Dealing with a Child's Hearing Loss

I was reading an article in the AG Bell's winter newsletter, and I wanted to share the closing paragraph with you. I think this is such great advice for any parent who learns that their child is deaf. I am just going to quote it. The author of the article is Heather Frost.

"I know hearing loss is tough, especially as a parent of a toddler who is deaf. Try not to grieve too long about what has happened. You as a parent could not have prevented it from happening. Be excited to take on the challenge to be your child's best advocate!"

I think this is probably the best advice I have heard. Good luck to all of you parents who are just learning about your child's hearing loss. There are several people out there for you to talk to and get advice from. Take every opportunity to learn about ways of helping your child succeed.

Cal's Progress

We did another Sound Booth test with hearing aids this week, and Cal responded to 60db on his left ear. We are really excited! His left ear seems to be doing much better than his right ear. We think we may have had a response in the right, but we will continue testing. I thought I would show you some of Cal's progress. I know it doesn't seem like a lot, but this is a big deal in our family! Oh ya, and don't mind Londyn walking by in her underwear, we are real classy in the Perkins' home!

Insurance

“No, your insurance plan does not cover cochlear implant surgery.” Those are the words we heard a few days after Cal’s MRI. Needless to say that sent us into a frenzy of looking into supplemental insurance, advocacies, anything that would help us in getting Cal’s CI covered. One of the advocacies recommended I request a full disclosure of benefits from my insurance. As I read over these it said nothing about cochlear implants, in fact the only thing it said was, “Do not cover hearing aids or similar devices.” Similar devices? If that was their way out they were going to have to better than that. So I called back up the insurance (immediately asked to talk to a manager or specialist) and explained our situation. After a game of 20 questions, we got our $80,000 answer...we are covered! They will only cover one implant, but for now we will take it. It is such a relief to not have to worry about this along with every thing else. I doubt this will be my first battle with the Insurance companies...but this victory was a big one.

Hearing Booth

We did a hearing booth test for the first time this week, and it was a huge success. The process goes as follows:

Cal and I sit in a small booth with big speakers and a TV on our right and left side. I hold Cal on my lap as an audiologist sits in front of him and makes faces at him. As he is smiling and laughing, another audiologist behind the glass window sends sound through the speakers. In our case she said ba ba ba ba in the microphone. When Cal heard the sound, he stopped smiling and got an inquisitive look on his face. We kept repeating this process to see what kind of response we were getting each time. The audiologist explained that he was responding to sound at 70 decibels with his hearing aids on. This means that Cal would be able to hear a big dog barking when he wears his hearing aids. We were so excited about the results! It doesn't mean he won't get an implant. It means that he will respond better to an implant because he is receiving and recognizing sound right now. The more sound he is getting into his brain, the more successful he will be with implants. Way to go Cal!

An Answer

This last week has been a big week for little Cal. The long awaited (and dreaded) MRI finally happened on Wednesday. And a few (very long) days later we got the results. Cal has all his little ear bits and pieces and appears to be a good candidate for cochlear implant surgery. Brynn and I are extremely excited about the news. By no means is this an easy road, but at least we know what road we are on, and that in itself is a tremendous relief.

So here is the basic run down. The cochlear implant will give Cal hearing capabilities. This does not mean that he will hear like you and I hear, but it does mean that Cal has a good chance of being able to hear sound, learn speech and be mainstreamed. Obviously we will take these steps as they come, but as parents we feel like the implant gives Cal options.

More than anything is just feels good to have a direction. For months we didn’t know if Cal could or couldn’t hear. We had no idea where we were or where we were going. And though we still don’t have exact answers to those questions, we do feel like for the first time since we found out about Cal’s deafness, we have been given something tangible.

And so starts Cal's journey towards a cochlear implant surgery.

RollerCoasters & Clichés

There are good moments and bad moments; moments that literally break my heart, and moments that consume me with so much happiness, I cannot even hope to put it into words. This truth lies with every parent, perhaps slightly magnified when your child cannot hear.

