Tuesday, January 19, 2010

More Info About Gwyneth's Hearing Loss

Our trip to Duke on Friday confirmed that Gwyneth does indeed have severe hearing loss in her right ear and mild to moderate hearing loss in her left ear. To be honest, the news that our daughter has hearing loss isn't phasing us much...what has been stressful and very tiring is the phone calls and doctors appointments, etc. trying to figure out what our next step should be Last week was very exhausting, but with a weekend of rest behind us, we're feeling much more prepared.

To answer a question that many people have been asking, Cochlear implants are not an option because her hearing loss is not severe enough. We're hoping to get her fitted for hearing aids as soon as possible.

Fortunately, we have been using sign language with Gwyneth for quite a while, so that will not be a challenge. She is already communicating well with using just a handful of signs. We're hoping, with hearing aids and continued speech therapy, that we'll begin to see/hear a dramatic improvement in her speech skills.

We have been spending a lot of time the past week working with her to figure out exactly what she can and can't hear. It appears that she can hear well enough to become familiar with certain words...she obviously understands much of what we are saying to her. But, it's likely that she is unable to hear certain consonants well, which explains why she has been having issues with speech.

We appreciate the encouragement we've received over the past week from so many in the deaf and hard of hearing community. And, we appreciate your continued prayer and support as we figure out how to best help Gwyneth.

Thanks!

Nate

31 comments:

brad.kellie.babyc.lucy said...

Thank you for posting this information. I am always impressed with the way your family handles these bumps in the road. You are an inspiration! We go to Duke tomorrow for Carter's hearing screen, and I have to tell you that I'm very nervous. But, I feel much more encouraged after reading how you have handled Gwyneth's diagnosis.

P.S. I thought the picture of your parents was you, Tricia and Gwyneth until I read on that it wasn't!

The Hartley Household said...

Nate, I would suggest you for you and Tricia keep using sign language to communicate for Gwyneth. Maybe 50/50 chance, she will understand in speech or not, 50/50 chance, her hearing loss will continue bad (not able to hear anymore or will hear some bit). You will never know what is happening in the future.

Sign Language is very important key for communicating. Yes, speech is helpful as well.

It is not hard. Sign Language is so beautiful!

Maybe you can find your home local to see if you have any sign language classes to take, as well as baby signs DVDs are awesome!

Paul and Christy said...

My mom had severe hearing loss in both ears. It is just something you learn to deal with and work with. I love it that you all are so possitive. My mom had the cochlear implants and they didn't help. That was a big surgery. Gwyneth will do well anyway with such possitive, loving and devoted parents. Life is a dance you learn as you go.

BreezieGirl said...

Perfect timing on this update... I was just thinking of checking in myself. :D

Carol said...

Thank goodness God gave us two ears! And thank goodness her hearing isn't bad enough to need cochlear implants which is actually a very good thing!

Rebekah said...

Glad you've got some answers. I think signing is always good to use with little ones, even if they don't have hearing loss, so I'm glad to hear you've started already!

Keep up the great work! :)

Laurie Johansen said...

I am almost 45 years old and I am completely deaf in my left ear but my right ear hears pretty well. Not many people know that I am hard of hearing unless they go to whisper in my left ear, which I found seems to be the ear most people prefer to whisper into.

We are not sure what caused my hearing loss but discovered the hearing loss when I was about 10 years old. That's a funny not so funny story. I have adapted pretty well with one good ear but would love to be able to switch the phone from one ear to the other when needed.

I am sure Gwyneth will do well with you guys being very proactive in her care and development.

Blessings,

Laurie

Marsmile said...

Thanks for sharing more updates in regards to Gwyn's hearing loss. I am really glad you guys will continue to use sign language with her and like you, I hope that with hearing aids and speech therapy, her speech skills will improve as well. Gwyn is going to have the best of both deaf and hearing worlds! :-)

Also, I was thinking about hearing aid companies-- another great brand in addition to Phonak is Oticon. Both are excellent-- I had Oticon hearing aids when I was 11 months old and until I was in MS/HS, I changed to Phonak. Siemens and Widex are also good brands. Do consider digital hearing aids, not analog. :-)

Again, if you have any questions about hearing aids, ASL, deafness, etc., please feel free to ask.

