The Waiting Game

Jesse has always loved music. He used to sing when he was a toddler and then started humming instead. I assumed he couldn't remember the lyrics to those songs. He also always wanted help saying prayer even though he was 4, almost 5.

I cried the first time I heard him sing a song and said a prayer on his own. Both happened within a couple of months of him getting his hearing aids. It was the first time I realized how much he was missing AND how blessed he is to be able to hear with his hearing aids.

I go back to those memories when I get news like we got over the course of a couple of months.

We waited six months to see the geneticist. We had our first appointment in April. The doctor, gave us the rundown of what he would be doing, why genetic testing is encouraged for someone with the unknown cause of Jesse's hearing loss and what our next steps would be. Then he asked what insurance we have. When I told him, he said, "Oh, Jesse's isn't on medicaid or CHIP? Well, then we need to get preauthorization before we can move forward with the lab work." I was SOOO MAD & disappointed! His office had SIX MONTHS to get preauthorization. He did go ahead and do a physical examination while we were there. By the time he was done I almost asked him to examine me. It was so neat to see what he pointed out. He said that Jesse's case is pretty unique between there being no genetic hearing loss on either side of the family & the rate a which Jesse's hearing deteriorated. The Doctor said based on some of Jesse's physical features, it looks like he his hearing loss is likely an Autosomal Recessive Syndrome. This means whatever syndrome he has was passed through recessive genes. We've gone it being one of over thousand syndromes to around 140. Then he said, "I'll see you in four months." and I was mad again. Hopefully, we can get labs taken care of in a couple of weeks. I made the mistake of going home and Googling syndromes linked to sensorineural hearing loss. I quit after about an hour. There are so many syndromes linked to hearing loss. Many of them are pretty scary! It made me so grateful to have a cute, happy, healthy, kid, who, for now, is simply hard of hearing! I have four months before I have to worry about any other health issues &/or struggles Jesse may have down the road. We're going to enjoy our Spring and Summer, giving as little thought as possible to the what might best.

Then, a couple of weeks ago, we found out Jesse had lost another 10 decibels of hearing in one of his ears. It's not much and it's in the lower frequencies which is "good" news. No biggie, right? Right? Yet, I cried, again. We were told to prepare that Jesse's hearing loss could be progressive. Even so, getting the news is still hard! More hearing loss is still more hearing loss.