Connecticut Walk4Hearing

The Main Walking Dinosaur!
The Main Walking Dinosaur!

Isaac's Walking Dinosaurs

Our story begins on September 19, 2011. Isaac was born a healthy baby-boy who passed his newborn screenings fully. We were elated and thrilled to become a family of four, as Isaac joined his older brother, Tristen. During Isaac's development, we, like most parents, compared his development to his older sibling. While they are entirely different children in all ways, Isaac seemed to speak at a later age, and was more difficult to understand than his older brother had ever been. We spoke with the pediatrician about this and Isaac was referred for an early intervention screening right before his 3rd birthday. We completed this screening and were told that Isaac was showing some deficits with his speech in regards to his articulation, but that he didn't have enough of a discrepancy at that point to warrant any services. We were told at some point in the future he would likely receive speech services when his deficit grew. Being an educator myself, I didn’t agree with the philosophy of “let’s wait until there’s a big enough gap before we do anything.”

Being fortunate enough to be a stay-at-home parent with Isaac, I worked with him daily on all things related to his learning. He attended preschool classes, extra activities, and engaged daily with me to focus on improving his abilities. However, he still remained difficult to understand for people who weren’t around him on a consistent basis. However, at this point, never once were there any other signs that he may be presenting with a hearing loss. During the summer of 2016, we relocated from Pennsylvania back to the state of Connecticut for Jeff’s work. At this point, given the transition and continued speech concerns, Jeff and I made the decision to hold Isaac back a year, and send him to Pre-Kindergarten instead of Kindergarten. This turned out to be a blessing in disguise for what would become of the situation.

Seeing as how we transferred states and Isaac would be enrolling in a new school, he had to have a complete physical with our brand-new pediatrician here in CT (no big deal, we had these every year for his well-check). We took Isaac for his physical in August of 2016. During his physical, Isaac failed his hearing test (first time ever having a failed test). After a lengthy conversation with the doctor, and given his history and the fact that she didn’t know Isaac to well at that point, she recommended a full hearing evaluation at the children’s hospital. Jeff and I agreed that we would schedule the appointment and check this off the list of things we could rule out. The appointment was scheduled and we had a three month wait for it. Life went on as usual, and we hardly gave thought to the appointment…after all, how could Isaac have gone five years with a problem and we never picked up on it?

November 11, 2016 was finally here and Jeff, Isaac, and I set off for his appointment. We met with the audiologist ahead of time and gave a complete history of Isaac’s life thus far. I distinctly remember Jeff and I both saying, “we have no concerns with his hearing, we are just checking this off the list so we can rule it out.” After about a half-hour conversation the testing began. As Jeff and I sat behind Isaac and watched the testing unfold, within ten minutes, we knew that we were no longer “ruling something out.” Isaac did amazing with the testing, but started to make comments like “Can you make that louder?” or “What was that?” or “How come I don’t hear anything?” Jeff and I were in complete shock – how could we have missed this his whole life? After about an hour and a half of testing, the audiologists delivered the news that Isaac had a neurological hearing loss. We would need more testing to determine the extent of it, and several more additional appointments to rule out other issues that could be associated with this type of loss.

Over the next weeks, I can’t even count how many appointments we went to – from cardiologists, to ENT’s, to eye specialists, to neurologists…it seemed never ending. Through it all, Isaac remained the amazing, little boy that he is and did awesome. His neurological hearing loss was confirmed in his right ear and the week before Christmas, he received his “blue machine” as he calls it, or his hearing aide. His left ear was labeled borderline and didn’t require an assistive device at that moment. For those of you who know Isaac personally, you know that he is my strong-willed child, who isn’t going to do anything he doesn’t want to do. As you could imagine, I was expecting the worst when they went to put in this “annoying machine” in his ear. To my surprise, the first time his machine went in, he looked at us and said “I can hear so much better now Momma!” To this day, he has never given us an ounce of trouble with it, asking for it as soon as he wakes up and taking it off right before he starts his bedtime routine. Throughout this process, Isaac’s new school has been wonderful. He immediately began receiving speech therapy every week and was fitted with an FM system to use, in addition to his hearing aide, while he is in his classroom.

There are still many unknowns that lie ahead of us. Isaac’s condition will not improve and will likely continue to deteriorate. We still have testing ahead of us and now doctor’s appointments have become part of our normal routine. His brother has also tested borderline for his hearing and will continue to be monitored as well. However, the amount of growth Isaac has shown in a few short months is remarkable. His speech therapist is shocked at the progress he has made now that he can accurately hear the sounds he had been struggling with for so long. He is an incredible little boy, who compensated so well for the first years of his life, and is now thriving as puzzle pieces are coming together.

We have spent the past five months, educating ourselves and learning as much as we possibly can about Isaac's diagnosis and hearing loss in general.  Throughout it all, we have realized how incredibly blessed we are, and want to help raise awareness for this cause that will be a part of us for the rest of our lives. The Hearing Loss Association of America (HLAA) Walk4Hearing increases awareness about hearing loss, helps to eradicate the stigma associated with it and raises funds to provide information and support for people with hearing loss. Since 2006, the Walk4Hearing has raised more than $12 million and has become the largest walk for hearing loss taking place in cities across the United States.  So this year, Isaac will be there, along with his team, Isaac's Walking Dinosaurs, to raise awareness for all people living with hearing loss.  We would love for you to join us and be a part of a team in helping to make a difference.  

Fondly, 

Jeff, Erin, Tristen, and Isaac Edwards 

 

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