With each new hurdle for Gwyneth and Tricia comes a new opportunity to learn and grow and enter into community with new people. Just a little over two years ago, we were primarily focused on Cystic Fibrosis and were just getting familiar with Organ Donation and Transplantation. In the time since, we've also become personally familiar with Diabetes, Premature Birth, Lymphoma, and several other health-related topics.
As of yesterday, we have a new topic to become invested it. Gwyneth's ABR shows that she has severe hearing loss in her right ear and mild to moderate hearing loss in her left ear. The hearing loss in both ears is most likely premanent. We're adjusting to this news very well, but we are just getting our feet wet to the idea that our daughter is definitely "hearing impaired", so there is a lot of new information and possibilities to sort through.
There is still a lot of unkown, as two of the tests yesterday showed conflicting results. Over the next few weeks, we'll be working with her at home to try and get a handle on exactly what hertz and decibels she can and can't hear with either/both ears, taking her to a few more hearing tests, and getting her fitted for hearing aids. We're ready for this new challenge, and we are very glad to know for certain about her hearing loss so that we can begin to learn how best to accommodate her needs. With every new challenge, we continually remind ourselves of the joy that Gwyneth brings to our lives and the simple fact that the odds were against her even being alive when she was given to us. We continue to be thankful.
Some good news...Gwyneth was totally in a great mood, although a little loopy, when she came out of the sedation yesterday. She's still sleeping this morning as I write this.
Thanks for your prayer and encouragement as we adjust to this new adventure. I'll post more when I have the time and after we've been able to wrap our minds around it. In the meantime, we'll be driving to Durham today...Tricia's regularly scheduled transplant clini begins early tomorrow morning. We're hoping to be able to see Gwyneth's doctors with this new information while we're there.
Thanks!
Nate
96 comments:
Poor Gwyneth! But she seems to be coping and learning very well, despite her hearing loss. I pray her doctors may find the best solution to help her hear - and thus talk - better.
I am hard of hearing, have been since I was about 2 years old. I wear two hearing aids. and with intensive speech therapy and integration into hearing culture, I hear about 88% with my hearing aids on. I know you and Tricia will do what God is calling you for Gwyneth. But having been through the experience. Integrating her into the hearing culture as much as possible is going to be harder for her as a kid, but much easier for her as an adult. Deaf culture treats you as though you can't do a lot of things just because of a hearing loss. I have so many very intelligent deaf friends who think they can't do things, because they've been told deaf people can't do those things. But any of my deaf friends who were integrated mostly into hearing culture are very well rounded adults. Good luck. I will be praying for you guys :)
I grew up with hearing impaired grandparents. They both lost their hearing due to illness. They never say it as a handicapp and therefor no one else did either. You and Tricia are such wonderful parents and God has given you such a special child because He knew you were the right ones for her. May you see all of God's blessings as you adjust to this new chapter in your story.
I am sure there are so many new things for the hearing impaired that this will be an interesting time of learning for your family.
I look forward to learning more when you post on the blog.
Thanks for sharing.
prayers for all--wrapping your mind around it takes a bit I am sure. A new adjustment, more to learn and not life threatening. God is good. Such great technology out there but great that she has some hearing--that helps in the long run.
I will admit that this news just makes me adore Gwyneth even more than I did before, which I didn't think was possible. I feel a new kinship to this little girl, as I grew up deaf myself :)
I know that this is new to you all, but the technology that exists today to help with hearing loss is just incredible...there has never been a better time to be deaf.
I wish I could give you all hugs as you absorb this new wrinkle in your lives, but as I said yesterday, Gwyneth's future is not limited by her hearing...she will be able to do anything hearing people can do, except hear well :)
I anticipate a language explosion in her future as she is fitted with hearing aids and starts sounding out all those sounds she has been missing!
I just wanted to let you know that I have followed your family on here since before Gwyneth's birth, and am inspired with the way you and Tricia choose to handle life's curve balls. I think you will see Gwyneth's verbal development make huge advances once she gets her hearing aids. Also, I am 27, and can remember kids with hearing aids in elementary school, and for the rest of us it was just no big deal. I don't remember anyone making fun of them or singling them out. God surely has great plans for your little girl.
-Stephanie Luttrell
I can imagine how I would be feeling in your shoes- I think I would be reeling a bit but, bottom line, I, like you, would just be grateful to be armed with concrete information now. Your darling girl is a delightful and sunny personality from what I can see and hearing aids, like glasses, will just make her world even bigger and more wonderful. So prayers to all of you as you work with this new information - and new opportunity.
What a great post. As always I am so impressed with the way you guys take everything in your stride and praise God anyways.
“I will bless the LORD at all times; His praise shall continually be in my mouth. My soul shall make its boast in the LORD; the humble shall hear of it and be glad. Oh, magnify the LORD with me, and let us exalt His name together.” (Psalm 34:1-3)
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
One of the bible passages that carried me though my son's diagnosis of Autism was Psalm 139
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
I know you know none of this is a surprise to God and he allowed everything for his purpose. It just gives you new opportunities for ministry and witness.
My prayers are with you as you absorb this new information and make decisions about how best to help your precious adorable daughter.
