hearing loss

Hearing Aid Update, 7 Months Later

It’s been a little over seven months since Alvy got his hearing aids and I wanted to give everyone a quick update on how things are going.

When he first got them at 6 months old he was pretty good at keeping them in his ears, when the audiologist first put them in and turned them on the look on his face said, “WOW!” Clearly, they’re the best thing for him even if it did take some getting used to on my part.

Now, his “ears” are just another part of our lives. He wears them about 4 hours a day, some days more than others. He goes through phases of leaving them in and fighting me to keep them in just depending on the day. The ear molds are made of silicone which he has discovered makes a great teether so when he’s cutting a new tooth he’s especially diligent about ripping them out of his ears and chewing on them.

He wears them clipped to his shirt with ear gear that came in the bag of goodies we got from the audiologist. The ear gear is very secure and when you’re talking about something that cost upward of $2,500 a piece, secure is good. Very, very good.

Alvys Hearing Aids2Over the past year I’ve come a long way in understanding how Alvy’s world sounds to him. I’ve asked the audiologist countless questions and read countless articles online that describe his condition. I found this neat hearing loss simulator and it has really opened my eyes as to how much Alvy can actually hear. It’s really changed my perception of his hearing aids and what they’re doing for him. He’s not just wearing them so he can learn to speak, he’s wearing them so he can hear. It’s been a big attitude change for me.

The more I learn about mild hearing loss, the more I realize that the world “mild” is a misnomer. When we first learned about Alvy’s hearing problem the audiologist said, “it’s mild,” almost nonchalantly.  Since that day I’ve been under the impression that “mild” meant no big deal. Perhaps they were being sensitive to an overly hormonal new mom or perhaps they’re used to seeing much worse cases but if anything I’m learning that any hearing loss over 20 db is a big deal.

I’ve read so much about the difficulties that children with mild hearing loss have in school. Without hearing aids, a child with a 35 db hearing loss, like Alvy, can miss up to 50% of what the teacher says and a significant portion of children with minimal hearing loss fail a grade by third grade. I can send him to school wearing his hearing aids and I can advocate the use of an FM system but it can still be difficult for the hearing impaired child to pick up everything a teacher says, as illustrated in this video. We’ve been tossing around the idea of homeschooling the kids and this would be a big reason to do it.

I get stopped a lot when we’re out of the house and Alvy is wearing his hearing aids. It seems I have the following conversation at least once a month.

“Is the deaf?”

“No, he hard of hearing.”

“Do you sign?”

I realize signing is the big trend is baby rearing these days. It seems like everyone knows someone who has taught their baby to sign. It’s true that learning sign early benefits both parents and babies. Our motivation to learn ASL is a little different. I feel that it’s very important for both Evelyn and Alvy to spend time around other kids with hearing problems. I want him to understand that there are other kids out there who have difficulty hearing and ASL is a key part of building and maintaining relationships in the hard of hearing and deaf community. Besides I don’t think anyone can argue that being bilingual is a bad thing.

We’ve started by watching Signing Time on PBS and he’s picking it up slowly. I think the most exciting change I’ve seen is in Evie, she loves learning new signs and uses them daily, sometimes in place of speech, which has been quite a surprise. I love watching her enthusiasm as she picks up new signs and starts using them in her day. I am constantly looking up new signs online as I try to use ASL around the house with the kids and it’s been surprisingly easy to pick up. Most of the signs are very logical and are very easy to remember. We are not even close to being fluent but we’re learning, the hardest part is just remembering to do it often and in Alvy’s sight. Just like anything else consistency is the key to success.

As a mom, you never want to learn that something is “wrong” with your child and when I first learned of his hearing loss that’s how I felt. Now, I know that it’s just a part of who he is. Hearing aids are just another part of our routine, another part of our day. That’s a good thing. When Alvy starts school we’re sure to have a whole new set of challenges and we’ll face them as they come but for now so far so good!

My Baby Boy & Hearing Loss

After months of testing and waiting, we finally got Alvy’s hearing aids on the Monday before Christmas. He’s been in them about 10 days now and so far everything is going well. When the audiologist put them in for the first time he responded immediately by squealing and flapping his arms up and down, the universal seven month old version of, “Oh awesome! I like this!”

He wears them most of the day, except for when he’s in the car, sleeping or nursing. For the most part, he leaves them alone and has only tried to eat them a couple of times.

They came with a whole goody bag of stuff, including a small stuffed animal who wears a pair of hearing aids that look exactly like Alvy’s. It has been great for teaching Evie about Alvy’s “hee-eeing aids” (as she calls them) and has reduced her two year old curiosity to a minimum.

IMG_2534 For those of you who are new to my blog or missed the original post, we first discovered Alvy’s hearing problem during the newborn screening test at the hospital when he was just a day old. When they first rolled the machine for the newborn screening in I thought it was a formality. My baby was perfect, he didn’t need this silly test.

When the technician told us he failed my heart sank into my stomach, I felt sick.

After four failed tests in the hospital we were referred to an audiologist…and told not to worry. So, I didn’t.

