A bit of a new direction today but I hope some educational info for some of you. Those of you who know me or have followed me or stalk us (ha) through my blog know of Rachel’s ear surgeries the past two years. The history is she inherited my allergies and ear issues. Her doctors all say her ear canals are small but as far as Down syndrome goes, they’ve seen smaller. She got her 1st set of tubes when she was about two and half (I think) and they took her adenoids out. Second set of tubes when she was four. Then we rocked along with our share of ear infections through the years. About three years ago her ENT discovered a hole in her eardrum. We watched for a bit and they noted some hearing loss in that ear so her referred us to an Otologic Specialist. We love both doctors and both offices. The plan was to go in and repair that ear drum with the hope that it would help recover her hearing loss. No assurances.
So the repair went well but guess what? Skin was growing on the back of her eardrum. Who knew this could happen and who knew this was an issue. Skin regenerates so the doctor removed it but told us he would have to go back in to make sure the skin had not regenerated. The skin can grow into the bones and even farther and cause many issues. So a few months later, back into the ear of Rachel he goes. Guess what? The skin had regenerated and Rachel’s skin had regenerated prolifically. It had tangled into bones. So he had to remove some bones and we would be having a 3rd surgery. All the while Rachel was a trooper. The biggest challenge for her was that she couldn’t dance for about a month after a surgery. She also couldn’t carry her heavy backpack and had to leave classes early to avoid her head being hit by the 2100 students in the hallways of her high school. So a few months later, here we go again and guess what? The skin had not regenerated! The doctor rebuilt bones and we were all optimistic that her hearing loss would recover.
First follow-up and her hearing had not improved. No big concern because her ear was still healing. Then, a few months later we’re back for our 2nd follow-up and her hearing had not improved. I feel like I own a few rooms in the surgeon’s house at this point so I know him pretty well. He is ordinarily optimistic and I could tell he was not feeling confident. He told me that he could be wrong, but he didn’t think the surgeries had improved the hearing and we would probably need a hearing aid. Let’s get through the summer and do one more test though. I kind of put that out of my mind.
When we moved her 8 years ago when Rachel was in 3rd grade, we met a lovely family at school open house. The mom of the family is an audiologist. We have stayed friends and get together from time to time. I contacted her and had her explain the hearing test to me. Everyone including my friend kept saying to me, “Gosh we guess you all notice that she doesn’t hear as well out of her left ear.” No we never noticed any issues with her hearing. In fact, no one ever noticed any issues with her hearing. My friend explained that Rachel’s hearing loss probably most impacted her in crowds and groups. She said she heard things like a finger was stuck in her hear. Articulation and communicating can be challenging for individuals with Down syndrome. While Rachel’s speech is semi-clear depending on the situation, I thought about how detrimental this must be for her. Off we go to the August follow-up and hearing test. No improvement. Our doctor was noticeably disappointed that the surgery had not worked.
Rachel who is ordinarily a trooper with ear surgeries, oral surgery and regular doctor’s appointment where they take her blood was less than enthusiastic. I was less than enthusiastic. Don’t misunderstand. I am thrilled that we have such a thing as hearing aids. But this was just one more thing to have to deal with. One more thing to make her different. One more thing to deal with insurance over because many if not most insurance companies do not pay for hearing aids. I also felt guilty for feeling this way. Many parents I know wish this was the worst thing they had to deal with. Rachel was so upset on the way home that she was sobbing. I told her we would get started in school and then we worry about it.
The time came to go to the audiologist to get our practice hearing aid. She was up and down. The audiologist showed me the major difference in what she was hearing with and without the hearing aid. I felt guilty again. Bless her little heart. She has been compensating and doing a darn good job of it. It was a major difference. One minute Rachel was happy with it and the next she was sobbing again. Of course, many children with Down syndrome are pleasers. Rachel is definitely a pleaser. Eventually, you will get her to what she is really feeling but her initial response is almost always to tell you what you want to hear. File that in your reserves for future reference in dealing with your kids. At one point she became almost inconsolable. She was sobbing and pleading “Mommy, I not want to wear it.” The audiologist was quite good with her. I was trying to figure out what direction to go when Rachel said through her tears and snot, “I not want to leave class early.” That was the turning point. That’s when I knew what the problem was. Rachel thought she had the same limitations with her hearing aid as she did when she had surgery. She thought she couldn’t dance anymore. Once I understood this, the audiologist and I both explained that she could do all the things she currently did. No hearing aid in the shower or when swimming but it would not impact her in her activities other than to help her. She warmed up a bit and said she would wear it home. She had CYT class that night and was convinced that she would not need it for class. I was convinced it would definitely help her in her musical theater endeavors. So she agreed to wear it and ask the teacher/director, Cody, what he thought. Well, he picked up on the cues and assured her that he thought it would help her in her singing and acting. Her trademark smile returned.
That was about five weeks ago. She has embraced her “ear aid.” She got her own “ear aid” about a week ago. Our insurance did pay for it (partly because we have met our deductible and out-of-pocket from ear surgery and a tonsillectomy this year!) Jonathan says he notices she doesn’t say huh as much. Truly, I can’t tell a difference but she says she hears better. I think she must or she wouldn’t wear it.
There’s a lot to be learned from the “tale of Rachel and her “ear aid.”