In the words of Fanny J Crosby a Christian who did not let blindness stop her from praising God and wrote the great hymn of the faith Blessed Assurance
This is my story, this is my song,
Praising my Savior, all the day long;
In Christ
Myra
I'm so sorry Gwyneth's hearing test didn't come out as you had hoped and prayed for. She's done so well and survived despite so many odds that I just know she (and you both as her loving parents) will find your way through this as well. I'm sure as parents you both must be going through so many emotions now as you try to accept this news and begin to move forward from here. I'll pray for all of you in this - that God will guide you to the right people and help you to make the best choices for Gwyneth so that she'll continue to grow and learn and overcome the new challenges. I truly believe she's such a little miracle that she'll grow up to be an amazing young lady, especially with parents such as yourselves. Imagine how wonderful this world would be if all childlren had such dedicated parents as Gwyneth's. ~ Bethany
Thank you for sharing these results with us. We now can better pray for you three. Gwyneth is truly fortunate to have you & Tricia. Not only will you raise her to know she is fearfully & wonderfully made, but she will grow understanding the delighting love of the God who created her.
My prayer will be that in the midst of this new opportunity to learn, new blessings and abundant provision will come to you three. Continue to walk faithfully. You three are a tremendous blessing to us all.
I will cont. to pray for you and your family. My husband and I adopted our daughter from Guatemala and had her home for one week when we knew something was not right. LONG story very short we went to the Drs. at Chapel Hill, and our daughter received Cochlear implants at 14 months of age. She is now three and doing great. If there is anything I can share with you, or be of help to you, I would be more than willing to share our story. I will cont. to pray as you have many decisions that lie before you. May God give you the wisdome in each step.
Glad you guys have some answers about her hearing - and I know you will handle this new challenge with as much grace and good humor as you have all the others! Good luck and best wishes going forward, and we'll all be looking forward to hearing more from Gwyneth as her language improves!
Nate & Tricia,
I am a CODA (Child of Deaf Adults) and grew up using sign language as my primary means of communication. After my father (who lost his hearing at the age of 9) passed away in 1996, my mother (who lost her hearing at 12 and was deaf for over 40 years) received her first cochlear implant and can now hear!! It's amazing! On January 20, she is going in to have a second CI surgery, so she'll have two CI's!
You're already one step ahead of the game! Keep teaching her sign language. Unfortunately, so many people start using it as a form of baby communication, but quit when they learn to speak. Sign Language is a life long skill that will help her, not if-but when, her hearing decreases. Hopefully that's not until she's well into her middle ages, but you never know.
My part time job is delivering amplified phones, CapTels, TTY's and other devices for those who have hearing loss. Fitting job for someone who never knew any different and grew up using a TTY!! ;) There are so many new breakthroughs in technology...I'm sure Gwyneth will be in the BEST of hands with whatever you choose.
God Bless!!
Gwyneth is so lucky to have supportive parents, and sounds like very good medical care. It is wonderful that it was discovered at such a young age, when she is the most resilient and able to adapt to things. I have been awed by your family's over-all resiliency and continued faith. It is also incredible to see all the love that you share. Even with all the obstacles you have incured, you are so truly blessed.
Ok, if you want to get in good with the deaf community that precious Gwyneth is now a part of, stop using the term "hearing impaired". "Hard of Hearing" or "hearing loss" is a more appropriate way to describe her condition. There's your first new FREE tidbit of education. It sounds like she'll be a good candidate for Tennessee Temple University in the future :) Praying for your family as you adjust to this new information!
My parents adopted my little brother who was deaf. He was left tied to his crib while his real mother walked the streets doing whatever. During the 3 days he was tied to his crib he developed spinal meningitis which made him lose his hearing. While sitting in church one day they announced there was a little boy that needed a home. My parents had 7 already, but could not wait to get this little boy home and give him a family and love. Jeff has been such a blessing in our life. He is completely deaf in both ears. He does speak sign language, but because he took speech class from such a early age he is amazing at reading lips and perfers that with non deaf people. I can tell from viewing Gwyneth's videos there is nothing that is going to hold her back. I was amazed at how she kept trying and trying to stand up. She truly is a fighter and will work through whatever life hands her. You have one amazing little girl! But, than so are her parents! Praying for your family!
She is still adorable little Gwyneth to me. I am sorry that it is a set back and not what was hoped for. Technology today is better than it ever has been so hopefully she will be able to get some assistance and continue learning.
Nate, you and Trisha are great parents. Don't ever doubt yourselves. God made Gwyneth the way he wanted her. Just as cute as can be!
Praying that your apts of the next few days go well.
I don't think God could have picked better parents for Gwyneth. I know that this news was probably a little hard to swallow, but you will rise to the challenge just like every time before. We will be praying for you all!!
I am sorry that you are faced with yet another hurdle. Take a deep breath, hang in there, you can do it.
Our daughter has a unilateral hearing loss also. She is profoundly deaf in her right ear and has normal hearing in her left ear. She was adopted 1.5 years ago at the age of 4. She functions very normally most of the time, even though English is her second language.
The most difficulty comes in with classroom settings and noisy places. As long as the speaker makes eye contact and speaks clearly, she gets what they are saying, even if she doesn't catch it all. The place where we notice it the most is in the car, where she is sitting behind us and can't see our faces. The other place is in interaction with other kids. There are a lot of misunderstandings and hurt feelings because she didn't hear correctly.
Kids are amazing. Gwenyth will probably compensate as much as she can. And I know you will do everything you can to help her be all she was created to be.
