Caden, as the audiologist put it, was a "rock star" during his hearing test. The audiologist first checked for fluid in Caden's ears and he definitely has fluid. This is extremely common with cleft lip/palate babies. Then we were put into a dark little room with a rocking chair and he was hooked up to the ABR test. I had to get him to sleep before the test could begin and he knocked out in less than 5 minutes. He only woke up once during the entire test. We were able to complete the entire screening in that one visit. That was the good of it.
On to the bad of it; Caden has profound hearing loss in both ears. This was not a surprise to us. It isn't difficult to do an "at home test" for hearing. One such test I put my ipod's ear buds up to Caden's ear and cranked up the volume and he didn't respond at all. Another "at home test" was when Caden was sound a sleep in our room and I broke out singing very loudly and he didn't move a muscle (that time it was probably to his benefit that he has hearing loss). Even though this was no surprise it still was disappointing. I was hoping they would find that his hearing wasn't as bad as they had previously determined.
All hope is not lost. The next step is to clear the fluid from his ears most likely with tubes. After that, we will retest his hearing. Then he will be fitted for hearing aids. If the hearing aids do not help then we will look into cochlear implants. I really want to explore every avenue possible to have Caden hear. I am already starting to sign a little to him. I want to prepare him and us for the chance that he won't be able to hear. I really want him to hear our voices and I desperately want to hear his sweet little voice speaking to us. Sometimes I will have moments where I get so sad thinking he may never even hear his own name. It really chokes me up when I think about that or the fact I may never hear him say,"mommy." I never truly realized what beautiful gifts those were with the girls, and I won't ever take it for granted again (except maybe when they are screaming at me and each other:))
Well, next week we see our oh-so-friendly ENT, and we will be meeting with our plastic surgeon again. She has an ENT we will get to see as well. I am hoping we can connect better with this ENT and never have to go back to "Dr. Rock Personality". It would also be beneficial to work with the ENT our plastic surgeon uses because we could combine the ear tube surgery with his lip repair surgery.
I love the new pictures I took of Caden. His precious little personality is really coming out. He may not be able to hear, but he sure knows how to communicate with his big blue eyes. They just pull me in every time and I am full of joy and happiness in those moments.
Mary
I love that Caden Cooperated with the ABR...our Will not so much. If it gives you hope we had 2 failed hearing tests and a repeat ABR after the tubes with much better results. The fluid really does a number on them. Prayers for better results down the road and good for you exploring other alternatives. You all have come such a long way in such a short amount of time! Keep up the good work! Kate
ReplyDeleteMary, Chad and girls....We're praying for Caden every day with you. What a precious, precious little guy you have. He is such an adorable addition to your family. My heart just breaks when I read your fears, Mary. His gorgeous little smile and big blue eyes just melt my heart! He'll be fighting the ladies off in no time! We're wishing only the best for all of you. Thanks for keeping us all updated.
ReplyDeleteHi Mary & family, I click on your blog several times a day just to see Caden's beautiful face! Your pictures are so adorable. Thinking about you always. Lots of love, Aunt Dean
ReplyDeleteHe is such a gorgeous little man...and so lucky to have such a LOVING mommy and family!! As always, prayers are with you! As far as the signing goes, good for you to already be starting, even if you hopefully won't have to use it for too long! Have you seen Signing Time? It's awesome...
ReplyDeletehugs, Kalissa
Hi Mary!
ReplyDeleteYou have a blog! I didn't know!!! I just read the whole thing!
First of all... Caden is beautiful! Those gorgeous eyes grabbed my heart right away! :-)
Your daughters are beautiful and though you and I talked on the phone about how they are with Caden, I really loved reading about it. It brought tears to my eyes to read how sweet and loving their hearts are.
I am so sorry about the latest ABR... but I will continue to hold hope that with the removal of fluid (and/or the use of a bone conduction aid) he can access some sounds.
It is a grieving process - - thinking about possibly not hearing your child's voice - - but I can tell you, being nearly seven years into our journey, that there is also tremendous joy and heartswelling pride when you see your child sign "mommy" or sign "I love you."
I really hope that the appointment with the plastic surgeon went well and that the ENT turns out to be a better fit for Caden and you. Distance becomes irrelevant when a good match is found.
Oh... and good for you for getting Caden in to the GI doc (who do you see?) in a timely manner. I have found the availability of the docs to be my biggest issue with CHOC in the year that we've lived here. We never had that problem up north. You may have learned this already, but in my experience, if you learn the name of the nurse who works directly with the doc, you can call them and they will have more "power" to get you on the schedule at the time the doctor wanted.
It's hard to believe that you are someone who is medically fearful (interesting analogy with the heights...); you are doing an incredibly amazing job keeping up with everything and keeping it all straight. Caden is so blessed to have you (and his daddy, sisters and grandparents!) in his life!
I've thought of you often since we spoke and am so glad to read that, despite the every day challenges, you are all finding so much joy throughout your days :-)
~Kristi