Thursday, April 23, 2009

HB 2589

I just heard that HB 2589, the children's hearing aid bill, will be headed to the House floor with bipartisan support from the Health Care Committee. Only one member of the committee voted no, Ron Maurer, and it was noted that he very rarely supports mandates. This is great news! Within the next week or two, we should find out when the bill is likely to be up for a vote of the full House.

Anyone who is interested in contacting their state representative and urging his or her support of the bill is welcome to do so.

To find your representative:

Scroll down to State Representative and the phone and email for your representative will be listed.

Thank you very much!

Wednesday, April 15, 2009

Growing Pains

Our little boy is growing up! He weighs almost 12 pounds and has grown three inches since birth! (If you know our family, you will understand how remarkable this height growth is!) He has outgrown his newborn clothes, rolls from tummy to back and back to tummy, holds his head up, and has even had his first cold- A true sign of childhood.

Ben's ears are growing at a rapid pace as well. He is already on his third set of ear molds, the soft plastic portion of his hearing aid that sits inside his ear. Ben's audiologist makes impressions of his ears and sends them to a factory. In two weeks ear molds return. Ear molds that are already too small for Ben's growing ears!

The microphone, on the top of the hearing aid, picks up sounds and sends them to an amplifier that makes them louder. After sounds are made louder, they go through the earhook to an ear mold. The ear mold's job is to hold the sound inside Ben's ear.

Since Ben's ear molds don't fit tightly, the sound leaks out- feedback. If you have ever been near a person whose hearing aids squeal, they have poor fitting ear molds. Ben's sound like bees buzzing around is head. Sometimes I can hear my voice coming from his ear...kinda creepy.

Here he is rolling like a champ! As he rolls, he loosens the ear mold. Ah, feedback!

Saturday, April 11, 2009

Ben Practices Politics

We first learned Ben had a hearing loss through the Newborn Infant Hearing Screening. Since 1999, when the Hearing Screening began, hearing loss has been found to effect 1 in 22 infants. Oregon mandated the Hearing Screening as a way to insure early identification of hearing loss. Early identification and intervention can prevent psychosocial, educational, and linguistic repercussions. Infants who are not identified before 6 months of age have delays in speech and language development. Intervention at or before 6 months of age allows a child with impaired hearing to develop normal speech and language. However, when it comes to interventions, often times hearing aids, health insurance companies lack support.

At more than $3,000 apiece for hearing aids and no help from insurance, many families are forced to make financial sacrifices or have their child go without hearing aids. Unfortunately, the identification of a child's hearing loss becomes a financial burden. Families become aware their child needs hearing aids, but are left without means for attaining them.

The issue of hearing aid insurance is heating up, and several states are responding with bills to require coverage of hearing aids for some people. This Friday House Bill 2589 was proposed to the House Committee on Health Care at the Oregon State Capital. The passing of this bill would require insurance companies to pay a portion of pediatric hearing aids.

Ben and I attended the committee meeting, along with several experts in the field of pediatric hearing loss. Ben did a fantastic job modeling his hearing aids for the committee while I told our story. Hopefully we tugged at some heart strings. This is what I said:

Finding out your baby is deaf is like being hit with a pile of bricks. Invisible bricks. He was warm and soft and snuggled in my arms. He looked perfect. How could something be wrong? But, at twelve hours old, I was told he failed his hearing test. Impossible. The nurses must have botched the test. But still, through the denial, I felt pain coming from somewhere.

At two weeks old, we took our baby to get another hearing test. He failed. The dull, throbbing pain of those invisible bricks returned. I could have sworn he flinched when we banged the pots and pans over his head desperately tying to perform our own hearing tests.

After a visit to an ENT, a different audiologist, and two more hearing tests we had our answer. Our son is deaf. All the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? The bricks pushed so hard I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of our son were crushed by the dark news of which I had just heard.