Nate,
One of the best things you can do for her (besides the hearing aids!) is to sign with her. I know you do this. There is a ton of controversy on this, but studies show that it will help build the language portion of the brain. In fact, it helped us tremendously when my child had moderate hearing loss due to ear fluid (and then we found out he was autistic, a whole other story) and we still use it.
If you don't have them, check out Signing Time. Best sign videos out there!
You are an amazing family and I thank you for sharing each step of your journey. Gwyneth is such a blessing! She is a beautiful child and looks so happy!
The deaf and HH kids I worked with were beautiful and amazing... and no different from any other kid, really. Your commitment to your daughter and communication with her will make all the difference. Enjoy getting to know a new culture. You will certainly bless those around you as you have through all these years.
I am 90% deaf in my left ear due to no ear drum. I popped it when I was in middle school, had it patched, and that tore. never went back to get it fixed.
Visit the bookstore and look into books on American Sign Language. With Gwyn being so young, she should be able to pick up this new venture quite easily and it will help her communicate her needs to you and Tricia.
While it's sad to know that your child has any kind of impairment, it is always best to learn this at an early age so that it is easier for you all to adjust to this new way of life.
Best wishes and I'm sure Gwyn will do spectacular!
Wow...I completely forgot that you already work with Gwyn and sign language so just ignore my ramblings in my last comment!!! *smile*
This is a perfect time in Gwyneth's life to become fluent in muntiple languages! Her brain in soaking in at an amazing rate! Now the to of you will have to work, but you have not impressed me as being afraid of challenges. Find a school or class that will teach you in full immersion. Also, to feed you spirit as well, find a deaf church and
attend a few worship services. Gwyneth's hearing may be functional all her life, but right now she needs
to communicate and the 2nd language will help her in her college degree. Be strong and lean hard.
Although this isn't the news we all had hoped for, I know that you and Tricia will handle this new hurdle with the strength and optimism you always do. It will be exciting to see all Gwyneth can learn and accomplish once she gets her hearing aids. Praying for your family, as always.
Praying for you guys that God guides you and the doctors to make the right and best decision for Gwyneth.
could cochlear implants be an option for her? keeping you all in prayer as always - God direct your steps as you raise your amazing gift of love!
I try not to spend to much time on the computer anymore and so I have not written in a long time...
Know that I pray for you guys and you are always close to my heart!
I could not believe it has been already two years since Gwyneth's birth...wow...she is a beauty and I has wonderful parents who will do all that is needed for her well being...
Lost of people are praying for your beautiful family...
Take heart knowing you are covered in prayers..
God Bless
Nadine
Welcome to the journey! I'm a mom of three deaf and hard of hearing kiddos. My biggest challenge each day is getting the middle child to roll out of bed and all three out the door each morning.
Check out www.handsandvoices.org-- there's a ton of articles that you might enjoy reading. If you would like a complimentary newsletter, let me know.
Looking forward to reading your blog!
So great that you have gotten those results for Gwyneth while she's so young. Although it will be a challenge, I'm certain you and Tricia will do whatever you can to help her.
Praying!
I know there is so much to deal with but here is some advice that helped us through.
We had a sense of "Oh crap - I can't beleive we didn't know this all along. We need to make up for lost time!"
But here's the truth.
You don't have to think of everything as a 'make it or break it' decision. Because it is not.
And you can always change your mind!
For example - we started out with American Sign Language and then moved to Signed Exact English.
Like Melissa, integration into hearing culture worked best for us. But that is not the case for everyone.
We got our best informaiton from other parents at support groups.
Take your time and explore your options. (I know you are) Then try it out and see what works for Gwyneth.
I am so proud of you guys for being such awesome parents!!!
Praise God that the left ear is so good. I pray that the right one is better than they think. Gwyneth is a miracle and I can imagine that as time goes on, we will even see it more.
What a great perspective you both have! I have a daughter that was born with Cerebral Palsy and Epilepsy. We get some curve balls thrown at us now and again. I refer to them as our "new normal". I think I am going to adopt your terminology. Looking at these curve balls as a new opportunity to learn and grow. Yes, they become part of our "normal" life, but I think a new persepective may be in order. Thanks for helping me to see that. : )
Thank you for being so positive in your parenting. I'm sure your initial reaction was not, "wow, this is a great learning opportunity". But you always put things in perspective and are very positive. Thank you! It has encouraged me, as a parent of young children.
What a boring world this would be if we were all the same! Please don't misunderstand me to think that I am glad Gwyneth has hearing loss because certainly that is not the case.
My point in saying that is that God can totally be glorified through our differences. One of the most beautiful ways I've seen God be worshiped is through sign language.
What a joy it will be to teach Gwyneth to be bilingual!
Maybe that's a big ramble. But I hope you understand what I'm getting at.
On another note, we will also be at the Duke clinics tomorrow, with my grandmother for a PFT and a visit with the Cardio Surgeon (who's clinic is beside the transplant clinic). It would just make my day if I got to see y'all! Be on the lookout for a stalker-ish looking pregnant woman.
Ha!
You'all have a great attitude! Keep it up!
Do you mind my asking if G.'s hearing loss is related to her prematurity, or if it's purely circumstantial?
What an inspiration you all continue to be -- and how blessed Gwyneth is to have you as parents! Praying for you as you enter into this new season -- keep your chins up, keep pressing on, and don't let anything steal your joy!
It great that you look at this as accomodating her instead of this being a problem or something wrong. I'm wanting to take my Josh for hearing test to make sure his hearing is okay. There are some thing that are not adding up for me.
