Hi, friends. I know I haven't added anything to this blog in awhile. Frankly, I didn't think I needed to. When we needed the help of our friends and family - and perfect strangers - this blog was the best way to keep everyone informed of our story and our progress. Plus, everyone was able to see Izzy's stylish choice of hearing aids once she received them. Randy and I are still in awe of how great of a response we received, and we are still thankful for the generosity of so many.
Since receiving her hearing aids, Izzy has made incredible progress. She has never had an issue wearing her aids. She even asks for them. Now, she is almost able to put them in by herself, and she is learning how to care for them on her own. When other children ask what they are, Izzy quickly, and almost proudly replies, "Those are my hearing aids." She has no shame. Her biggest improvements have come with her speech. Izzy has received speech both in school and through private therapy. While she can still be somewhat difficult to understand during conversations, when focusing on specific sounds, she nails them. Her brain is beginning to differentiate among the sounds that she had thought were the same, and she sometimes corrects herself. We are so proud of her!
We had new tubes and an adenoidectomy since getting the hearing aids, because Izzy still develops ear infections and she retains fluid, specifically on her right side, which is the ear with the greatest hearing loss. Izzy bounced back from this procedure very quickly, and things seemed to be going very well.
So, when things are going well, how can we complain? Why would we question if there is something more we can do? We were seeing progress. Feedback from her teachers and doctors suggested that we were doing exactly what Izzy needed.
Well, then there was this:
Pardon my ignorance, please. I'm new at this. Izzy is my only child. I've never dealt with any sort of hearing loss situation before. How am I supposed to know what she is experiencing without her telling me? How am I supposed to know what I can do to help her without the guidance of professionals? Randy and I have followed doctors orders. Perfectly. So, why, did I have to see this video shared by a friend on Pinterest to have any idea of what my child's hearing loss might sound like? Why did no other professional provide my husband and me with this information? Why did I have to read in an article that a cochlear implant could be the best option for people with Izzy's type of hearing loss? I won't lie. This made me upset. And it made me feel stupid.
It simply comes down to the fact that parents are the best advocates for their children. I simply needed to realize that and start demanding better treatment and care for my daughter.
So, when we returned to our "primary care" otolaryngologist and he suggested new tubes because she still had fluid behind her right ear drum, I asked about a cochlear implant. I told him about the video above. About how I wanted to be more proactive with her care. About how I wanted another opinion. I asked for a referral to Vanderbilt's Monroe Carrell Children's Hospital where they do more cochlear implants on children than anywhere else. He didn't seem upset by my request. We returned later to have a hearing test, and a few days later I received the call with our appointment at Vandy.
Our first visit to Vandy was unlike anything we have ever experienced with medical professionals. We really had no wait time, considering the hour time difference really messing with our concept of time. First stop was with the audiologist. Izzy's hearing test was long and tiring for her. Afterwards, we were directed to our new otolaryngologist. Again, no wait. This man, who does not do cochlear implants, was kind enough to call his partner in to speak with us after seeing Izzy's audiogram. We had to wait on the partner to come into our room because he was in surgery, but while we waited, our new doctor asked plenty of questions. Including one that I'll never forget. He asked what had taken us so long to get there. Of course, he was more tactful. My response, "We've been doing what our doctors were telling us." Izzy had made progress. Izzy was hearing better. Obviously, though, our previous treatment plan was much more conservative than what the doctors at Vanderbilt would advise.
We left there with an appointment for new tubes and an explanation why those tubes are important. We also left with a plan to begin our journey for cochlear implant candidacy. First up, during the PE tubes surgery, was imaging.
Before Izzy went back for surgery, our doctor comes to tell us he looked at the CT. While he only saw one view instead of all three, he noticed something very telling. Izzy has an EVA on the right side and possibly on her left, which, as we found out as soon as the doctor left us, can mean lots of different things for what Izzy could possibly face in her future. For now, it means that Izzy cannot participate in any full-contact sports like soccer (we played that last year), tumbling (we were enrolled through next spring), and the like. A head injury could cause the EVA to burst, which would most likely lead to total hearing loss. Our doctors at home said Izzy's sensorineural hearing loss was just congenital. Never did they give any potential explanation for what could have been the underlying problem. Never did they mention an EVA. And most certainly, never did they allude to other parts of Izzy's body being compromised by some sort of genetic disorder.
It goes without saying that Randy and I got more than we bargained for by asking to go to Vanderbilt, but we are so thankful to have possible answers, even though we still have a long road in front of us before we have definite answers. We return in October for a full report on Izzy's CT scan and more hearing tests to continue our cochlear implant candidacy. Soon, we intend to have genetic testing done so that we know what our baby will likely face.
I admit that I continually feel like a fool. I feel like I have failed Izzy so many times already in her short life. Where would she be if we had truly discovered her hearing loss while she was an infant? This is where we are, though. Trying to correct problems, habits that have already formed. Trying to move forward the best we can. Trying to figure out what lies ahead so that we can prepare for it now. I have a feeling we are in the best hands, and Izzy's life, as well as ours, will change dramatically soon enough.
Is this the worst thing that could happen? Absolutely not. Randy and I both say over and over that we are in a much better situation than so many others. Going to Vanderbilt is a reminder of that. So many children suffer things that I cannot possibly fathom. For their parents, I ache. Together, though, I imagine that we share similar goals for our children. Parents want what is best for their children. We want to know that we can trust those who are responsible for our children's health care. We want to know that there will be better days ahead for our children.
While I realize my writing this blog is more for myself than anyone, I do hope that somewhere out there is someone who gets some benefit from reading our story. More to come...
For now, just look at my baby. :)
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.