I’m his mother. My job is to fix what goes wrong in his world. I hung on the glimmer of hope provided by the audiologist: “He may be able to hear some sounds with a hearing aid.” Hearing aids would be the answer. I knew it.

I researched and found that with my son’s severe loss, he would need high powered hearing aids. Expensive hearing aids. Our insurance doesn’t cover hearing aids. We couldn’t deny our child a chance to hear. Sacrifices could be made. We have a car we no longer drive. Someone might buy it. My husband could work longer hours. I could cut my maternity leave short. Those bricks grew heavier.

We were lucky. Blessed. The Willamette ESD loaned us hearing aids to see if our son responded to sound. On April 1st, at 9 weeks old, my son tried on his first pair of hearing aids. As we snapped the battery door shut, we held our breath. I didn’t know what to say.

“Ben it’s mommy.” He opened his eyes. He looked at my face. He heard my voice.

My son wears his hearing aids whenever he is awake. He smiles more. He enjoys Patty Cake, and Twinkle Twinkle. We listen to Mozart. I can soothe him with my voice when he cries and he hears my goodnight whispers.

If we were not able to borrow hearing aids, my child would be missing these sounds. Soon we will need to buy Ben his own pair of hearing aids. Unfortunately, the high cost of the hearing aids creates a barrier for families like ours. Our insurance does not cover any of the expenses associated with hearing aids. Sacrifices will need to be made. It is not fair that Ben should have to get less expensive, less effective hearing aids, or our family have financial constraints.

We pay for health insurance to cover our family’s medical needs. My child’s eyesight is covered. Why not his hearing? Should he be denied the opportunity to attend regular education classes, develop normal speech, and listen to Mozart?

Friday, April 3, 2009

MRI and CT

Today we spent a long day at OHSU. We arrived at 7 am to have Ben sedated for a MRI and a CT. The nurses began by putting a cream on Ben's hand and feet to numb the skin over his entire body. After forty minutes, the cream worked and Ben was ready for his IV. He was dressed in a hospital gown, given a light sedation medication, hooked up to a blood pressure monitor, and given oxygen. Once he was fully sedated, the nurses wheeled him away for the scans. In an hour and a half a groggy little boy returned. He took a long time waking up and orienting himself.

We also met with Dr. McMenomey, OHSU's cochlear implant surgeon. He has preformed over 1,000 implant surgeries and averages around sixty each year on children. Dr.McMenomy feels very strongly that a child should be around a year old before getting an implant. After learning more about the surgery itself, we agreed.

The actual surgery takes 2 to 4 hours, a long time for babies to be sedated. It involves securing the receiver/stimulator under the skin and inside the skull, and then threading the wires containing the electrodes into the spirals of the cochlea. The internal portion of the implant includes a strong magnent for ataching the external portion.

To secure the receiver/stimulator, the surgeon first makes a small depression in the temporal bone (the skull bone that contains part of the ear canal, the middle ear, and the inner ear). Next, he opens up the mastoid bone behind the ear to allow access to the middle ear. Then, a small hole is drilled in the cochlea and the wires containing the electrodes are inserted. The implant is then secured and the incision is closed. Swelling is minimized by applying a pressure bandage. Babies usually need to stay over night, but adults can go home the same day.

Two to four weeks after surgery, the sound and speech processor is matched with the implant and is programmed and fine-tuned to meet the child's individual hearing needs (This is the portion of the implant you see on the outside of the head.).

After reviewing Ben's scans, Dr. McMenomy feels Ben is a perfect candidate for a cochlear implant! This means Ben could be implanted before Christmas and hearing before his first birthday. What great gifts!

Wednesday, April 1, 2009

Ben can hear!

Today Ben got his hearing aids!

Ben was asleep while his dad put on the first hearing aid in his left ear. When he closed the battery door and turned the aid on, Ben's eyes opened. He looked around the room with wide eyes. He kept looking to left to find where the sound was coming from. It was wonderful! Our little boy heard our voices for the first time!

Look at those smiles!

He loves to hear!