I have every faith in this world that the three of you and your extended families will handle this beautifully just like you have so many other obstacles. You are all blessed to have each other. I am praying for all of you. Gwyneth is flourishing, God wants her to continue to touch people. Hearing loss is hard, but certainly not any harder than anything else you have gone through. God will continue to carry you.
I am hard of hearing myself. Like Cheney said, when you want to get involved with the deaf community on the good side, discontinue using the term "hearing impaired" and use "hard of hearing" or "hearing loss". I recommend you to start getting in contact with the hard of hearing people near you to get ideas of the life experiences from the hard of hearing people. They will help you big time for sure with advice, feedback and more. There are MANY different experiences the deaf and hard of hearing community will tell you about. Hope this help out a little bit.
I don't know if you will sign with her, but I have been taking sign language and I love it so much. It's just a great thing to know regardless of if you have hearing loss or not!
Actually, come to think of it I am pretty sure that you do use signing with her anyway!
Also, they have very cute colored hearing aides now! I have a friend who got bright blue ones for herself and her son.
Prayers and hugs!
you take everything that is handed to you in (great) stride. so thankful for the online community that supports you so much, as i'm sure information will be flowing your way. wishing good news and encouragement from tricia's tests and that you get good direction from gwen's drs.
blessings to you as you press on…
As a parent of a deaf little girl, the news may seem overwhelming but God has openned many new opportunities through our daughter. God never gives us more than we can handle. I have traveled down the path that you are beginning and am here is you have any questions!!
You guys have such an open heart and are just plain amazing. Gwyneth is lucky to have such awesome parents! And you are lucky to have her as well! :o)
It is great to hear that your spirits are high and you are focused on God and the blessings that are still evident. May God Bless you continually!
If you havent done so check out www.signingtime.com they have some great DVD's for begging sign!
Signing Time is a labor of love, born out of the desire for one mother to create a community that could communicate with her deaf daughter. Two Little Hands Productions, co-founded by sisters Rachel Coleman and Emilie Brown, is the company that produces and distributes the Signing Time product line.
My husband and I are both deaf and involved in deaf ministry. There are no limits for a person who is deaf or hard of hearing, so don't lose heart at all! :)
So glad to know you've been using sign language with your daughter--you're already headed in the right direction! :)
God bless you all as you embark on this new chapter in your lives!
Holly
Praise God that the medical community is able to find this out so early now. Gwyneth is such an incredible little girl and so smart I am sure she will learn to sign more and adjust well. I pray for you and Tricia since we as adult adjust at a slower rate. BUT the two of you will do great also. You are both great parents God gave Gwyneth to you because He knwe what awesome parents you are.
Our daughter is profoundly deaf in both ears. We adopted her in March 2009. She had absolutley no language until we got her. She now has a vocabulary of approx. 300 signs. At the end of this month she goes in for her 2nd cochlear implant. I would like to encourage you to start teaching Gwyneth sign language. Either ASL or SEE. It will allow her to express herself and reduce alot of her frustrations. Good luck in making your decision as a family about which way to go as far as hearing aids, cochlear implants or deciding not to use amplification of any kind.
Lori
http://www.2china4norah.blogspot.com
I have moderate to severe loss in both ears. Always have. My parents were utterly SHOCKED when I was diagnosed at 5 because I had been functioning so well. I had taught myself to lip read. I still need people to look at me when they talk to me as it is part of the way I am able to communicate.
My hearing aids have just become a part of who I am and I do not view it as a major handicap. Just part of me.
I didn't read through the comments, so this may have been suggested already, but I highly suggest the Signing Time DVD series that is made for children. I know that she can hear, but so can my boys. We have used basic signs to facilitate language development (one of my boys has a severe speech delay), to allow our boys (who have Down syndrome) to be able to communicate their wants/needs more effectively while they are learning to articulate better and we even used it to teach our children that were adopted from other countries to learn English faster.
The Signing Time series is wonderful and all of my children LOVE them and enjoy learning and knowing some basic signs. My girls (who have no special needs) sign all the time and love teaching signs to their friends. They also like being able to talk when they're supposed to be quiet :)
Nathan & Tricia. There is no doubt in my mind and heart that you will follow God's leading with Gwyneth. Maybe this could be a new ministry for not only you. Learning and teaching sign so we can all communicate with not only G but whoever attends NHC. We love you guys! Judith Taylor
I think that God chooses wonderful parents for special children and am so glad that Gwyneth has you and that you both have Gwyneth. Who remains to be one of the cutest little people I've ever seen. Thank goodness you've found this out early and can give her every advantage possible and she'll continue to be a joy to you and to all of us lurkers/lovers of Gwyneth.
Have they talked about cochlear implants at all?
I am a mom to a deaf child. It is hard to "hear" this news at first but you learn it's just another part of life. The people I have met are amazing. My son has bilateral cochlear implants he received at 14 months old. He was profoundly deaf in both ears due to a connexin 26 gene mutation. My husband and I are both carriers of a recessive gene for deafness. He is the only person in our family who is deaf. His deafness has made me a better person. He is the most amazing child you could ever meet. As of today at 3 years old he is testing 3 years above his hearing level. (He's been hearing for two years and tests at 5 years old.) I would be more than happy to give you some insight and information. I welcome you to check out my blog (www.thelawrencetriplets.blogspot.com) that chronicles his journey into the hearing world. I put of lots of videos and stuff tracking his progress. Gwyneth has proven she is such a strong child. This will not define her but make her that much better.
