Hearing Aids or Cochlear Implants?



Fun at the lake!

 

 Recently, I have been trying to read everything I can about hearing loss, what works best and the different approaches to take with speech.  Our hope is to have Dylan speaking on the same level as his peers.  Something that has been hard for me to comprehend is that children with hearing loss have to be taught to listen and speak.  I guess this is what sparked my research.   I’ve realized that as Dylan’s parents, we have to be his #1 advocate; therefore, we have to be as knowledgeable as possible!

This is where the cochlear implant debate started.  Is Dylan hearing everything he can?  Are his hearing aids powerful enough? Dylan had recently received new hearing aids when this debate started and we had not started seeing improvements.  We found out that to even be considered for cochlear implants, a child under 2 has to have a profound hearing loss and a child over 2 has to have a severe loss and not hearing in the normal range with hearing aids.  Cochlear implant recipients have to be evaluated, have an MRI and go weekly to UAB prior to receiving implants and after.  This is a major surgery that does away with any residual hearing.  This would be a major change for us all if we went down this path.  After this research, we found out Dylan wouldn’t be candidate until 2 and after further research, we don’t think he ever will because he is hearing in the normal range with his hearing aids.  PRAISE THE LORD!!! And PTL for our audiologist who saw the need for more powerful aids!

Shortly after finding this out, Dylan and I were on our way home for the day and “Shout to the Lord” came on the radio. I was singing away and happen look in the rear view mirror to see Dylan clapping along!  What a sight this was! He had not done this before and I know this was God’s way of showing me we were on the right path with his hearing aids.

Fast forward a few weeks: Dylan has made TREMENDOUS progress! He has said mama bye-bye (when I leave), eat, uh oh and up.  What sweet music this is to hear him speaking!

 Next up: Our approach to speech therapy, sign language and much more!

Why?

WHY?

Shortly after Dylan’s diagnosis, these questions came.  I had a very normal, uneventful pregnancy.  I took care of myself (besides indulging in my always present sweet toothJ) and did everything right.  So why is this happening to our family? During this difficult time, I was reminded of James 1:17 “Every good and perfect gift is from above” (this scripture is also on Dylan’s door hanger!) It helped to remind me that we may not understand why, but we have to put our faith in God and remember everything is a part of His plan. 

After more hearing test and no changes, we were referred to a genetics counselor at UAB.  Last Valentine's Day, we traveled to Birmingham.  The doctor examined Dylan and he didn’t appear to have any other symptoms associated with his hearing loss (thank you God!)  They sent us over to Children’s Hospital to have his blood drawn.  What a heart breaking experience to watch your 5 month old have blood drawn!! Thankfully, we were done after that, but still no answers.  UAB had started just weeks before our visit, having the ability to test for 66 different types of genetic hearing loss.  Again, technology is such a blessing!! Although we left with no answers, we left with the hope they would come. 

Nearly FIVE months later, we had answers.  Dylan had Connexin 26 hearing loss.  It’s a hearing loss that typically doesn’t progress and isn’t associated with any syndromes.  I still had hope his hearing would improve before this call.   Instead of dwelling on this, we praised God that other than his hearing loss, he was healthy baby and we had the answers we had been looking for!

A little more information on Connexin 26 (Cx 26) hearing loss:

·         Is the most common type of hearing loss

·       Cx 26 is a gene that makes an important protein needed for function of certain cells inside the inner ear

·       Most children who are born with Cx 26 hearing loss have 2 parents with normal hearing and no brothers or sister with hearing loss

·       Parents who already have 1 child with hearing loss, have a 25% chance of having another child with hearing loss

·       Our siblings have a 50% chance of being a carrier for Cx 26

·       Both parents have to be carriers for a child to have the possibility of hearing loss

What a lot of information to take in!!  It was important to us to find out these answers not only to answer our own curiosities, but to help us with treatments decisions.  Children with this hearing loss respond well to hearing aids and cochlear implants. 

With this being the most common form of hearing loss, why have we not been able to connect with other parents? Hopefully, my blog will help us to connect with other parents of children with hearing loss! If you know of someone, please share my blog!

Next up on my blog: The cochlear implant debate!

One Test

It all began with one test. 

Our journey with hearing loss all began with one simple test.  How thankful we are for the technology we have been blessed with! If we didn’t have this technology, Dylan’s hearing loss may not have been detected for years.  

Dylan was born on September 12, 2011- the best day of my life, aside from mine and Troy’s wedding day J  I didn’t expect it, but after his birth, all I could was cry at the miracle we had been blessed with.  Dylan was born 2 ½ weeks early and was also born on my dad’s birthday.  I think they will always share a special bond because of this, but also because my dad has had to overcome a disability.  He lives every day to the fullest and doesn’t let it hold him back.  I pray Dylan has this drive and determination and I know he’ll look up to his Pop for it ☺

The day we were set to be discharged from the hospital, we were held up by one test- the Newborn Hearing Screening.  Dylan did not pass the screening and we thought nothing of it.  We were assured some babies wouldn’t pass because they still have some fluid in their ears.  We were given a referral to Children’s Rehab Services and were on our way.  Two weeks later, we headed to Children’s Rehab and had another hearing screening, which once again did not show Dylan’s hearing to be in the normal range.  We were scheduled for another, more thorough hearing screening.  We were again assured this next test could back normal. Another 2 weeks went by and we were back at Children’s Rehab for an ABR (Auditory Brainstem Response)test.  For this test, electrodes are connected to the scalp.  This test took nearly an hour and deep down, I knew something wasn’t quite right.  As long as I live, I’ll never forget the day we were informed that our child had a severe, sensorial neuralhearing loss.  All I kept thinking was that my sweet baby had never heard my voice, never been soothed his parents’ voices. Once the shock of the news wore off and we able to gather our thoughts, we sat down and reviewed the information we had been given.  We knew right away our next step was to get Dylan hearing aids.  

At 2 months old, Dylan received his first set of hearing aids! I kick myself now for not videotaping his first fitting! It was truly amazing to see his expression change as they were turned on.  Words can’t express witnessing your child hear sounds for the very first time! Tears still come to my eyes thinking back on this moment.  As you know, babies grow at very rapid rate and this includes their ear canals.  So, we were at our audiologist office 2-3 times a month to be fitted for new ear molds.  Hearing screenings were also performed periodically to see if there was an improvement in his hearing so his aids could be adjusted.  For the 1st 6 months, we didn’t have much of a problem keeping his hearing aids in.  However, after that, it was quite the struggle.  He realized that he had something in his ears he could take out and play with, chew on or throw!  I can’t count the times a hearing aid was lost in this transition stage.  When we were going through this, we had a rule: If Dylan took them out 3 times back to back, we left them out for 30 minutes.  This gave everyone a break and we started again.  I am thankful for ourpersistence, as well as our family and his daycare teachers.  Dylan now keeps them in all day and has realized how much more he can hear with them in! As soon as I put them in each morning, he immediately starts babbling and “talking” to me.  

I have finally started this blog to document our journey and hopefully connect with other parents.  Stay tuned for more information on how we are deal with hearing loss, an update on Dylan’s new hearing aids and some technology we’ve been using!