Bad, bad Mommy! I know I've been away a looooong time, and I don't really have a good excuse except that David and his schedule have kept me very busy, but I thought that David's 1st Hearing Birthday would be perfect time to return from hiatus! Hard to believe it's been a year already - I remember his surgery day and activation day like they were yesterday. And yet now it seems like David has been hearing forever. He speaks and understands far more than a 1 year old, and he recently tested as being age appropriate in his receptive language, and about 4 months behind his hearing peers in his expressive language. With a lot of hard work, a lot of driving and lots and lots of talking, we made up for a lot of lost time. I'm so proud of all of us, but mostly of David for working so hard every day to learn. On Friday, we celebrated David's favorite holiday - his birthday - with a reallllly yummy cake and a few rounds of his favorite song - Happy Birthday, of course!
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 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.
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?!!
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.
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!
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.
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!
David was born December 8, 2008. At a month old, we found out he had bilateral sensorineural hearing loss, profound in his right ear and severe in his left. This blog is about our family's journey to get a cochlear implant (or two) for David and to teach him to listen and speak. We want our family and friends to follow David's progress, milestones and successes every step of the way. This is his journey to hearing and speaking and to showing the world about the miracle that will allow our baby boy to hear.
I am mommy to David Eli, born December 8, 2008. I met my wonderful husband and best friend, Steve, on a blind date in July 2004. The rest, as they say, is history, and now we live on Long Island and have our beautiful baby boy. When David was born we learned of his hearing loss through the newborn screening at the hospital. A month and a lot of clapping and pot-banging later, we found out his hearing loss was severe-profound. Four months later we finally found out his hearing loss is genetic, caused by a connexin-26 mutation that both Steve and I carry. I enjoy travel, wine, decorating and raising our little boy.
Moo (for the cow) (11/15/09) Mamama (for mommy) (11/16/09) Aaaahhhhh (for airplane) oooohhhh (for the light) Uh-Oh Hello? (w/phone by ear) (12/17/09) Around and around Ah (for hot) Brr - for cold Uh (for wake up, buidling blocks up) Oh (for open, close and go) (1/13/10) No (1/17/10) row row row (for Row Row Row Your Boat) (1/18/10) um um (for yum yum) (1/23/10) Up (with a perfect "p") (2/1/10) Baba (for sheep) (2/1/10) Roar - for lion Tongue click - for horse Ow (for ouch) (2/22/10) Elmo (3/1/10) Ow (for down) (3/2/10) Ri Ro (for Ring Around the Rosie) (3/2/10) ra ra ra (for run run run) (3/3/10) m m m (for monkey) Hi (3/29/10) On your mark, get set, go (3/29/10) Em (for milk) David begins jargon-ing! (4/8/10) Dadada (4/8/10) Quack Quack (for duck) (4/16/10) Out (4/17/10) Appa (for apple) (4/25/10) Dididi - for Daddy Day Day Day - David (5/8/10) Happa - Happy Birthday to you(5/6/10) Ha - hat (5/13/10) Tongue click (for tick tock) Jump (5/16/10) Bye (5/10/10)
Words/Phrases David Understands
David Mommy Daddy Monkey Push Put it in No Around and Around Tick-Tock Open Close Bye-Bye Put it in the garbage 1-2-3 jump Take it out Book High Five Train Cheerios Open Your Mouth Hot Turn the page Put on your hat Brush your teeth/hair Nose Blow out the candles Light Turn on/off the light Knock on the door Wash your hands Mix Doggie Ball Bus Pots and pans Door On your mark, get set, go Wait Run Clock Baby Horsie Pour Duckie Shoes Blanket Rock and rock and rock (rocking side to side) Pajamas I'm gonna get you Not in your mouth Open/Close the door Diaper Nosey Nosey Belly Belly Button Sit down/stand up Jump Stop Tickle/Tickle Kitchen Horsie Cow Bottle of milk Cup Clock Baby Go outside
Some of David's Firsts
Heard mommy call his name over the vacuum (1/2/09) Danced to music independently (1/4/09) Heard a dog barking down the street and knew where it was coming from (5/16/10)