June 10, 2021
Thanks to Baby Center for highlighting the importance of Newborn Hearing Screenings! This is HUGE-- and can change the life trajectory for so many children born deaf or hard of hearing. Rose is a great example of a child born to talk . . . to everyone! We are beyond grateful that she was identified early and has this incredible technology to help her. We are so lucky!!!!
To read my blog, please visit:
There you will find the few blog entries that I completed when Rose was just diagnosed. The post titled, "Here's to the Now" really dives deep into my emotional journey, so I apologize if it is too long! That was actually the last time I wrote a real post. But my goal is to do an update this next month-- homeschooling the girls this year has been slightly distracting! But "Basement Academy" ends tomorrow (6/12), so hopefully I will have a bit of free time! Ha!
Thank you all for being supportive! Thank you for being encouraging, loving, and dedicated to us and our journey. We are immensely grateful.
HAPPY HEARING BABY POST
April 21-- posted late because I can't get my act together, and I am just figuring out how to use this blog! (Teaching friends-- this reminds of me of Canvas!)
One of the most important things a parent with a hearing impaired child can do is offer a “language rich environment.” The audiologists and doctors have reminded us to “talk, talk, talk” to Rose. Clearly, they don’t know us very well. Neither of us ever stop talking, and our three-year-old daughter Neve is a chatter-box as well. We are dying for Rose to get her hearing aids so she doesn’t miss out on all of the interesting things we all have to say. We are counting the minutes until our appointment on Thursday.
The purpose of this blog is to share our journey with hearing loss with our friends and family. Undoubtedly, we are fascinated by all the things we are learning, and we plan to pass along the new information, resources, and stories. We will also write about the variety of emotions we encounter as we tell Rose that her hearing loss is not a deficit but rather something that makes her so profoundly special and unique. With amplification, Rose will hear just like the rest of us. And while she may have the inconvenience associated with wearing and managing hearing aids, who doesn’t have a challenge to overcome.
When we first learned that Rose had hearing loss, we were devastated. Everyone had convinced us that she would pass the “big” hearing test now that she was older and more developed. Even the receptionist at the audiologist’s office said that it was unusual to encounter a child with true hearing loss. It was quite common for babies to “refer” in the hospital and then pass weeks later. Even our ENT was willing to bet me big bucks that she was fine.
Needless-to-say we were heartbroken when we left the audiologist’s office on April 6th. With limited information, Mike and I sat down in the privacy of our car and cried. The audiologist played a simulation of what Rose could hear (or rather not here), and the thought of that muffled, distant, unrecognizable speech killed me. We knew nothing about the world of the hearing impaired . . . and I panicked. My heart was broken for this six-pound peanut who only slept on our chests. I hated the fact that she hadn’t been able to hear our constant love and affection. And I hated thinking that she was going to be dependent on technology to assist her for the rest of her life.
Two weeks ago, I didn’t even know what a decibel measured. I didn’t know there was a difference between conductive and sensorineural hearing loss-- in fact I didn’t even know those words. I had never heard of the hearing aid companies Phonak or Oticon, and I didn’t know anyone personally who’d had an infant with hearing difficulties. Come to find out . . . it is quite rare. Two or three out of every one thousand children will born with some form of hearing loss-- that’s considerably less than 1 percent. Never, ever did it cross my mind that I might have a child who struggled to hear.
But that was two weeks ago . . . and times have changed. Mike and I have spent hours on the internet (what would we do without the internet!), read audiology textbooks, talked to doctors, friends, made new friends, connected with Sound Beginnings-- Idaho’s state program, and explained to our three-year-old that her sister would needed cool hearing aids to hear all the fun things she had to say. We have told our family, friends, and even some acquaintances about Rose’s special situation and, after some tears, we have come to terms with it. There is no going back. And most certainly-- there is no time to dwell. We have too much to do.
April 26, 2015-- Rose is 2 months today.
When we went to Logan on Thursday (2/23) to get Rose’s hearing aids, I pictured us having one of the those YouTube moments-- where the baby hears her parents for the first time and beams with joy. That was not the case. Rose slept the entire drive to Logan, woke up for a bottle, slept through the audiologist placing and programming the hearing aids for the first time, and then slept the whole way home. Apparently, the hearing aids are no big deal.
But they are a big deal. We now have the confidence that Rose can hear us-- and we are THRILLED! We LOVE her hearing aids. They are Phonak Sky Qs. They are sleek; the earmolds are tiny, and they work! Mike and I have figured out how to test the batteries and functionality each morning, and Rose is a happy, hearing baby! She seems much more animated and alert when we play . . . and she continues to babble and talk which makes us all smile.
Just looking at her brings so much happiness, and we are so grateful for technology. Hard to believe how far hearing aids have come in the past decade-- imagine what the future holds. Rose’s hearing aids are digital. There is no on/off switch or volume control. They are computer programmed to match her exact decibel loss, and they do not amplify all sounds. They will regulate sounds so her ears will also be protected from extreme loudness. So far she doesn’t seem bothered by them. We affix them behind her ears with toupee tape, and Neve has started decorating them with special “hearing aid stickers.” We could not be more excited. She truly is the cutest little thing in hearing aids in the world!
