Activation Successful!

Just a quick not to tell you that Gwyneth's cochlear implant activation was successful!  It will take some time for her to get used to this new device on her head, and probably a few months if not more before we begin to see her speech improve because of her new hearing.  We'll return a few times over the next several months to have the audiologists adjust the settings until they get it exactly right for her needs.

If you want to learn more about the exact implant system Gwyneth has, you can read about the Cochlear Nucleus System here.

Gwyneth's last photo pre-activation!

Gwyneth's new hearing!

Gwyneth's new friend, a koala with implants just like hers!

Highlight of our trip...Gwyneth bumped into a North Carolina hero in the lobby at Duke...do you know who this is?

Nate

Cochlear Implant Activation Tomorrow!

We are so excited about Gwyneth's activation tomorrow!  We have no idea how she will react...she has enough hearing in her left ear that we don't expect it to be too dramatic.  We know that kids her age often have a difficult time adjusting, and considering she has had almost no hearing in her right ear for at least a few years, we are anticipating she might not be too happy with it at first.

We'll let you know how it goes!

Nate

Cochlear Implant Surgery Report

Warning...a photo with blood below...

Gwyneth's surgery went very well.  Took about 3 hours, and before they woke her up, they tested the device and took an x-ray to make sure it was positioned and working correctly.  It was an outpatient surgery, so we were at our hotel no more than two hours after the surgery ended.

Gwyneth always wakes up from anesthesia very grumpy (we've been told some people react this way).  She remained grumpy until she fell to sleep late that night.  She was feeling a little better on Friday morning.

Tricia spent Friday morning at Duke beginning the transplant evaluation process.  And, we were back home by 3:30 that day.  By bedtime last night, we had weened Gwyneth off the heavy pain meds and she was showing signs of "normalcy".  This morning, Gwyneth woke up feeling much better, and we were able to take her bandage off.  By bedtime tonight, she was full of energy and laughter...amazing how quickly she recovers.

We return next week for a post-op appointment to make sure everything is healing well.  In 3-4 weeks, we return again to activate the cochlear implant and run some tests to get it set up to best help her.  We are very excited!  Thank you for your prayers!

Nate

In Surgery

Nate

Cochlear Implant Surgery

After about a year of research and discussion and prayer, we have decided to move forward with a cochlear implant surgery for Gwyneth.  While she only has moderate hearing loss in her left ear, she has all but complete hearing loss in her right ear.  Because of her hearing loss, her speech is very delayed, and only those who spend a great deal of time with her are able to understand more than a few of her words.

Gwyneth will receive an implant only in her right ear and will continue to use her hearing aid in her left ear.  The surgery is schedule for tomorrow, July 19, and about a month later we will return to the hospital to have the implant "activated".



Nate

Smartest Baby Ever

White Rose Blooming (3 Years)

This is a little late, but better than never!

You are now 32 inches tall and you weigh around 24 lbs!

This past year has brought some incredible new experiences for you. You stood up without any help for the first time just before you turned two, and over the next few months you learned how to cruise around by hanging onto the edges of furniture. You also were given a walker that helped you learn to use your legs and take bigger steps. By April, you were taking a few steps all by yourself, and by the end of the summer you were walking everywhere on your own. You continue to use your AFO ankle braces to help keep your feet flat on the ground when you're wearing your shoes, but we think you'll be out of them before too much longer.

In the past few months you've begun to climb steps using hand rails, and you can even go up and down one step all by yourself without falling. You love to jump, and if there is anything nearby worth climbing, you'll give it a shot. You also love to hang from things like a monkey...the kitchen table, door nobs, playground equipment and anyone who will offer you a hand to swing on. You are a daredevil for sure, afraid of nothing, and always getting back up without any tears when you fall.

You received your first hearing aids (pink, of course) in February, and quickly became comfortable wearing them, although you do like to play hide and seek with them in the car...you hide them, Mama and Papa spend a few hours seeking them. Although you can hear very well with your left ear without the hearing aids, you do have trouble hearing anything with your right ear. You began spending time once a week at home with a special teacher, Miss Heather, who helped you learn how to listen and how to speak using sign language and spoken word. Your verbal vocabulary has grown this past year from about 5 words to well over 40, even if just Mama and Papa are the only ones who can understand most of what you say. You can even say a few words together, and love using your signs and spoken words to communicate what you want or need.

You love to wear your glasses, and sometimes even refuse to take them off when it's time for a bath or to go to sleep. But, with or without them, you love to see and explore new things. You still love to read books, and you are fascinated with watching other children play. You are particularly in love with anything that involves Dora, Clifford the Big Red Dog, Elmo, Yo Gabba Gabba, and especially Toy Story...Woody, Buzz, Jessie and Bullseye are happy to go with you anywhere.

You still love water. The ocean, the pool, the bathtub or even just a cup of water to dip your fingers in. Your favorite part of every day continues to be bath time...we literally have to drag you out of the tub sometimes. You took swimming lessons in the spring, and we spent a lot of time at the pool this year. And, anytime we go to the beach and walk over the dunes and see the ocean, you can't contain your excitement.

You have spent a lot of time with your friends and cousins this year. You love to play and dance with other children, and you are so good about sharing toys and getting along with others. You made several trips out of town to visit family and friends, and you are never scared about meeting somebody new and offering them a hug and a kiss. Your hugs are famous...you love to squeeze as tight as you can and let others know jut how much you love them. And, if a hug and kiss aren't appropriate, you also love to give out high fives and fist bumps.

