Thursday, October 23, 2008

CI candidacy approval!

It's hard to believe that Lucas is 10 months old today! What an active, happy boy he is too! He army crawls so efficiently that he's not particularly interested in learning to crawl with his belly off the ground... oh well! He's pulling himself up, climbing over things and follows us around the house. He's very social and still vocal, even when he's not wearing his hearing aids. He still continues to sign "milk", and we think "eat" also. He also waves and babbles in sign! That's really fun to see!

It's been an eventful month for Lucas! On October 7th, we had 6 appointments with Lucas at CHOP, including his team evaluation for the CI. We met with a social worker, a SLP, an educational consultant and one of the CI audiologists. Lucas had more booth testing, and we finally have an audiogram! His unaided pure tone average is 120+ dB bilaterally. Response to speech information was obtained at 105 dB in each ear. Repeatable responses were noted at 110 dB at 250 Hz for each ear also. The CI audiologist also noted that although the responses were consistent, they may have been due to vibrotactile stimulation and not necessarily auditory stimulation. Basically, Lucas is quite profoundly deaf, and is getting NO benefit from his hearing aids because of the level of profoundness.

A week after those appointments we got a phone call informing us that Lucas is indeed a candidate for CI surgery from an audiological standpoint. We also had a phone call from Dr. K at the beginning of October with the results of Lucas' most recent MRI. His inner ear structures are all intact, meaning the cochleas are not malformed and the auditory nerves are present. That's great news for CI surgery! He did inform us, however, that Lucas has enlarged vestibular aqueducts (EVA) in both ears. Normally, the concern with EVA is progressive hearing loss, but Lucas' loss is so profound that it doesn't matter. I still have a lot to learn about EVA, but I don't think that it has any other implications, nor is it treatable, so it's just kind of there, and is simply helping us piece the puzzle together as to why Lucas is deaf. Dr. K also told us that from his standpoint, Lucas is also a CI candidate.

So, we have approval from audiology, ENT and insurance, so all we need is a surgery date. Yippee!!! Well, there are a few more steps, but the candidacy process is over, and this dream will soon be a reality! It still doesn't seem real that we're at this point already.

Last Friday Lucas had ear tubes put it at CHOP. We left the house at 4:45 AM to arrive at 6:15. It was a simple procedure, although he still had to be under general anesthesia. We were home by 2 PM on Friday and then had the weekend to be with Lucas following surgery. Now when Lucas has his CI surgery, they won't have to postpone it at all because of fluid on the ears. I'm also interested to see if he tests any higher in the booth because of the tubes. We'll see at Thanksgiving.

Because of his level of hearing loss and lack of benefit from hearing aids, the CI decision for us is a no brainer. The earliest he can be implanted is Christmas. We plan to implant in January and activate in February. Pending official approval next week, I will be taking a leave of absence from my teaching job for the rest of the school year following activation, and not returning until next September. I submitted my request on Tuesday. Lucas' therapy sessions will increase to once a week each (SLP and TOD), and we will be heading down to CHOP regularly for follow-up appointments. His needs will best be met with me at home, and that's where I really want to be. We know that a CI is not a cure for hearing loss, and that Lucas will not magically hear upon activation. It will take time, lots of work and even more comprehensible input to help him make sense of the noise that he will be hearing. And I'm so excited about it.

For now, we continue to sign with him as much as possible and to the best of our ability. It will not be as much of a priority after activation, but we still have 3 months until surgery, and 4 months until activation. We also want him to appreciate deaf culture and be able to be an integral part of it if he so chooses. Plus, he needs another language under his belt in addition to learning German and Spanish from Mommy and Daddy very, very soon (wink, wink).


Christian's Mommy said...

Congratulations on the approval! It must feel like a huge weight lifted off your shoulders.

I too left my job to be home with Christian full-time. You'll be amazed at how rewarding it is for the both of you. :)

Lea said...

That is such wonderful news!! We are so proud of you and Nate for all your patience and hard work. You are absolutely wonderful parents and Lucas is blessed to have the two of you and, of course, vice versa!! What a wonderful family you have. Congrats Lucas. See you over the holidays! Love, Lea Dave Tyler and Logan

tammy said...

With all the therapies, I too decided to stay home, which I don't regret one bit. With our recent move up north, it will be a challenge, but one I know we will conquer! It is so well worth it! Best of luck in everything exciting yet to come!

Angela said...

My son Alex had his bi-lateral cochlear implant surgery 10 months ago. I know firsthand the roller coaster of emotions that you must be going through. I have enjoyed reading your blog. I talk about my son Alex on my blog as well. If you have any questions, please feel free to ask me.

Aiden said...

We are so happy for you guys!!! We will look for the updates!

Bill and Shelly said...

Glad you are one step closer to the surgery. Will deep looking for up dates

Dr.Rutledge said...

Hi Lucas' Mommy,
I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you in the Hearing Loss & Deafness Community on Wellsphere, a top 10 health website that has well over 2 million visitors monthly.

If you would like to learn more, just drop me an email to

CIMKO said...


I'm Iz and I've been following your son's journey with CI for some time now.. I used to have a blog, but I had to delete it, and now I've created a new one and also a website to help other parents of CI kids with a lot of information about Cochlear Implants and communication methods... I'd like to invite you to join the website and also if you can add the link to your blog, that would be wonderful!!! :)

Here is Kauan's blog:

Thank you so much and keep in touch!!
Iz and Kauan :)
PS: Do you have facebook???