Elle is almost 4 months old and I am sorry to admit that I have neglected to share updates, but I was waiting. Waiting to learn more about her hearing.
Since the last time I shared she had another ABR and it was a good appointment. The audiologist felt like she got a final reading and we won’t need to do anymore ABRs. Praise the Lord!
Here is what we know. Elle has mild hearing loss in the left ear and is right on the line of normal on the right ear. That means we will wait until she is mobile before we put a hearing aid on her left ear. When she is old enough she can decide whether or not she even wants to bother with the hearing aid. That is how mild her hearing loss is. She could potentially get by without any intervention at all. That’s really awesome, but it gets even better.
I was waiting to share this news because I really wanted to get the genetic test results back. Once that came I would be able to exhale. I called the hospital last week just in case it was ready, but it wasn’t. It took six weeks and when I finally got that call it was really bad timing because I was on my way to pick up SJ from school. I couldn’t wait any longer though I wanted to know. I was assuming it would be a really short phone call confirming that Elle’s hearing loss is the same as SJ’s, but it wasn’t. As I am driving along I was trying to take in all this mind blowing information. At the stoplight I grabbed some eyeliner and scrap paper to try to jot down some of what she was telling me.
The geneticist said SJ’s genetic mutation is typical severe to profound deafness and Elle’s is mild. I couldn’t hold back my exuberance. That’s great news. I exclaimed So it should stay mild? and she said yes. I could tell the geneticist on the phone was glad that she was able to rejoice with me. I’m guessing she has to make a lot sad phone calls when it comes to DNA results. I could hardly control myself I apologized for being so dramatic and I told her I had been expecting it to be different. I didn’t even know that it was possible for them to have two different forms of genetic hearing loss.
She said the only way this is possible is if either the mother or father have hearing loss. She said it could potentially be so mild it was never diagnosed. I jumped in before she even finished. That’s me! I know it sounds weird to be excited to claim responsibility for my child’s genetic mutations, but I have had trouble hearing specifically on my left side for a long time. Even on the blog I have talked about how I can’t hear high pitches. I have written about my self diagnosis for Meniere’s disease, or how I went to have my ears checked again when I was pregnant with Elle. Except I never felt like the Doctors took me seriously. I never stood up for myself and demanded answers or treatment. When the last audiologist never called me back I just dropped it. Yes, my hearing loss is a nuisance, but I manage. You know how it is with moms. We take care of everyone else first and our own needs get put on the back burner and forgotten.
So basically for the past 4 years we have assumed that J and I were both carriers of hearing loss because we can hear, but in actuality J is a carrier and I have what is called autosomal dominant hearing loss. I THINK. Don’t quote me on all this. I still have a lot to learn. When I casually mentioned to my mom that I am not good at genetics in the same way that I am not good at math. She plainly said “Understanding genetics is like rocket science. Don’t feel bad.”
I do hope to learn more when we meet with our geneticist in a couple weeks. I didn’t want to wait that long to share this news though. It’s such a huge relief to me. I had pretty much put my whole life on hold, not in a way that I resented, but my brain did not have space to be creative, work on blogging, photography or any additional endeavors. I was waiting to see how much Elle would need from me. I was waiting with bated breath to find out whether or not she would loose the hearing that she does have. No one other than God himself knows what each day holds for any of us, but at least for the most part I can rest now knowing that Elle’s hearing loss is stable and she will need very little intervention in comparison to having cochlear implants. I would have been fine either way, but this brings me so much peace. He always knows my needs.