Tuesday, February 16, 2010

You know you have a child with a cochlear implant when...

This post is "adapted", well stolen, really, from a post I just read by Lucas' mommy.  I just loved it so much!  I've made a few tweaks to fit my personal experience.

You know your child has a cochlear implant when...

...his hearing aids made better chew toys than amplification devices.
...you've developed dog-like hearing to detect the feedback from his hearing aids, and the beeping of his processor.
...you wonder why anyone would try to teach the alphabet in the bathtub when your child can't hear in the bathtub.
...you worry about rough play, tumbles, jumping, etc. because his coil might fall off.
...you have a fear of plastic slides, cozy coupes and fleece.
...you carry along static guard and dryer sheets when you go to the park.
...you find yourself pointing out every sound that you hear (while pointing to your ear).
...you pop his coil off once and a while and yell really loudly, to make sure that he really can't hear without it.
...you've ever gotten strange looks or questions while in public.
...you know what "ear gear" and "critter clips" are.
...you never leave home without extra batteries, a back-up processor, a remote control, or extra wig tape.
...you've discovered a contraption, like an aloksak or food saver bag, to allow your child to hear while swimming.
...you check out EVERYONE's ears to see if they wear hearing aids or cochlear implants.
...you decorate your child's CI to make it look "cool".
...you've ever been driving and gotten hit in the back of the head with a flying processor.
...you've ever pulled the car over to take his processor out of his mouth.
...you've had to search high and low for a processor that your child has mysteriously hidden somewhere, maybe even having disassembled first.
...you know few, if any, other kids (or even adults) with cochlear implants. You've made most of your connections through the blogging world or CI Circle.
...you've taken the John Tracy Clinic correspondence course.
...you are a member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Hand and Voices, or the American Society for Deaf Children.
...you've ever received or know of others who have received hateful comments from a member of the Deaf community.
...you panic if your child doesn't respond when you call him
...you constantly test him to make sure he's hearing.
...you've mastered every onomatopeoia.
...you refer to his processor as his "ear".
...your child takes off his "ear" because he's mad, frustrated, or doesn't want to hear you anymore.
...you spend many hours a week in formal therapy, but all playtime is unofficial therapy time, and you're always looking for a teachable moment.
...you narrate everything that you do, and even elicit strange looks at the grocery store from your repetitive comments like "up, up, up you go", "do you want a piece of cheese? hmmmm, cheese? I like cheese. Do you like cheese?"
...you're completely sick of the sound of your own voice by bedtime.
...you hide and call your child's name to make sure he's hearing.
...you've ever vacuumed under the crib while your child was napping.
...you've endured an hour car ride with the processor beeping every 15 seconds.
...you hate putting your child in the car, in the stroller or in the high chair because his processor inevitably falls off.
...you interrupt conversations to say "Hold on, my child is beeping"
...you've stopped going to the mall because he can't hear you so well there.
...you know which sippy cups are good for speech development and you pass this information along to your other mommy friends.
...you marvel every day at how the simple act of attaching the magnet allows your child to go from 0 to 95 in an instant.
...your child has 2 birthdays - a real birthday and a hearing birthday.
...you can't imagine life for your child without it.

Thursday, February 4, 2010

Let's Do It Again! Let's Do It, Let's Do It...

Sorry, those lyrics just got in my head from watching a commercial featuring the Black Eyed Peas.  Fitting though, because yesterday we got approval for David's second CI!  Without even a peep from the insurance company!  This is so exciting!  I'm very nervous for how David is going to react because now he's far more aware of what's up than he was 6 months ago, but it's great that he will be bilateral so young.  I'm waiting for the other shoe to drop, so I'm excited with a lower case "e" (little reference to American Idol).  I'll be calling them tomorrow to make sure everything is set, so I'll keep you posted.  Cross your fingers! 

I also was sent this study by our AVT which basically says that kids with CIs view their quality of life similar to their hearing peers.  This is what it's all about, right?!!

Monday, February 1, 2010

Interesting Connexin Study

Here is an interesting study about Connexin-26 related hearing loss from the CI Circle News blog.  Basically there is a 50:50 chance that hearing could deteriorate.  So, David's hearing in his left ear (currently severe - borderline profound at 90 db HL) could worsen into a range where his hearing aid would do little good.  For now, I'll just add this to the "Pro's" column on my list of reasons to get a second CI for David.  

Sunday, January 24, 2010

David Goes Bilateral?

David had his second post-surgery check-up on Friday and all is well.  He has a cold so I was afraid he might have an ear infection, but he didn't, so the appointment was pretty much uneventful.  Tomorrow the doctor is submitting paperwork to our insurance company to get David's second implant approved.  I'm expecting we'll have to jump through the same hoops we did for his first implant.  We get denied, then we get denied again, then we appeal and get denied again, and then we appeal a second time and finally they approve the surgery.  At least this time we know what to expect and what we need to do.

