Friday, January 3, 2014

Jack's Cochlear Implants Are Activated!

It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly.
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us.
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it.
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.
Thanks for all the help and prayers!!! Here is Jack hearing! It is short but sweet!

1 comment:

  1. I read this when you posted but haven't had a chance to comment. Congrats on getting through the surgery ordeal and activation. So exciting! How have the past 2 weeks been?