Driving in the car, Cal crying in his car seat, and his 2 1/2 year old sister is singing him Twinkle, Twinkle Little Star, because she knows when she is upset, singing helps calm her. Cal continues to cry, because he cannot hear his big sister singing her little heart out. And though she talks and sings to him all the time, Cal has never heard his big sisters voice...heartbreaking.

Cal has the cutest little voice. He coos, he talks, he squeals...and the older he gets, the less he uses it. The doctors warned us of this. At 4 or 5 months old, because Cal cannot hear his own voice, he will not use it. So as we watch our little boy become more and more silent, he does this...complete happiness.



Roller coaster, ups and downs, highs and lows (plug cliché in here). So goes the journey that is parenting.

Cochlear Impant

When we talk about the possibility of a cochlear implant for Cal, I do a really bad job of explaining how it all works. I found this little tutorial on youtube that does a much better job of explaining how the implant works than I do. This may a little soon since we have no idea if Cal can get this surgery or not, but hopefully it helps clarify a bit.

Cal got his Hearing Aids!

So the little guy got his hearing aids! The hearing aids should not do anything for Cal, but the FDA requires that children wear hearing aids for 6 months before they are considered for cochlear implant surgery. So if it comes to that, we want to be ready. For the first time since this process began, it feels like we are moving forward. So even though the hearing aids won't allow Cal to hear, we are still really excited. (Not to mention, the little dude looks like a stud with his new skull candy.)

Help & Hearing Aids

Cal has been an incredibility good kid. He is 2 months old now and huge. He is smiling ton; and not the mouth smile either, when Cal smiles his whole face smiles. He talks non-stop and loves his big sister. He's a cute little dude.
A few weeks ago, we went in for his second ABR (Auditory Brain Response) Hearing Test, and the results were the same. Cal's brain does not register sound at any level tested.

At that same appointment Cal was fitted for hearing aids. A mold was taken of his little ear so that hearing aids could be fitted to him. The hearing aids really shouldn't do much for Cal because his hearing loss is so severe, but he has to wear them for 6 months before they even consider cochlear implant surgery. So we are just taking the necessary steps if it comes to that. (One nice thing is that because the hearing aids are not a hearing solution for Cal, we are able to borrow them. That saves us about $3,000 to $4,000)

Last Friday we had someone from the PIP (Parent Infant Program) come to our home. This is someone assigned from our school district (it can also be from county, state, city, etc.) that helps answer questions and work with Cal. This program is absolutely amazing. It is so helpful to have someone come over once a week that walks us through decisions we will need to make, establishes goals for Cal, assesses his progress and teaches us parenting skills. She puts us in touch with members of the deaf community, support systems, schools, outreach programs; she is very own personal aid. Brynn and I are so grateful for this program. For the first time since we found out that Cal was deaf, we feel like we are establishing a support system.

Cal's Type of Hearing Loss

Cal has profound hearing loss (lay mans terms: he is totally deaf). Hearing loss is typically broken up into mild, moderate, severe and profound. Mild to severe hearing loss is usually treated with the assistance of hearing aids. According to Cal’s tests, he does not register any hearing capabilities so hearing aids will most likely not allow Cal to hear. Cal also has no structural damage (meaning there is nothing wrong with the ear structure itself). Cal’s hearing loss is caused by one of two things: a total lack of nerve (very rare) or a problem with the hearing organ (cochlea). Because Cal’s deafness is nerve related he has what is called Nero Sensory Profound Hearing Loss.

What does that all mean? Well it means a few things. The first thing it means is that Cal needs an MRI. An MRI will determine if Cal is able to qualify for a cochlear implant. A cochlear implant is a rather invasive surgery that places electrodes into the hearing organ (cochlea) and transmits an electronic sound to the brain. Basically the ear is completely bypassed and sound travels from a receiver (worn on the ear) to the brain. A cochlear implant would give Cal hearing capabilities and allow him to learn speech. His hearing would be nowhere near normal, but it would allow him to hear.

If the MRI shows that Cal does not qualify for a cochlear implant, Cal will have no hearing capabilities. At this point Cal’s primary form of communication would be ASL.
They will allow Cal to receive an MRI at roughly 4 to 5 months of age. Until then, it is a bit of a waiting game. These are 2 very different roads for Cal, so for now we are just enjoying spending time with him.