try to close the gap in her gross motor delays. CT, MRI, Muscle Biopsy – more bad news. We felt like we were drowning – sound familiar?!? It felt as if the not knowing why and not knowing what to do were the worst.
Causes were sought out; CMV was the culprit for a while so we went to a CMV clinic. Results were inconclusive; she had CMV, but not congenital CMV. After a muscle biopsy, it was determined that it was Mitochondrial Disease that caused abnormal white matter in the brain, low birth weight (4.15 lbs) and congenital hearing loss.
But then things got better, as they always do. Lilly continued to make progress with her motor skills, just at her own pace. Pilot caps kept the hearing aids on! She made it into the 10th percentile for weight on the growth chart! (woo-hoo!) And the decision for cochlear implants was made (a double-edged sword but finally a decision!)
There was a battle for the insurance company to approve the second surgery, but thanks to Papa Jack, it was able to take place on a very lucky Friday the 13th. It’s been almost 2 months since that activation and her language development is astounding!
Lilly identifies animals and their sounds, practices the Ling 6, loves to read books (identifying even non "Learning to Listen" items), she crows like a rooster and growls like an Auburn tiger! She can say more please, bubbles, Mama, Daddy, Nana, Katie, Pop, doggie, eat, hot, hat, up, ball and something new every week! Oh, and Lilly LOVES to sing!
Our journey is not over, but we now have a stable vehicle to travel in! We are still waiting for more results of the biopsy that determined the abnormal mitochondria, and we will then visit a specialist in Atlanta. Although Lilly wears custom splints, she still prefers to “cruise” rather than walk. And the new tubes Dr. Woolley gave us will hopefully ward off any other ear infections.
Wow! All this happened in less than 2 years. It sounds crazy when I type it all out. The tears of sadness and heartache were definitely worth the tears of joy and amazement. I look forward to meeting you in the waiting rooms!
Written by Lisa, Lilly's mom