Tuesday, June 15, 2010

The Inevitable!

Last week we took Traxton to Primary Children's Hospital for tests to check his hearing. The results we were given was the very thing we have prayed and hoped against since he was diagnosed with a progressive hearing loss as a newborn. We knew the odds were against us in hoping that his hearing wouldn't get worse, but for the last two years that is exactly what I have been hoping for. Last week that desire for my child to be able to hear adequately with only the help from hearing aides was crushed. We were told after a series of tests where he was required to be sedated that his hearing has dropped substantially. He is profoundly deaf on his left side and severe to profoundly deaf on the right side. Basically, this means that without his hearing aides he cannot hear a thing. Even with his hearing aides a lot of sounds is being missed. We were told that he can only hear at the level in which we talk if it is loud and within a few feet of him.

Sadly, this information did not come as a shock to Jared or I. We knew it was the most probable likelihood from everything we have read about LVA. I also have been able to tell during the last few weeks and months that his response to sound had gotten worse. There have been times where he had his hearing aides off to swim or play in the water and I would yell at him to get his attention. When I would finally get him to look my way, I could tell that he hadn't heard me call his name even though I had been yelling it multiple times. Even though deep down I already knew this was happening, hearing the audiologist tell me the definitive news made me just sit there and cry. It made all my fears a reality and took me right back to the first few months of his life when everything we had anticipated with a newborn was turned upside down and all I could do was cry to my friends and family.

Thankfully, having my gut warn me of the tests outcome made it so much easier to bounce back from my tears and despair into the role as my child's advocate. I needed to know what all this would mean for Traxton and where we go from here. All of the audiologist with Primary Children's were so amazing and have been so supportive of our family and of the hundreds of questions we have had. We had to get Traxton some new "high powered" hearing aides to use for a trial period so see if he makes any progress with his speech and cognition. They also told us that the most likely and most beneficial response to his profound hearing loss will be a Cochlear Implant. Part of the cochlear implant is surgically placed under the skin embedded into the skull. A device similar to a hearing aide is worn externally to pick up the sound and then filter and digitize it into coded signals which are sent as FM radio signals to the cochlear implant under the skin. The implant then sends the signal through electrodes inserted into the cochlea and up through the auditory system to the brain for interpretation. It's pretty amazing that because of technology, there are still options for individuals and families who are dealing with a profound hearing loss.

There are still tests that Traxton has to have before he is considered a candidate for cochlear implants. We have to go back up to PCMC in a few weeks to have a few more tests and meet with a surgeon, but I am really praying that everything will look okay and he can be considered for the implantation. I feel like this is the best thing for him and our hearing family. He is such a sweet little boy who still loves to snuggle even though he is almost two years old. He has such a fun personality and always has everyone laughing. I can't wait until we get to see even more of his personality as he grows.
Traxton sleeping soundly during the ABR.


Waking up from his sedation to his biggest fans.

Traxton's new hearing aides. When Treyson saw them for the first time he said, "cool new ears bud"! Too cute.

15 comments:

jaesi said...

Awww man. But by just the pictures you posted...I think this little man has beaten the odds anyway....
his family loves him more than anything!
You are such a wonderful mom. Im inspired by you darling.

Heather B said...

I'm sorry you got news that you didn't want. That's got to be hard to take in. I think he is one of the cutest little boys i have ever seen. I hope (and will be praying!) that he can get the implant. It sounds pretty cool.

Kristi said...

Oh Mandy, I love you! You are amazing and so inspiring. I wish you the very best... You can do it!

Anonymous said...

You are truly amazing and by the looks of it, he is one loved little boy. He is adorable and can beat anything with a great mom like you. I wish the best for you and your family.

Trevor and Katie said...

Hopefully everything works out and he can get the implants. He is so cute. Love you guys.

shaunelle said...

Everything will work out the way it is suppose to. Just keep up the faith. Much love!!!

Abby Sue said...

Sorry things didn't go as hoped but I'll be praying he is a good candidate for the implants. Thanks for your great attitude you are such an amazing example. Love you so much.

Talen and Amber said...

You guys have done such a great job with Traxton so far...I think he's in great hands no matter what:)
Traxton is the cutest:) We love him so much!!

KelliAnn Christensen said...

Sorry to hear the bad news, Mandy. Traxton seems like such a sweet and cute little boy. I know it probably doesn't make too much of a difference, but there is a girl (lady??--she's our age!) in my ward with cochlear implants, and I had talked to her quite a bit before I even knew. Even then, I only found out because I overheard her mention something to another girl about them, and I was very confused. I had never even heard of them, but they seem pretty great. I'll be hoping that Traxton gets approved.

The Bundy Family said...

Oh Mandy I am so sorry. I think that Heavenly Father has such a special role for Traxton and your family. You are so amazing for having such a positive outlook. What a blessing for traxton to have such an wonderful mother as he does to automatically see that perspective. Think of all the crap that Traxton will not hear, as far as media and such. Sometimes I wish I couldn't hear as well. Kind of nice knowing that his innocence will be preserved for a longer period. You are amazing!

Kristen said...

I had a student (third grade) that had a coclear implant. It is such an amazing instrument! I was amazed every day at how well she could function in all of the normal "hearing" settings. Traxton is adorable and either way, he will turn out to be an amazing man. Keep up all your wonderful work being a mom to him :)

Staci said...

I'm so sorry to hear this Mandy. I can only imagine how you must be feeling. What a tough thing to watch as a mother. Technology really is amazing. I hope that everything works out and he can get the implants. I'm thinking about ya. Cute little man. Seriously, I know I always say this, but your kids are all so stinking cute! We really should get them together soon. Our boys would have a blast. Dylan and Traxton would be great for each other I think.

Me said...

Mandy, I'm so sorry. I hope that he gets approved for the surgery. I keep him in my prayers. He is so very cute!!!

Jamie W said...

He is so darn cute! You have a great attitude and that will bless him and his future so much.

Lyndy Staheli said...

I'm sorry. Your kids are so cute with him, and are so supportive. He is one lucky little guy. I hope things work out and that he can have the surgery.