As a teacher it is such a delite to see parent take such an active role. Having any kind of assitance for her hearing will do wonders for her down the road. I will NEVER forget when a kindergartner was diagnosed with hearing impairments and the first day of school with her hearing aids she was in awe of the sound of her shoes making noise on the ground!!! What great advocates you are for that sweet, spirited girl!!!!
Wondering how you knew to test her hearing. Did you just notice that she didnt seem to hear her when called...???
Oops I had another question--Is this due primarily to her prematurity????
My comment on your last post seems not to have gone through...apologies if it has and you hear from me twice (I'm "koshercookie88).
Anyway, I'm hard of hearing (between moderate and severe in both ears), and I can tell you that Gwyneth has an excellent chance of living a normal life in the hearing world, especially since you've caught her hearing loss so early. I didn't get hearing aids until I was five, and nobody understands how I don't have any speech problems. But Gwyneth's only two, and since she's already learning to talk, it's probably not much of a setback at all. I don't even think of myself as hard of hearing, and I'm confident Gwyneth will have a similar experience. Good luck. Praying as always. :-)
I'm sorry about this but Gwyn will succeed with all of your support! It is good that this was caught at this time so that she can get hearing aids and speech/listening therapy to catch up on those critical development skills. Please do continue to teach her sign language in addition to speech so that Gwyn can be involved in both the deaf and hearing worlds.
Just FYI-- while I don't really mind the term 'hearing impaired', many other deaf people view this as a 'negative' word and prefer to be called 'deaf'. This is probably partly due to their Deaf culture and pride, and they think 'hearing impaired' is like calling them disabled, handicapped,... sort of negative connotations if you get what I mean.
If you have any questions about deafness, hearing aids, or anything of that sort, feel free to email me. I recommend Phonak hearing aids but of course, Gwyn would have to try different models and well, she's too young to decide which one she likes better but perhaps the one that she responds the best with. She would likely not be eligible for a cochlear implant because one of the requirements are that both ears have to have severe to profound hearing loss, not just one.
Best wishes and praying all works out well and that Gwyn will be speaking and listening in no time!
Marissa
Just wanted to add several more comments, especially in regards to some of the comments said by another commenter on this post. Many deaf people today think they can do anything except hear and that remains regardless of which worlds they are living in-- hearing or deaf. I have not seen other deaf people telling other deaf people that they can't do things-- perhaps that was years ago but I don't believe that is the case currently. Perhaps there are a few who still think they can't do things but they could have been told that by hearing people, not deaf people. And that could still've happened in the hearing, if not deaf, world.
Gwyn is welcome in both worlds and she can do anything!
Oh I wanted to suggest a website where you can find assistive devices such as a vibrating alarm clock, strobe light for fire alarm/doorbell/or any other kind of alarm, TTY, or Captioned phones, ASL books,and many more. This could be useful for Gwyn when she is older.
http://www.harriscomm.com/
Hearing loss is such a MILE THING after all you have all been through,,,, she will be/and IS just fine.
I'm sorry that the testing shows Gwyneth has hearing loss. I think that she is very lucky to have parents that have met this new challenge with such an upbeat attitude. I can tell you that my first post after learning about my son's hearing loss was not so upbeat. How lucky she is!
These first weeks can be a blur, as more testing and hearing aid fittings are done. Plesae don't hesitate to contact any of us parents that have gone through this hearing loss journey with our little ones. The technology is completly amazing. My deaf son can now talk in full sentances. Just amazing.
Praying for your family.
God made her just the way he wanted her and that makes her perfect!
I have never written on your wall, but have enjoyed following your site for quite a while. My youngest son was diagnosed with a mild to moderate hearing loss at 5 months after failing the newborn hearing screening at birth. We were told that the hearing loss was in both ears and was permanent. He wore hearing aids for 6 months and we have continued to have the sedated ABR every 6 months. He has also had weekly speech therapy since he was 3 months old. His hearing has progressively improved each time and for the first time EVER, 2 weeks ago, his hearing was deemed "normal." No more hearing aids but they will follow him closely. No one can explain it. I can....GOD! Good luck and keep blogging!! Gwyneth is precious and it is amazing what these hearing impaired children can do!
One of my friends is an engineer at InSound medical. They have a revolutionary hearing aid I thought you should learn about.
http://www.insoundmedical.com/
I'm not sure if it's suitable for children, but it sounds really promising.
Praying for a safe trip for you all - and a good report. If you're even allowed - stop in and give Jess & her family some encouragement. They've had 2 calls on lungs now that ended up not being good. Jess is having a hard time dealing with it. http://prayersforjessicadavis.blogspot.com/
Thank you!
A lot of deaf and hard of hearing people prefer not to be called "hearing impaired" because it is considered as a definition that those people with hearing loss "have no power" to do things that others told the deaf/hard of hearing people that they cannot do things like the hearing people do such as operating a vehicle and more. That is one example that is considered as an insult to the deaf and hard of hearing communities when they are not given the chances to prove that they can do many things like getting a college degree.
I know that you and Tricia want Gwyneth to be able to accomplish the goals in her life. The main thing is that you and Tricia want to be able to show Gwyneth that she has the power to choose the things she wants to do in her life when she is older. Don't let other people press you down with their statements that Gwyneth can't do things because of her hearing loss.
