The story til now...

I've been thinking of starting a "real" blog for quite awhile now. It's just one of those things that I've wanted to do, but haven't quite found the time for, despite propensity for getting myself stuck on the computer, doing much of nothing. For those that don't know the story, you can check it out at http://www.caringbridge.org/va/tessasears/

Here's a quick run-down:

Our oldest daughter, Tessa, was born in September of 2002. At the time, the were doing newborn hearing screenings. Tessa failed her newborn hearing screening on one ear. We were told it was likely "gunk" from birth. A month later, on Halloween, I took her back to the military audiologist, who did an OAE test and declared her to be hearing perfectly. I thought nothing of it for the next 9 months. We had so much stuff going on at the time. She was my first child and I never even considered that she might have a problem. When the pediatrician asked if she was responding to sound, I said "Well, I haven't really noticed it" but it was always brushed off. Once she was old enough to pull herself up in her crib (which she did later than most babies), I noticed that she didn't turn to me when I came in the room. We had recently moved, so I called our new pediatrician and asked for a referral for a hearing screening. She had that done in December when she was about 15 months old. They did determine that she wasn't responding well to sound, but her tympanogram was flat. In general, if the ear drum is vibrating properly, the tympanogram would make a "mountain." It's very strange because I remember that appointment quite vividly, even though at the time I seriously thought nothing was wrong. I remember the waiting room of the office and the audiologist. She suggested that Tessa had fluid in her ears, so I should take her to an ENT.

I went home and scheduled an appointment right away with an ENT named Dr. Para. He was a friendly guy. We took her in and he said she did indeed have fluid. He asked if she was saying any words and I couldn't think of much that she did say, but again, I didn't realize that she should have been saying words by that time. I just assumed I wasn't "understanding" her words. He called her fluid "persistent" fluid. Even though it wasn't infected, it was always there and likely affecting her ability to hear clearly. So, we had two options: We could get her tubes or we could wait and try antibiotics. We opted for the tubes. I distinctly remember Dr. Para saying "I'm 99% sure she'll be hearing well after this procedure." In the days after the tubes, I kept trying to pinpoint times that I thought she was hearing me. I wasn't sure whether it was supposed to be a "quick fix" or if it would take time for her to respond to sound. After a week or so of waiting for her to respond to sound, I called and asked to bring her back in because she wasn't responding well.

We saw the audiologist at Dr. Para's office. She was brand new to the practice and to the area. She tested Tessa's hearing in the booth and concluded that she still wasn't responding well to sound. So, she told us that we would need to get Tessa a test called an ABR (automated brainstem response). In this test, they would sedate Tessa, put earphones on her ears and electrodes on her head, and measure her brains response to sounds put through the ear phones. It's pretty much the definitive test for young children with hearing loss, since booth testing can be very subjective with the little ones. Tessa had her ABR in April of that year.

I remember sending Stephen in with her because I knew he needed to be with her for some of this stuff, though I so desperately wanted to be with Tessa. I also wanted to try to decipher what they were seeing on the computers. We didn't get the results for a few days...days that I was dying wanting to know what they found out. Why couldn't they just tell us?!? Dr. Para called us into his office and delivered the news that Tessa had a profound hearing loss in her right ear and a moderately severe to profound hearing loss in her right ear. When they test hearing, they measure varying frequencies at different decibel levels. Profound hearing loss means that one can't hear anything below 90dB. To Tessa, a lawnmower sounded like a whisper. Tessa was deaf. She could hear a little bit, but not enough to understand speech.

Since the audiologist was new to the area and mainly worked with adults, she really wasn't able to help us find out where to turn for resources. We were pretty much left in the dust, to find our own way. Thankfully, we had already had Tessa evaluated through the Early Intervention system and she was on the way to getting therapy through them. Knowing very little about hearing loss, we chose to buy Tessa a hearing aid and an FM system. The FM system consisted of a "boot" that fit on the hearing aid and a microphone that I could wear that would pipe my speech directly into her hearing aid. She would wear the hearing aid on her left ear...the one with the moderately severe to profound loss. Her audiologist felt that Tessa would benefit from a cochlear implant in her profound ear. However, there was some uncertainty about which level of hearing loss made a person eligible for an implant.

We took Tessa to see Dr. Schessel at CNMC. He was an ENT who supposedly implanted young children with cochlear implants. He looked at her hearing tests and concluded that she heard too well to be a candiate. I felt like we were stuck between a rock an a hard place. Tessa wasn't hearing well enough to benefit a lot from her hearing aid. She was making progress...slowly. She wasn't going to be acquiring speech anytime soon with the hearing aid. Only one of her ears was functioning well enough to make use of a hearing aid, yet she wasn't a candidate for a cochlear implant (CI). I was angry. Dr. Schessel recommended that we go ahead and do all the workup studies for the CI process, in case her hearing decreased. Then he could get her in for surgery quicker. A month later, she had a CT scan done of her temporal bones to determine if her hearing loss was coming from any structural abnormalities. She also had some bloodwork done to find out if it was due to any Connexin genes (there are a few genes called Connexin 26 and another number that cause hearing loss). It was determined that she had neither...no structural anomalies and no Connexin.

We went back to her audiologist and shared with her what we were told. She was saddened and felt that Tessa would benefit from a CI. However, she was new to the area and knew very little about any resources available to us. She suggested that we contact Johns Hopkins in Baltimore to see if they would consider her a candidate.

To be continued....