Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.

Tuesday, April 12, 2011

Update on Ciaran

I took Ciaran to Columbia Presbyterian this morning to see the ENT and do a follow up audiolgy exam. He was so excited he was going to "Cormac's City" all by himself with me. Frank went out at 6am to get him some candy as a special treat.

He could not have been more cooperative. The audiologist said she could not believe he just turned 5. She has kids much older who are not as reliable or well behaved. I think he was a little scared but he was awesome.

The final result? Moderate Sensorineural hearing loss in the mid frequencies. The audiogram looked identical to the audiogram from two weeks ago. The good news? It didn't get any worse in two weeks. Still lots of unknowns. The ENT said when you have an audiogram that looks like Ciaran's it is usually genetic. (not ususally COnnexin 26 which is the genetic cause of Cormac's hearing loss. But it could be Connexin 26) The next step is to get him some hearing aids. We need to decide on an audiologist and hearing aid center. He also recommended an MRI to look at the structure of his ears. This will be performed in the next 6 weeks or so. There is a long wait time on MRI's at Columbia. It won't change the course of treatment so a little waiting is not a big deal. He also said we should get genetic testing. (That is already scheduled for next week)

The ENT also said all of the kids (except Cormac for obvious reasons) should ALL get their hearing tested every 3 months. And they all need genetic testing. We won't know what will happen with Ciaran even after the MRI and genetic testing. We will continue to hope and pray his hearing loss is stable but the reality is we have no idea. We will only know by keeping a close eye on him for....well, forever. This is the part that sucks the most. Never knowing if all his hearing will disappear or if he will stay the same. I can't even imagine if one day he woke up and couldn't hear anything. It would be so scary to him. I know I would be terrified. How could a kid possibly ever understand it?

Ciaran was such a good boy today. I honestly couldn't have asked for him to be any better. I am so lucky to have such good, cooperative kids. Cormac has never even once given me a hard time about all the mappings, testing, therapies. I wasn't expecting Ciaran to be as cooperative but he was amazing. As for him keeping hearing aids on? I guess we will wait and see....

He did get to get a hot dog from the hot dog truck which made his day. We also made a pit stop at Target on the way home for a little present. And in true Ciaran fashion he picked something out for all three because he wanted to "make his brothers smile". Gotta love him


tammy said...

So glad you have another little trooper on your hands. I thought it was cute how he was excited to go to "Cormac's City"! Too cute! We have Kailyn's hearing checked every few months through her school too. Keeping you all in my thoughts and prayers as a new journey begins.

Kari Gates said...

I have tears of mixed emotions for your family. I know you will all get through this period of unknowns and you and Frank are incredible parents who will face this with the same tenacity as you do with anything else that has come your way with your kids! I will continue to pray for everything that is going on and especially for no more hearing loss!

EmmaVerdona124 said...

LOL that picture is cute!

BTW, I'll help you follow the right line according to the fact I'm the expert on today's techology.

Lucas'Mommy said...

Sounds like you have such great kids! I'm glad he made the day easier with his cooperation level! Wishing you lots of peace in this new journey.

leah said...

What a great kid! Hopefully he'll adjust to having hearing aids very quickly - we haven't had Matt's hearing screened since he was 2 (right after Nolan's diagnosis), but I think they will do a hearing screen during kindergarten registration. Oddly enough, Matt is the one who had a speech delay, and he's the one with normal hearing! :-/