I am hard of hearing myself, I proved MANY people including half of my family friends wrong that I accomplished one of my goals which was to get a college degree in PSYCHOLOGY. Yes, Psychology. I got a lot of negative comments from other people who said that I can't be a psychologist. I told them that those people have no power to shoot me down the drain because they have no control of what I should do with my life. But I was the one who got a college degree in psychology, not them.
I was the chosen one out of all candidates applying for a psychological position with an organization because of my EXPERIENCES and SKILLS. Guess what? I was the ONLY ONE candidate with hearing loss while the candidates who can hear normally. The other candidates complained that I should not be hired because of my hearing loss. But that was not the case from my employer. He was looking for EXPERIENCES and SKILLS. He considered me as a human being who can do anything. He chose me to have the position while telling the other candidates that they did not get the positions because they have committed "deaf and hard of hearing discrimination"
I got this off a website to help understand better with the definitions. The term "Hearing Impaired" is a technically accurate description of someone who is hard of hearing or who has no hearing ... however, many Deaf, hard of hearing and late deafened people prefer not to be called impaired. They don't want to be primarily defined by their lack of (or poor) hearing.
Wow, I have to say that I'm kinda shocked, I really doubted that she had anything other than a mild hearing loss. Anyway, one of my best friends growing up was completely deaf in one ear and had very mild hearing loss in his other. He too was a preemie. Other than him saying "huh?" a lot and listening to music way too loud, he wasn't much different at all. He was stubborn and didn't wear his hearing aid either so I'm sure that it didn't help. Little G Rose is one of the most determined kids ever and you guys are the most determined and loving parents ever. I have a feeling that she's gonna not only be fine, but do really amazing things.
To the Anonymous psychologist: Congrats! You should be very proud of yourself and I admire you for your devotion, strength, and faith to think that you can do anything hearing people can regardless of your hearing loss. I agree with you because I myself am currently a deaf 2nd year Physician Assistant student and I have a BS in Biotechnology. I've met several deaf doctors and there are not only deaf doctors but deaf nurses, PAs, vets, dentists, PTs, audiologists, etc. I don't know if you are aware of this website: www.amphl.org, which stands for Association of Medical Professionals with Hearing Losses and there are so many helpful tips here for those interested in the medical/health professions. Gwyneth can do anything she wants to do! :-)
Hey Nathan,
I lurk around your blog...but I never comment. I am friends with Patience from LU and found my way to your blog through her blog about Isaac a few years ago.
I know you guys are great parents and you will do everything that you can with this new information to ensure that you make the best decisions for Gwyneth. As you embark on researching a new challenge I wanted to make a suggestion.
There are 2 films that give great insight into Deaf culture in America. Both are relatively unbiased and show both sides of the argument I see that other readers have commented on. The first is a fictional movie made by Hallmark showing parents struggling with the decision of a cochlear implant. It's called "Sweet Nothing in my Ear". The second is a fabulous documentary made by PBS called "Through Deaf Eyes". Both would be great films for you and Tricia to view when you are ready.
While I was at Liberty I attended a deaf service at Living Word Baptist for 3 years. The pastor is deaf and so are most of the members. If you ever find yourself in Lynchburg, you should attend a service. It's a very neat experience.
After LU I taught in public schools for a while, but eventually returned to graduate school to get my Masters in deaf ed at the Univ. of Tenn. I am now a deaf educator (8th grade reading-LOVE IT!) at the Florida School for the Deaf and Blind. I am very open minded and so is my school. (And so was UTs program: I chose it for it's open philosophies and comprehensive education) I have students that don't know sign language and students who communicate only in ASL and everything in between!
Along the way you will encounter professionals who mean the best to help you guys with Gwyneth, but some of them will be very set in what they think you should choose for her. My advice is to listen and then get a second opinion. It never hurts to hear all sides. I know you'll do your research and find out what's available. Everyone has an opinion or a story, but what works for some people might not work for you. Once you decide what is right for your family, don't let anyone's opinions make you stop fighting to get Gwyneth everything she deserves.
If you ever want to talk to an unbiased Christian professional in the field, please feel free to contact me. I would love to be a sounding board and share my experiences. (kilpatrick.jen@gmail.com)
I know Gwyneth is going to do great things. God bless all of you as you continue this journey. And thank you for being an ordinary inspiration of true Christianity. :)
My Aunt, Uncle and 2 cousins are all hearing impaired. In fact my uncle and one of my cousins are both completely deaf. My aunt hears some, but it seems to have gotten worse over the years. She went to a regular high school and was valedictorian of her graduating class! My one cousin is a phenomenal basketball player and my other cousin is a journalist for a newspaper in Alabama. My Uncle is VERY intelligent as well. So while there are some people who sometimes treat the deaf or hearing impaired as though they are ignorant, most of those I've known have been VERY intelligent! So you might have a genius on your hands! :o)
I'm praying for you guys as you make some adjustments.
4 of our 8 kids wear hearing aids. 2 got them at age 3; one got them at 18 months; and the other at about 6 months. So we've been there on that one.
Today those 4 children are 24 (working on a masters in church music at Southeastern); 19 (majoring in nursing, presently minoring in music, at Liberty); 17 and 9 still home schooling but play musical instruments also. All of my kids (hearing impaired or not) surpass me in musical strength, and I grew up with normal hearing. They still wear hearing aids in both ears & do great. There is also an avenue of potential financial help for NC kids with hearing loss. They've helped us for years. If you'd like to know more contact me at my xanga:
www.xanga.com/a_quill_for_His_use
You'll love how much more responsive she becomes when she gets them.
