Thursday, January 15, 2009

Today, We Got Confirmation

We took Little Guy to the audiologist today. He doesn't hear. I already knew that deep down in my heart, and I was trying to prepare myself for it. But, what parent is ever really prepared to hear that their child has anything wrong? I've already walked this path with the Beast, but that doesn't necessarily lessen the blow. Having already done this once, I know that there can be amazingly happy endings to this story. But, I'm still scared.

I have a really great group of friends that I share a message board with. I'm the only one with two hearing impaired children in the group, but there is one other mom who has a child with a hearing loss. There are also lots of moms with children who have other special needs. They were the first people I contacted when we got Little Guy's hearing test completed this morning. This is what I shared with them:

I'm exhausted. It's been a loooong day that started at 6am.

Last night, I made the mistake of pounding on a metal pan with a large plastic spoon to see what he'd do, and it made him jump a little. So, of course I let myself think that *maybe* the newborn hearing screens were a fluke. My brain knows so much better than that, but my heart just really wanted him to be okay. Banging on a pot like that right up close to a baby will almost always result in some response because it's SO loud.

Anyway, he had his test this morning, and it started out okay. But, it quickly became clear that the test was showing some kind of hearing loss. The audiologist was kind and upbeat the whole time, probably because we were both very calm and cool. Once all was said and done, she said he definately has a severe hearing loss. (We checked later and found that it's just a little bit worse than The Beast's was at this age...just a tiny bit, though.)

She told us he needed to see the ENT, so dh ran to the office down the hall and got him an appt. for the next hour since we were already all the way down there. He was awesome, and gave us some very, very, very kind compliments regarding our parenting of special needs kids. That was nice, but I was still feeling kind of on edge about the whole thing. We talked at length about The Beast, and my bio-dad, and then Little Guy's current situation. He had suggested we see a geneticist when The Beast was three, but I've never been able to bring myself to do it. There are some things I just don't even want to think about. He strongly suggested it again this time. The King really wants to do it. I don't. I'm just not in that place yet.

From there, we left to go see the Beast's hearing aid audiologist to get Little Guy fitted for hearing aids. She was hoping we'd be able to cancel the appt., but was ready if we didn't. She actually still had the original aids The Beast wore when he was first diagnosed. We'd traded them in for stronger ones when he was about eight months. She rigged up some temporary earmolds, re-programmed the original hearing aids, and we went about ordering him some really strong ones. I think he'll get the same ones The Beast has in his left ear. There was something special and really reassuring about him wearing The Beast's first aids.

While we were there, the ENT dr. called back. He'd been pouring over The Beast's files and found some details he'd forgotten about before. He is 99.9% sure he knows what's causing their hearing loss. It's a genetic link I carry that can only be passed to boys from me. So, my boys can't pass it to their kids, but Pretty can pass it to her sons. And, if the boys have daughters, their daughters can give it to their sons. Clear as mud? So, he really wants us to see the geneticist just to make sure he's right and it's not something else with other potential effects. I don't know if I'm ready to officially hear someone in the know tell me that it's me that has been passing this on to my boys. Based on my knowledge of my bio-dad, I've been pretty sure it was from me all along. But hearing it just...I don't know. I feel like I've done something bad. I can't really put it into words.

He has his intake appt. for early intervention on Monday, and then goes for more hearing tests every three months for the first two years. And the new hearing aids should be here in a couple weeks. We really are WAY ahead of the game on this, but I'm still feeling kind of overwhelmed about it. Your thread sending love and hugs really helped. You guys have no idea. We haven't even told family yet. Just you guys. I do know we can do it. And I know that he's meant to be our baby just as much as we're meant to be his parents. And we love the blessings that come from overcoming hardships. But, this is still going to take me some time to digest. It stings a little. So bear with me and be patient. I won't wallow in this. Or at least I'll try not to. But, be patient when I seem a little all over the place.

Sooo, there you go. That's the updates. Severe hearing loss that the dr. expects to progress to profound just like The Beast did. That's it. We've beat the odds more than once. We are planning to do it again.

After I wrote my message to my group of friends, I decided that I just needed a little more time on my own. Just a little, though. With five kids in the house, too much time on my own means painted walls, clogged toilets, or shaved cats. So, I took a shower. And it felt good to finally just let loose and cry a little bit. After a few days, I should be back to where I need to be in order to press forward and really do the things Little Guy (and my four other amazing children) need me to do.

One thing we did do today was take lots of pictures and video footage of the process. It's important to me to share this with other parents who are just starting the journey with their own children. Our purpose and goal behind this blog is to be there as a resource and sounding board for anyone who can gain anything from it.

I hope to hear from my readers about their own experiences. When others share with us, they provide us an opportunity to learn and grow as well. It's therapy for all of us.


  1. Crying is very cleansing. :hugs:

  2. ((hugs)) and I love that you'll have this blog as a journaling and a resource to others. And I'm gonna lurk b/c I love ya!!

  3. Listen up yahoo group is a great resource for parents of deaf and hearing loss kids. My son has a moderate hl and they have been a lot of help. There are several posters on there that have more than one child with hearing loss.

    We found out that our son (2 1/2) hl causes is from connexin 26 gene mutation. Both my husband and I are carriers and have a 25% chance of having a child with a hearing loss.

    GL in your journey with you little one!

  4. Embarking on the journey a second time does not mean it will be easy or painless. Yes you have the advantage this time of knowing the process and knowing where to go, but it doesn't lesson the pain and darkness. Don't ever feel bad for feeling sad, or if the hurt seems to last longer than you THINK it should. Thanks for starting this blog as it will be a great resource for many.

  5. My son was born with profound loss bilaterally and just got simultanious implants Aug.7th..two days ago! I have enjoyed reading your posts and hope to follow as you progress with little guy! I have always said in everything our family has been through, not only with our son but that if through our experiences we can help another family or learn from them...there has to be a positive hidden in the somtimes crappy parts of life. Well I have learned a lot and found comfort in knowing that I'm not alone through meeting other moms in similar situations and sharing our stories....I want you to know that you have helped me in that way. Thanks! Evan's blog is I look forward in following your sons through their hearing journey and wish you the best of luck!