I don't think Steve and I are ready to get David a second implant tomorrow, but I think we are almost "there", and we want to be able to schedule surgery ASAP when that day comes.  We have seen the amazing results with just one implant, and we know that with a second it will allow David to hear better in noise, be able to localize sound, give him "fuller" sound (think surround sound vs. one working speaker), and will allow him to not have to work as hard to hear.  But at the same time it means taking away the residual hearing in his left ear and being committed to the implant technology available today (since the internal part can't be replaced unless there is some kind of malfunction).  I know what the right choice is, I know what is best for David, but you're asking the most indecisive girl on the planet to come to the most definitive answer.  Hopefully it will take me and Steve (and the insurance company) just a few weeks to come around, because we have a tentative surgery date for March 11th.  Mark your calendars!

Sunday, January 17, 2010

Happy New Year!

Happy New Year! Yes, I'm two weeks late, but things have been kinda busy around here.  I can't believe I'm looking at the calendar and it says 2010 and David has been around to see three years!  Looking back at 2009, I think I will remember it as the hardest, most emotional, and proudest year of my life -  the year that Steve and I went through the joy of having a new baby boy, the grief and sadness of learning about his deafness, the anger and blame that came with the diagnosis, and the year that we became experts on cochlear implants, made decisions that will change David's future, and became advocates for David.

2009 gave us David's CI surgery and his first hearing day.  His progress has been nothing short of amazing (in my opinion) in just two short months.  I just can't wait to see how he develops in the coming months.  2010 has much in store for our family, and there are many unknowns.  Steve already started a new job last week.  Maybe a new job for me?  Maybe a second cochlear implant for David?  Hopefully a much needed vacation?  I have many hopes, dreams and worries, but am certain that 2010 will bring us more joy than we know what to do with.

Wednesday, January 13, 2010

Happy Happy Birthday Baby!

Obviously this should be dated December 8, 2008.  I've been neglecting David's blog for a while, and I didn't realize that the post I wrote on his actual birthday didn't post correctly.  So...I really can't believe how fast a year has gone by, and oh what a year it's been!  You've certainly kept us very, very busy David.  But you've also made us so happy and proud.  We've enjoyed watching you learn and grow into the cutest little boy with your crazy head of hair.  You keep us smiling and you constantly remind us of what is really important in life.  Happy 1st Birthday David!

Wednesday, November 18, 2009

Happy Hearing Day!

November 5, 2009.  Happy Hearing Day, David!  This is the beginning of a new chapter in your life, where anything is possible, where your discovery of this noisy world begins, where your story begins.  You have made us so proud and happy already, but we know that now you will really start to soar.  You already have such a wonderfully happy personality, but we just can't wait to see how you change and interact with your new world.  We wish you all the joy, love and success that such a sweet little boy deserves, and we hope that you always remain curious about the world around you.  

Okay, enough with the mushy stuff...

I was hoping to do this post a little while ago, but I was waiting to put the video of David's activation on YouTube to share.  Turns out a video that is about an hour long will take at least that long to upload.  We need to figure out how to edit the video and then I'll post it. 

Activation Day went off without a hitch.  All of David's electrodes were working properly and like a good little boy, he responded to most of the sounds sent to the implant from the audiologist's computer.  After hearing the first sound (a tone burst) he even smiled and got a little excited!  He turned to the little dancing piggy when he was supposed to, and he didn't seem too upset by the new sensation of hearing.  He kept taking the processor off his ear, but no big deal, I just kept putting it back on his little head.  That is until the processor was switched to hearing speech, and then David just started crying and refused to put the processor back on.  Usually nothing fazes David - he's not scared of other adults or kids, dogs, heights, new places - nothing really scares him.  But he was truly scared by hearing us speaking to him.  I had heard stories and seen videos of other kids' activations, and most kids gets pretty scared and start crying, so I knew it was completely normal.  But for some reason I had this fantasy that David would just turn to me with a big smile on his face and say "Oh, thank you Mom for getting me this cochlear implant.  I love to hear.  I love you!"  Well, not really, but I did think that David would react differently than other kids, that he would be a superstar and just be totally okay and happy at that first moment of hearing.  I think Steve and I were a little disappointed that the moment was kind of anti-climactic.  We were hoping for something very dramatic - well, it was dramatic for David - but it just wasn't as we had imagined.  No, David didn't start speaking at that moment and he wasn't happy at those first sounds, but he certainly has shown us that he is a superstar.  He adapted very quickly to hearing and to wearing his processor and has started babbling (take a look at the new sounds on the sidebar), playing with his toys, clapping and generally is just a happier kid.  I thought he had a great personality to begin with, but now there's a real joy in his eyes, like he realizes he was missing out on something and is so happy to be experiencing it now.  We are so happy you are too baby boy!