And my kids don't even know sign language. If they needed it, we'd go that route, but so far they haven't.
Sorry to hear about Gwyneth's hearing loss. My 8yo son is Hard of Hearing(HOH) and diagnosed at 23mos. The impact didn't hit us until a day or two later. If you do feel the need to mourn, do not feel bad about it. You would not be mourning having a Deaf/HOH child, but just a change in the life you thought you would have. A lot of parents go through it, even though it is not talked about often. Rachel Coleman (co-founder of Signing Time) sings about it in her song "The Good."
If you haven't done it already, it would be good to call the Early Intervention in your state. They will provide services, whatever there is a delay. At least in Illinois, you can decline any and all services recommended.
I wish you the best of luck with wherever your future path leads you. Please e-mail me with any questions regarding hearing loss, I think we've been through it all with our son!
Nate, Tricia & Gwyneth,
Wow! I just have to say that you guys are amazing! I am so blessed by the fact that you are taking this news so well. God Bless you both! We are praying for you all!
Thanks for the update on sweet Gwyneth!! As you said, she is such a miracle and every day is a blessing! She is such a wonderful little girl and thank you for sharing your lives with all of us.
Keeping ya'll in my thoughts and prayers. Praying clarity for her doctors and for you and Tricia as you make decisions that are best for Gwyneth's future.
Praying for safe travel as well.
Stacey
I was a preemie back in the early 50's and have hearing loss in my left ear. I also have very bad vision in my left eye. My body was able to take over and reteach the right side of ear and eye so I didn't notice the loss for many years. I do wear contacts now but my hearing in my right ear is more than compensating for the loss the in the left. People think I am nuts when I tell them I can hear or smell things they don't know of until much later. I can smell gas leaks a mile away and can hear the electric box outside with the window shut. I do not wear a hearing aid. Things have changes so much since I was a baby 56 years ago. You will be able to have many options these days. Gwyneth will thrive because she has parents who staying on top of things and willing to learn and trust the options. Be well.
Nate - I had a 60% hearing loss until I was three, and it was corrected with surgery (different issues than your girl's). But, it didn't have an effect on my speech once it was corrected. Her hearing aids will help her out a lot!
Also, if you could please pray for my friend, she had her second liver transplant last year after 10 years with her first liver. She is experiencing chronic rejection and her doctors are resorting to chemo therapy to knock down her immune system (she has an autoimmune disorder) and she's feeling pretty icky from it. Any extra prayers would be appreciated!
Sorry to hear this, but that beautiful baby is a miracle thru and thru, along with being a fighter. She will thrive, and even moreso as she learns to communicate with sign (along with her hearing aids and therapy to help her hearing flourish)
She is one adorable tough little cookie and God has truly blessed your family :)
I am the Mama of a hearing impaired dgt (profoundly deaf) who was adopted from China at the age of 4 yrs, 8 mths. Please feel free to email me (thelukefam@gmail.com) with any BTDT questions you have. We have a right side hearing aid that we would love to donate somewhere to reduce the cost of yours...if your audiologist will negotiate that (if you don't have insurance coverage), let me know and it is yours. Know that this is VERY manageable and will quickly become "no biggie." I promise...
Heather (Chesapeake, VA)
I praise God for the blessing Gwyneth Rose is to so many people. I thank God that He blessed her with parents who are constantly striving to give her every opportunity. I marvel at the miracle He fashioned to bring her into this world.
I am sorry that Gwyneth has this extra struggle. Somehow, I believe that He and she will use this cross she has to bear to reach out to other people, just as Tricia has done with her CF and the both of you have done with the hurdles in your life. I look forward to seeing how God uses Gwyneth to carry out some special part of His plan.
God bless all of you!
Well the title of your post says it all. Gwyneth has amazing parents and you guys will continue being wonderful parents. You dont' life life half-hazardly and you rely fully on the Lord so hearing/not-hearing well the Lord already knew the results of those tests and He already has a plan..I know you guys know that.
As I have already read on the comments you are going to get a variety of opinions, options, beliefs and I know that does not surprise you.
Whether Gwyneth grows up as a hearing person or grows up connected to the Deaf Community..well both have pros and cons..but ultimately..the development of her language is most important. That I am sure you already knew.
Only time will tell how she develops, what happens with speech, etc. Just use all the tools you can to give her all the language you can in whatever means you can. Language, language, language. Whether spoken, signed or both..just language.
You guys are great and Gwyneth is growing up and learning so much. I have a feeling that will continue.
Blessings
Thanks for the update, Nate. I'm praying that you get consistent results soon so you know exactly what you're up against and can act accordingly. You guys have such a great attitude about all this and a good focus - thankful Gwyneth is here and enjoying the gifts God has given you.
I'm sorry that it turns out she has hearing loss. I wish you peace of heart as you come to accept this news. I know from experience that any time a parent hears of a new diagnosis is takes some time to work through the pain and worry we have for our child. Give yourself the time and space to do that. You have managed so well as a family I know you will meet this new challenge with courage and faith. There is a lot of support for children/people with hearing impairment these days, she will live a fine life. In the short term I hope Gwyneth adjusts easily to her new hearing aids and that it makes a big difference for her.