P.S. Remember I emailed you some ASL websites like 2 years ago? I hope they've helped a lot! :-)

Shannon said...

Keeping you all in my prayers. But I'm glad to see you all see the blessings even in the dark. So your child may not hear perfectly, but she signs beautifully! :) Now THAT is special!! :)

Anonymous said...

you guys totally rock!

you're so pro-active...so willing to take things for face value, come up with a plan and move on, you're just awesome!

for what its worth, in all my audiology classes (i have a BA in speech path, but teach sp.educ and have a MA in sp.educ) we were always taught that your hearing is as good as your GOOD ear...

gwyneth is really going to go far, because of you guys!! seriously, you rock!

Lindsey said...

Good luck guys! I would also definantly continue with sign language and if I were you I would take a class to become more fluent. Some people with hearing loss do not like to wear hearing aids as they really aren't the same as hearing. ie. they amplify everything not just a persons voice, so sometimes it can be overwhelming, and in some cases can make residual hearing worse. I'm sure you know all this and will make the best decisions for you family. :)

ASL is such a wonderful language, its worth learning!

Joy said...

My daughter is currently on her 3rd set of ear tubes (one of which has fallen out - she got them last Feb) and has hearing loss in both ears. We're headed to a new ENT next Tuesday bc I wanted a end opinion about what to do for the hearing issues.

Good luck with Gwyneth's hearing =) She's pretty lucky to have such wonderful caring parents as yourselves!!

SSquyres said...

Congratulations on the head-start with sign language. I have Deaf friends who grew up "oral only" and learned ASL when they were older. They feel their education was severely limited because they spent so many hours every day in speech therapy. They are both Christians and do not blame their parents. They say that their parents were told that oral only was the best way and did what they thought was best for their children.

On another note ... hearing aides have come a long way. One Deaf friend, an ASL teacher, has a new powerful hearing aide that lets him hear music. I asked if he grew up deaf. He said, "Yes I was born deaf." I asked, "Then how do you understand language?" He replied, "I don't. I understand my name but not much else. The hearing aides help me know when people walk by and allow me to hear music. I told him that opera is captioned. He plans to go to the opera with me and other opera fans. Won't it be funny for people to see a group talking in ASL then listening to opera!

SSquyres said...

ps ... Gwyneth will have the best of both worlds if you introduce her to Deaf friends who will teach her Deaf culture. Learning ASL opens a world of new friendships.

Rebecca (Ramblings by Reba) said...

Thank you for the update. While I'm not an expert, I'm hopeful that the hearing aids will result in some "leaps" in development similar to the ones you described after Gwyneth's eye surgery.

I know you're doing all you can for Gwyneth. She's blessed to having such determined parents. :)

Aggiema (Michelle) said...

It is possible that Gwyneth has already picked up lip reading. I was a little older than she when I lost my hearing(4) but my parents did not even realize that I was deaf for awhile because I became so adapt at lipreading. I still lipread at 98% which is better than most people hear. Comes in handy in crowded rooms and sports broadcast!

Twinkletoes said...

I am so sorry to hear that you have another uphill "battle" so to speak, but absolutely admire your positive outlook. Even when it's difficult, keep the positive smile on your face because, as your family has proven over and over - they can overcome just about EVERYTHING!
Stay strong!

Kerry said...

Gwyneth is so blessed by God, and surrounded in love...Nate and Tricia, it is beautiful to witness the never-changing devotion to your daughter and your Lord. It reminds me of the chorus of the hymn, a personal favorite, "Because He Lives," you face tomorrow with victory no matter what happens today. I am always inspired.

Thanks, Kerry

MamatoOne said...

Thoughts and prayers are with you on your journey.

Anonymous said...

Yes, been there done that! I have had a 50% and greater hearing loss in both ears since childhood. They did not teach me sign language, because at the time, doctors were impressed with my lip reading and wanted me to rely on that. Gwyneth is probably already doing a great deal of lip reading--watch how she looks at you to "hear" you. (but I do wish I had learned sign language, so keep up the good work!)