In December, you began to attend a special preschool program twice a week at one of the local elementary schools for children just like you. You LOVE school, and you always come home ready for a big lunch and a long nap. You've also graduated from the nursery at church to the preschool Lil'K classroom. Even though you're the smallest and youngest in the class, your teachers say that you love to participate and are totally engaged with everything around you.

Turning three also means that you had to say "bye bye" to some people. Miss Donna, Miss Tanya and Miss Jenn have been spending time with you at home each week for the past three years, helping you to learn to speak and walk and play. You have loved your time with them, and they have been a huge part in your development and progress.

In the coming year we look forward to hearing you continue to develop your vocabulary as you grow in your ability to communicate with the world around you. We are anticipating that your time in school with be a huge help as you learn to play and socialize with others. We think that you might be running by the end of the summer. We'll spend as much time as we can at the beach and the pool this summer!

We Love You!

Mama and Papa

Hearing Loss

Gwyneth's ABR went very well. The audiologist was able to get all of the info we needed. We found nothing contrary to her other tests, just more concrete data.

As I've explained before, Gwyneth has severe hearing loss in her right ear and mild to moderate hearing loss in her left ear. With the new information, the audiologist was able to adjust her hearing aids to a more accurate setting. Her left hearing aid was adjusted only slightly, while the gain (volume) in her right hearing aid was turned up significantly.

We're hoping with this new information and the adjustments to her hearing aids that her voice recognition will begin to improve, which will hopefully help her to develop her language skills.

It was also determined that her hearing loss is sensory neural, which is permanent. Again, not a surprise. For those who might ask, Gwyneth is not a candidate for cochlear implants at this point because the hearing loss in her left ear is not severe enough.

Gwyneth came out of her sedation very quickly, and although she was a bit grumpy, she did very well. She slept most of the way home.

Thanks for your prayer and encouragement. It's great to have some concrete information and to know that her hearing aids are now working properly.

Nate

ABR

We're headed to Duke again this morning. Gwyneth has an ABR at 8:45 on Thursday morning. Determining exact information concerning her hearing loss has been a very frustrating journey so far, as it has taken more time and energy than it should have...BUT, we're praying that this ABR will give us the exact information to clearly understand the source AND extent of Gwyneth's hearing loss.

We have a pre-op appointment this afternoon, as well as an ENT appointment for Tricia (to talk about her continuing sinus issues). We'll also have a consult with Gwyneth's audiologist tomorrow afternoon...hopefully they'll be able to adjust her hearing aids so to the most accurate settings.

Thanks for your prayers!

Nate

Hearing Aids Report

To be honest, we were very disappointed with our visit to Duke this week. Neither CHKD or Duke has been able to get a clear idea of Gwyneth's hearing loss. Tests have shown differing results, and Gwyneth has developed a fear of the animatronics in the sound booths (she's literally not scared of anything but animatronic animals), so the only way we're going to get that clear picture is to do another Auditory Brainstem Response (ABR).

Because of the lack of reliable data, the audiologist had no choice but to set her hearing aids to a "conservative" setting, basically meaning, they're set at a low volume so that her ears won't be damaged (had they been set too "high"). We already know that she has severe hearing loss in her right ear, so we can assume that her right hearing aid is not going to help her much at this point. We also know that she has very little hearing loss in her left ear, so we're also assuming that her left hearing aid is not helping much.

Regardless, it is great to finally have the hearing aids and be able to get Gwyneth used to wearing them. As you can see in the post below, Tricia chose pink for the "behind the ear" to match her glasses. The custom ear molds are sparkly (not sure how or why).

Gwyneth was/is not happy about letting us place them in her ears, but once they're in, she doesn't seem to mind. She hasn't shown much reaction to wearing them, and it doesn't appear that they have made any difference with her ability to hear. We understand that it may take a while for her brain to readjust to hearing new sounds, but again, we're fairly certain that they're really not doing much for her either way at this point.

We're hoping to have the ABR and the readjustment of her settings scheduled sometime in the next few weeks, and that, at that point, we'll really begin seeing a difference and some progress. In the meantime, we'll help her become acustom to wearing them.

Here's a video shot a few minutes after she was fitted for the first time...not much to see except for extreme Gwyneth cuteness.

Nate

Ear Accessories

Pink and sparkly ear accessories, to be exact.



Nate

Hearing Aids

Gwyneth was fitted for hearing aids about a month ago, and they've finally arrived at Duke. We're headed there right now! We have high hopes that they will make a difference for her.

Since we're already there, Tricia has schedule an appointment with her TX team...she's had some sinus pain, ear pain, and a dry cough for a few weeks.

Nate

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

And Back Again...

I wish we could earn frequent driving miles this week...by Friday evening we'll have racked up over 500 miles between three different hospital trips. Fortunately, we've been able to spend some quality time with several great friends.

Friday morning at 6am, we'll be heading out to Duke again. Tricia was on the phone all morning on Tuesday, finally able to set up an appointment with a highly touted ENT doctor at Duke who specializes in hearing loss. We're hoping to have some more answers and have a better idea of what the next steps will be for Gwyneth.

Hopefully by the weekend I'll be able to give you a good update on what's now and what's next. Thanks for all of the encouraging comments about this new development.

Nate

A New Opportunity to Learn

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