Sorry about the news but now comes the good part. Now you can figure out what she needs in order to communicate more efficiently and a whole new world is about to open up. There is such an amazing plan for this young lady. I am proud to say, I have watched this little girl grow up and can not wait to see how she is going to change the world.
Bless her heart! She has been through so much, but she seems like such an amazing little girl who has such loving parents. Just think about how much her world will open up when she has her hearing aids. It is such a blessing that you were able to find this out so early. May God Bless your family always!
So thankful for your learned information for precious Gwyneth. As a parent I totally admire your willingness to face any hurdle with and for your sweet blessing! Keep us posted with her progress!
My li'l flowergirl (not so little now....18!) and ger younger sister are both profoundly deaf. Gywneth's speech has often reminded me of theirs. THey both have received cochlear implants - the oldest girl was actually about theoldest you can be to have it done. THat hashelped them both immensely. THe great thing about a diagnosis, is that you can learn loads and get down a track of knowing the best way to deal with it(here, trying to teach a granny to suck eggs comes to mind...you know all about this...lol). She'll be just amazing, hearing loss or not, just as she always has...why?...because God is in control and He has given Gywneth to 2 fabulous and loving parents who will do everything they can to help her! Praying for you as always. xxx
I have been blessed reading your blog over the last several years. I have a 2 year old son who was born Nov 07 who is deaf/blind along with other special needs. Although born full-term, we have spent months in the hospital.
With all that being stated, our son, Titus received a cochlear implant last year - and it's truly amazing. This week, after a year, he began to mimic the same sounds we have made. With all of his issues, you can only imagine how that thrilled our soul.
We also have two adopted children from South Korea - and one of them has severe hearing loss in one ear and there are concerns with his other. You will learn new and wonderful things about hearing impairment over the next few months. Thanks for being so open and sharing your heart with so many.
www.thelifeoftitus.blogspot.com
Paul & Becky
My kids were born at 25 weeks and my daughter has severe vision and hearing loss. She wears glasses like Gwyneth and behind the ear hearing aides since she was 9 motnhs old. She is 2.5 years old now. She has moderate hearing loss at low frequencies and severe hearing loss at high frequencies.
We live outside of Winston-Salem so we are familiar with the programs in North Carolina. We were put in touch with the program called Beginnings and someone came to talk to us about hearing loss. Then we got signed up to work with a teacher from the North Carolina Early Intervention Program for Children Who are Deaf or Hard of Hearing. It's a free state program that has been incredible. We have a hearing teacher come every week. It is our favorite therapist to work with and we feel we've seen the most improvement with this hearing therapy. I hope you get in touch with both of these programs soon as I can't even stress how much they have helped Lindy. Lindy hears amazingly well, understands us amazingly well, and started talking last fall.
I also recommend talking to your CDSA person about assitive technology. This program pays for all of Lindy's ear molds, batteries, and repairs.
Good luck. It's definitely a learning experience!
i have been following your blog for a long time but don't think i have ever commented before now. before becoming a mom to 3 little ones i was a teacher of the deaf to 2yr-5 yr olds. i am so happy to learn that gwyneth will be getting fitted for hearing aids soon. i know from expereince how much a toddlers language explodes once they are able to pick up missing vowels and constants. gwyneth is so lucky/blessed to have such wonderful, acitve parents who want nothing more than the best for ...i truly wish there were more parents like you both out there. i will continue to pray for gwyneth and the rest of your family. many more blessings to you all!!
Hello there from Va Beach! I have been reading your blog for forever but have never commented! I am a mother of two kiddos - ages 7 and 5 - who both have bilateral cochlear implants and would love to offer you any info etc that you might be interested in... It has been a journey but they are both simply amazing...their speech is fabulous- they are mainstreamed and if you didn't see their "ears" you wouldn't know that they were deaf.
Please feel free to contact me at any time... if Gwyneth is a CI candidate and you would like to meet my kids and talk about things I would be happy to do so.
Take care and good luck! Happy Bday!
mcolley@nps.k12.va.us
@ Marsmile, thank you! Thank you for the kind words. My family has been extreme proud of me when I got my college degree in psychology. That was one of my accomplished goals that I made. My parents were very excited that I landed a great job. At the schools where I was a student, my teachers used me as a good example (with my permission, of course) to the deaf/hard of hearing children and their parents of what I have accomplished in my life after I was diagnosed with hearing loss at a young age. From what I was told by my teachers (now my friends), the parents were in shock when they learned that I graduated with a degree in psychology and currently working. The parents often think it’s impossible that their children would be able to work after college, but after hearing my story, they were changed forever.
Wow!! Congrats on your BS. That is great of what you are doing now as a Physician Assistant student! :-) We need more people like you and me to help the deaf and hard of hearing community see that many deaf/hard of hearing people can do anything hearing people can do regardless of their hearing loss no matter where we are. I will take a look at the link that you just mentioned. I have a couple hard of hearing friends who want to go in medical fields. Thank you for the link.
I am working on getting my second degree in child development and family studies so I can work with the deaf and hard of hearing children and their families. I know that the parents have been seeking for best resources for their children with hearing loss. I have been talking with many deaf/had of hearing children (and their parents) about what we have been discussing about common topics regarding the deaf and hard of hearing communities and the hearing loss myths that we often hear about this or that. We already know that at the point that not many are educated on the deaf and hard of hearing world. We need to spread the awareness on the deaf and hard of hearing.
-JM
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