Gwyneth will do great! She's so blessed!

The Hull Munchkins said...

You all sound like you are doing really well after learning about Gwyneth's hearing loss. I'm glad one ear isn't too affected so that she has been hearing some up to this point! Hearing aides should help a lot!

Our fmr 23 wkr has severe to profound hearing loss... we found out at almost 1 yr. She has been wearing aides ever since. Now she is 6 yrs old and we can tell she is using her hearing much more. They have even been able to gradually turn her aides down.

Way to go on signing with Gwyneth! That is the best thing for any baby, hearing or not. We've signed with our deafblind daughter as well as our "typical" sons. They love it!

We own all 14 volumes of "Signing Time"... best DVD's ever!

Blessings to your family as you step forward in this new challenge.
-Patty

Catherine said...

Check out the SIGNING TIME videos. They are fabulous....there are BABY SIGNING TIME and then SIGNING TIME 1 and 2. If they don't have them at your library, they will on line at Amazon. She will love the songs and watching the kids.

Anonymous said...

Thanks so much for the update. Prayers and support for you! SOunds like everyone has ideas for you. Just find what works best for G and her family!

Amy E. said...

Yay for solid information and a clear understanding of her hearing loss. You guys are taking it all in stride and willl continue to be great parents and she is going to excel!

Have a great weekend.

Erin said...

**praying for gwyneth (&yall)**

emma said...

Our daughter has hearing aides in both ears and she does great. Her speech is unaffected and you wouldn't even know she has them unless I told someone. She wears her hair in a bob and they are pretty small. It is amazing what she can hear now. She is 9 and they have been a blessing. They will open up a whole new world for her! Good luck! A wonderful doctor at Duke is Debra Tucci. That is who we saw before we moved to Chicago. She is amazing!

Tanna's Triplets said...

Hello!! I have posted a few comments in the past on your blog but I have been reading for a very long time. I just wanted you to know my son born at 29 week has profound hearing loss. Without his Cochlear implant he is deaf. Like you the hearing loss didn't really phase us, I was actually happy to have an answer for the way he was acting. I pray that Gwyneth keeps thriving and if you have any question about hearing loss for a parent of a deaf child I would love to help.
tannanichole@hotmail.com.
Much Love,
Tanna

Froggymama said...

You guys are great parents! I'm so glad you are continuing with sign language. A lot of parents stop, for fear their child will become dependent on it, but it's not true. Communication is the key! I studied deaf culture/ASL and have had so many hearing impaired and deaf friends, and their parents who supported total communication (ASL and speech path), seemed to raise the happiest kiddos. Sounds like you guys are already on that path. I know you know this, but Gwyneth will go far, you can see it in her eyes. She has that spark and look of determination - enough to conquer the world. Sending good thoughts to you and brave thoughts for Tricia's public speaking. xoxo

nanajobx said...

hey nate, just wanted to remind you that i started my sign class at the dare center in manteo 2 weeks ago. it is not to late to join us if you or anyone in your family is interested.Tuesday's 5:30-7:00

Angie said...
This comment has been removed by the author.
Angie said...

Nate,
I have hearing loss in both of my ears as well due to all the meds taht i take for my CF therapy. I have hearing aid, but they just amplify everything around me and not what I am intending to hear with them. (tv, peoples voices)
Luckily I am fluent in Sign Language because both of my parents are deaf. My father was born deaf and my mother became deaf after she was born. My mother wears hearing aids and they help her quite a bit, but her speech is terrible. My father on the other hand, who cannot hear a thing, speaks better and understands people far better than my mother does. When my father was growing up, his doctor suggested to my gramma not to use sign language with him (which I do not agree to), but my grandma would work with my dad on his speech by placing hand on her throat to get the vibrations of the words that she was tryingto teach him. Obviously this worked out very well for him, because he rarely has trouble understand anyone, and vice versa. Just thought I would extend this to you. My Grandma was strong and worked with him constantly and it really paid off. I'm sure you will do great and Gwyneth's hearing issues will become of thing of the past foryou.
Take care~Angie