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.

The Aftershock...

So I am going to be as honest as I can here. Our son is deaf. We know things could be worse, we know technology is amazing now days, we know you know someone who knows someone who is deaf and has a great life, we know that we will be able to handle it…and we know you are just trying to be supportive (and thank you for that)…but to us this was awful. Not awful in the sense that you love your child any less, but it is awful in the sense that I have no idea how to be a parent to a deaf child. I have no idea what questions to even start asking. Awful in the sense that my child may never hear his sister laugh, my favorite song, what his favorite animal sounds like, or his mom saying “I love you”. There are so many questions, so many unknowns, so many tests, so many roads…and here I sit just thinking to myself…”I feel helpless. I feel absolutely and utterly helpless.”

That was the first few weeks after we found out that Cal was deaf. Denial, anger, powerless and depression ran its vicious course. I won’t lie it was very, very hard. Tired eyes and damp pillows can vouch for that.

Then something funny happened. Cal started to smile. Our little boy started to coo. Cal’s little face would light up when I picked him up and suddenly our deaf son started to be just Cal. It was a subtle, yet crucial change for me. I didn’t have a deaf son. I had a son who happened to be deaf. This disability was not going to define my son. And that was my turning point.

The Beginning...

Cal was born on Aug 26, 2008. He was born with absolutely no complications and the actual labor lasted roughly 2 minutes. He passed all his tests with flying colors except for one. Cal failed his first hearing screening. “Should we be worried?” we asked the nurses. “Absolutely not,” the nurses assured us. “99 times out of 100 it is just fluid in his ears. “Come back in 3 weeks and we will re-test him…”

3 weeks later we took Cal back to the hospital, and again Cal failed his hearing screening. At that point the hospital told us that we needed to go see an ENT (Ear, Nose & Throat) Doctor and see what was up.

This is the first point in which Brynn and I started to worry. We scrutinized Cal to see if he would startle to shouts, bangs or his 2-½ year old sisters screaming tantrums. But c’mon, he was 3 weeks old. We had no idea what to look for. The kid slept 22 hours out of the day. Permanent hearing loss didn’t even cross our minds. We had no family history, the delivery was textbook; worse case scenario was that Cal was one of those kids that would fight ear infections his whole childhood and would need tubes in his ears.

A few weeks later we headed to Primary Children’s to see the ENT. The doctor evaluated Cal and told us that he saw no sign of fluid and recommended that we see an Audiologist for an ABR (Auditory Brain Response) Test. This test measures the reaction of the brain to sounds. Off to another doctor…

At roughly the age of 6 weeks Cal went to see and Audiologist to determine if he had any type of permanent hearing loss. Our Audiologist was great. She sat us down, told us that this test would take up to 2 hours because the will test will make different sounds, pitches and decibels to determine if, or just how much hearing loss Cal had. She would walk us through the whole process. We settled in for a long day…After about 10 minutes of testing she slowly unhooked all of the equipment from Cal, looked us in the eyes and said, “It’s never easy to tell parents this, but…”

Honestly after that I have no idea what was said. Brynn and I just nodded our heads, thanked her for her time and walked outside. That is the day that we found out that Calan had profound hearing loss. That is the day we found out that our son was completely deaf.