Hearing

Today we had Jaylen's ABR test (audio brainstem response) which is a natural sleep test that took about 3 hours to complete. We were not surprised to discover that Jaylen is, in fact, hearing impaired. The bottom line is that Jaylen has mild/moderate hearing loss in both ears and will be fitted for his first pair of hearing aids in June.

We were very surprised to learn that his hearing loss was not considered more profound, since he rarely (if ever) responds to any sound, even very loud noises close to his ears. What is difficult about this is that he SHOULD technically be able to hear conversational speech, but is not responding to it. At this point, this means that the concern is less about his ears now and more about the brain. Basically hearing aids should make the full spectrum of sound available to him, but that won't necessarily mean he can process/receive sound properly. The audiologist confirmed that the hearing loss was likely caused by gentamicin poisoning (toxic levels of the antibiotics he was given at birth.)

We are still processing this new information since, as I already said, we can clap or shout right next to Jaylen's ears, and he usually won't even blink. We are also trying to wrap our minds around what it means to receive sound, but not be able to respond to it. This new discovery puts significantly more stock into the brain MRI. We were originally undecided about whether or not we were going to do pursue that test,the but after today, I would have them to the MRI tomorrow if they would let us.

Without a good look at his brain, there is no way of knowing what is causing the disconnect between receiving some sound and his ability to startle when appropriate, or turn toward a loud sound or voice.

I am exhausted and confused. I had prepared myself for the "worst case scenario" and was feeling excited about
moving forward with some answers and a plan, no matter what the diagnosis was. I felt confident that we would be able to work with any challenges that we faced, and that there were going to be awesome and exciting things that we wouldn't get to experience with a hearing child. I felt prepared to tackle the challenges and move in a clear direction. The only thing I was really unwilling to tolerate was more unknowns... Surprise! We know less now than when we started. Well, it feels that way at least.

The good news is that none of this surprises the One who created Jaylen. Each of Jay's days has been written out since the beginning of time, so I am praising the Lord that He is neither shocked by this (nor as irritated) as I am. For anyone willing to fall on your faces in prayer, we would ask that you pray specifically for quick answers. I don't think there is anything wrong with asking God to do a miracle... I'll take one for sure! More than anything though, I am asking God for provision no matter what his health situation is. I don't ever want anyone to think that God failed if He doesn't choose to make Jaylen hear or process sound the way you and I do. Perhaps the true miracle would be loving him just the way he is and enjoying all that he will teach us through the way HE hears and processes.

That being said, I am praying for sheer speed in receiving answers. I can take whatever they tell us. God will provide all the Jaylen (and we) need. I can let God stretch me, and I can trust that He loves Jay even more than we do. But Mama needs some fast answers, because I can do a lot of things, but waitin' ain't one.