The Deaf shall hear… 28 Days of Cayden, Day 9

Cayden was deaf. Not hard of hearing. Not hearing impaired. Profoundly deaf. He failed the newborn screening. He failed the follow-up ABR. He failed the follow-up sedated ABR. He failed our home-grown really foolproof  ‘Let’s bang pots & pans very loudly behind him and see if he flinches,’ test.  No doubt about it. He couldn’t hear a thing.

We were referred to UNC-Chapel Hill’s department of otolaryngology (ear/nose/throat) and audiology to have the most in-depth, most sophisticated test by the best trained specialists. Still not a sound was registering.

side view hearing aid

Cayden’s flat head didn’t help with keeping the hearing aids on, and only added to the feedback he was getting.

Bi-lateral hearing aids were prescribed, to see if that would work. Three hour one-way trips to Chapel Hill were taken monthly, to get re-tested and get new molds made, to fit his growing ears. Every time a child’s ear grows a little, the ear molds need to be re-made because if not, a piercing whistling occurs from the feedback of the highly cranked volume they are putting out.

Cayden’s low-set small ears and floppy head made keeping the hearing aids on and in a constant battle. If they came out a tiny bit, feedback, if they came out a lot…more feedback. If we lost them… tons of money down the drain! Those suckers are expensive!

Even with the ongoing fight against keeping them in, we really dedicated ourselves to giving the hearing aids a good shot. But actually, we had very little hope that they would work. Early on  it was determined that he probably had sensorineural hearing loss caused by a malformation in the inner ear. This type of hearing loss is rarely able to be ‘fixed’ by standard amplifying hearing aids. A cochlear implant is usually necessary to get some sort of hearing. However, because of his brain malformations, the audiology team (a wonderful group of people at CCCDP in Durham) didn’t have a lot of hope that his brain would be able to interpret sound, even if we could bypass the malformed cochlea.

Waiting room CI

Early morning in the Cochlear Implant surgery waiting room. Skylar was not even 2 weeks old, Cayden was not quite 2.

We researched and did our best to show that we were parents who were dedicated to giving him the best attempt at hearing. This 18 month process was a trial of sorts, determining if we would be dedicated enough to go through the cochlear implant process, which was a more complicated, more time consuming process than that required for the hearing aids. We joined a local support group for parent of children who are deaf and hard of hearing (HITCH-UP) that was amazing for us, and all the parents there had such good advice. Many of the parents in the group strongly recommended cochlear implants for profoundly deaf children like Cayden. Their children’s progress was definite and do-able, we thought, and worth fighting for. In our opinion, Cayden didn’t have a lot of plusses on his side. Not hearing was a large disability on top of the vision issues and the physical mobility issues. Trying to eliminate one of these negatives was our main goal (remember during this time, he was still considered legally blind, so we were trying to get at least one part of the deaf/blind taken away.)

So after going through nearly 2 years of hearing aids, monthly drives across the state, and a bunch of tests (including the sleep study, pulmonary study & endoscope to be sure he could handle the long implant surgery) we were finally approved to do the cochlear implant. Praise God! We were so excited!

But this, being our life couldn’t be easy. We were expecting Skylar at the time, and I had a wedding to be the maid of honor in only a few weeks after Skylar’s due date. So, I reasoned we’d already be in Chapel Hill for the wedding, we might as well save a trip and plan the cochlear implant surgery for the Monday after the wedding. Skylar was born the 16th (almost a week late), the wedding was the 25th and the implant surgery was the 27th. Talk about a busy month! Thankfully, the surgery only required a day or two recovery in the hospital, and then he could finish healing at home for a month.

CI scar

The scar from the implant. The implant surgeon had to place his coil in a different place because of his strangely shaped head.

Once healed, we went to the office for the turn-on. What an amazing day. Even though there was no big “wow!” moment, we could see him flinch, smile & could tell it had worked. Again, praises were heard that day!

Cochlear Implant Bodyworn

The Cochlear Implant with bodyworn processor & harness. Now the challenge was keeping both the implant coil (magnet) to his head & his microphone on his ear.

After the turn-on, we had a long series of visits, where they slowly turn up the volume and expand the frequencies the child hears. This slow process took almost a year. We went first weekly for a month, then bi-weekly, then monthly, then 3 months… in the course of the first year after a cochlear implant, you visit the office around 20 times. At a 3 hour drive each way… with a handicapped 2 year old and a newborn. I was a little crazy.

But it was worth it. By the time Cayden was 3, after all the work (and I didn’t even discuss the weekly intensive therapy visits from both a speech therapist and a teacher of the deaf), Cayden was tested and found to be on age level for comprehension and hearing. That is the miracle. Not only could our child hear, he could hear clearly, and he could clearly show us that he not only heard but understood. AT AGE LEVEL. This predicted ‘vegetable’, was age-appropriate, gaining 3 years of comprehension and hearing in one.

By this time, his vision had improved as well, and our many of our prayers really had been answered.  Our deaf/blind child had not only 1 but 2 of his major handicapping disabilities taken away. The deaf can hear. The blind can see. Prayers are answered and praises ring loudly to Heaven.

In that day the deaf will hear the words of the scroll,

and out of gloom and darkness the eyes of the blind will see.

Once more the humble will rejoice in the Lord:

the needy will rejoice in the Holy One of Israel. Isaiah 29:17

 

Shira 

Thanks for sticking with me this week! Next week, I’ll talk about communicating with Cayden and just HOW we learned that he was age-appropriate in his comprehension.

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