ABR number two

When Alvy was a month old we went to the audiologist for a click auditory brainstem response (ABR). After the test was over the audiologist came into the testing room with a big stack of papers and a folder, that’s when we knew for sure.

She explained the extent of the loss and then further explained that since he wouldn’t be still while the test was in progress, it would need to be repeated for us to get a clear picture of exactly what his hearing loss looked like.

When he was five months old we took him to the hospital for a second ABR, this time performed under sedation. That day we had an official diagnosis of mild sensorineural hearing loss, a type of loss similar to the deterioration adults with normal hearing will experience over the course of their lifetime. Hearing aids were our future.

I want to explain to everyone what Alvy’s hearing loss really is. He can hear most things except high frequency sounds which he only hears at a whisper – this translates to English language sounds like S, F, TH and means that without hearing aids his speech will not develop normally.

A graph of Alvy's hearing loss. Everything below the line he can hear, everything above he can't

A graph of Alvy’s hearing loss. Everything below the line he can hear, everything above he can’t.

Unlike conductive hearing loss which can be corrected, sensorineural hearing loss will never get better. For now, the loss is mild but that doesn’t mean it can’t and won’t get worse in the future as his hearing naturally deteriorates.

Like glasses for people who have trouble seeing, the hearing aids are adjusted to amplify only those specific frequencies that he needs help with so as his hearing changes the aids will need to be adjusted. This means we will be visiting the audiologist about every six months for retesting and every couple of months to have his ear molds refitted as he grows.

20140102_111754 As far as our future goes, we really don’t know. He may need speech therapy but that will all depend on how well he responds to the hearing aids. We caught it early but getting the aids took longer than the audiologist would have liked due to circumstances beyond our control (go ahead and ask me how I feel about the chloral hydrate shortage, I dare you).

At 35dB Alvy's hearing loss is on the high side of mild

At 35dB Alvy’s hearing loss is on the high side of mild

Alvy’s hearing and education will be a big part of our lives from here on out. We’ve already been introduced to Texas Hands and Voices (a non-profit group dedicated to helping families of kids with hearing problems) who conveniently have a playgroup every month for deaf and hard of hearing kids at a park just down the street from our house. Though he’s too young to play now, it will be good for our whole family to meet people who face similar challenges. Jason and I have also agreed that learning ASL will be extremely helpful as Alvy grows and we are introduced into the deaf and hard of hearing community.

How do I feel about all this? At first I was in a bit of denial but I’ve had several months to process it and to free myself from any guilt I had surrounding it. He has a mild disability and you know what? That’s okay. It is just one of the many things that make this little boy unique. It may not be exactly what we were expecting when we decided to have a second child but kids are great like that – constantly keeping you on your toes.

His hearing aids will make him different than all the “other kids” and that is something he will have to learn to manage. He has already shown us how strong he is and this minor disability will only make him stronger as he grows. I am so proud to be his mom and am excited to watch him grow and become his own person, hearing aids and all.

Imperfect Perfection

In my past life as a working woman, back before I was a mom, I worked for the March of Dimes. One of the things the Dime was working on during my time there was increasing the number of state mandated newborn screening tests.

I didn’t think much about it. I was happy to help other people’s children. Let me emphasize, OTHER people’s children. Even though I didn’t have kids I was sure I wouldn’t need those tests. Newborn screening tests only benefit imperfect children. Mine, of course, would be perfect.

Those tests were for other people’s children until May 30th when Alvy failed the hearing portion of the newborn screening. That day the other people became us.

I was told not to worry. Babies fail the hearing test all the time, especially c-section babies. Most of the time they still have fluid in their ears and that causes them to fail the test. They would come back the next day with better equipment and retest.

The next day he failed again. Twice. We were referred to an audiologist but still told not to worry. Sometimes it takes a couple weeks for the fluid to dry up.

At their direction I didn’t worry. He obviously could hear. He startles at the sound of a voice in a quiet room or when the dog barks and he wakes when he hears loud noises while sleeping. So when we went to the audiologist Monday I really didn’t expect to hear anything other than “he’s fine.”

Needless to say I wasn’t quite prepared to hear the phrase “hearing loss”.  After two hours of testing it was determined that Alvy can’t hear certain high frequency sounds which will eventually lead to speech problems and delays. Our one month old little boy needs hearing aids.

Unfortunately, that doesn’t make this mommy feel much better. I’m coping with the realization that my little boy isn’t perfect, at least not in the way I thought he would be. Though I know he’s still perfect in his own way and is exactly the way he should be.

Where do we go from here? Alvy has to be retested when he’s three months old. In the meantime we need to see an ENT to have him fitted with hearing aids. After that we get to go back to the audiologist every six months until he’s three years old for monitoring. It’s possible he will need speech therapy down the line but we will just take that as it comes.

This isn’t something Alvy will grow out of. It won’t get better; it actually could get worse. Luckily it was caught very early thanks to the newborn screening test and it hopefully it won’t affect his development too much. Right now, I couldn’t be more thankful for the newborn hearing test…you know, for other people’s kids.