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!

Priceless

Anesthesia, surgery and recovery: $23,000
Surgeon's fee: $7,000
Cochlear Implant: $75,000
The gift of hearing: Priceless

We just got the Explanation of Benefits from David's surgery and holy friggin' cow!  The total for the surgery, the surgeon and the implant came about to about $105,000!  Private medical insurance sure as heck ain't perfect, but thank Gd for it!

Surgery a Success

I've put off this post as long as I possibly could, being that David's CI activation is tomorrow!  It has seemed like such a daunting task to put into words what surgery day was like, so I've just been avoiding it.  So, here goes...Surgery day was one of the most exciting, scary, and nerve-rwacking days of my life.  In a way, it felt much like the day that I gave birth to David, the day of a new beginning with new possibilities.  On the other hand, putting your baby under the knife can never be easy, but doing it for an elective surgery brings along with it feelings of fear, guilt and doubt on top of everything else.  Neither Steve nor I slept more than 2 hours the night before so we were also physically drained.  Put all that together and were were pretty much emotional wrecks. 

I had the honorable task of carrying David down a long hallway filled with surgeons to the operating room.  That was really a surreal moment, like a scene out of a movie or something.  Kind of like I had imagined, but nothing like I could have prepared for.  At that moment I felt singularly responsible for what David was about to go through.  The mood was lightened a little bit when I put David down on the operating table and my little boy, true to form, refused to lie down and was doing flippity-do's on the table.  The nurses tried to use the mask to put him to sleep, but he wouldn't have it and he flipped over and sat up.  So they put the mask over his face while he was sitting up, and 5 seconds later he was out....

2.5 hours later Dr. Lalwani found us in the waiting room and told us everything went perfectly.  Woohoo!  We were waiting for this moment for the past 10 months and finally, it was over, and evetything went well and the implant was working and David was heading for recovery.  Next time I see the doctor I have to remember to give him a hug becuase in that moment I just didn't know what to do.  But that man deserves a big hug for the incredible gift he gave David, and all the little kids whose lives he's changed.  At that moment, a huge weight lifted from my shoulders.  David was finally beginning his journey to hearing...

Seeing David in the recovery room was one of the toughest moments.  He looked badly beaten, swollen, drugged and in pain.  I don't think Steve or I was prepared for this - the way David looked and the guilt that came from knowing we chose this for him - but we got through it knowing that it would be worth it in the end.  

The night in the hopsital was absolutely miserable.  It's not easy staying in a 5 x7 space with 3 people, a chair, a crib, and no bed or food.  Steve, I'm sorry, but I must must must mention (because I didn't have a chance to take a picture of it) that Steve slept in a crib that night.  David slept in my arms so he wouldn't try to roll over and so his head would be elevated, and Steve curled up in the fetal position and slept in the crib.  Just one more thing from that day that I'll never forget =). 

  

V is for Victory!!!

Finally, David's surgery was approved last Thursday!  It feels like such a victory, I'm so proud of us for sticking it out and making all those nagging and annoying phone calls and getting it done.  I'm sure our surgeon's receptionist didn't appreciate it...but who cares!  We're definitely freaking out a little bit....okay, a lot...after all our little baby is having open head surgery...but we know this is going to be such a cool and amazing journey watching David hear for the first time, and then learn to listen and speak.  This is what we have to do, this is what we've waited 10 months for....so lets go already!

Oh yeah, and David is eating Craisins (yes, dried cranberries...weird), honeydew, edamame, cheddar cheese and lots and lots of peas.  He's also starting to wave, move his hand to say "come here" and today, he stood on his own for like 10 seconds!  Big boy, you're on your way!

...and waiting and waiting

Unfortunately, I have no good news to report on the approval for David's surgery by our insurance company. We found out last Wednesday that they denied coverage, and we submitted additional information for reconsideration Thursday morning, and just a few hours later found out they denied coverage once again. The decision was based on David's age, since the Empire policy only covers surgery at 12 months old. Supposedly the policy is "written in stone". Pardon my language, but what a bunch of BS. In my appeal letter I cited a specific case of a little boy who had surgery covered by Empire at 8.5 months old at NYU (a huge thank you to Julia - it's her little boy mentioned here - for her advice and guidance through this process). So obviously it's not written in stone. There is a precedent and, in fact, many many precedents of kids being implanted younger than 12 months. I'm still trying to figure out why it took them almost a month to deny us based on his age and why they even asked us and our surgeon for information supporting implantation before 12 months.

So now we're on to the next stage of the appeal process, where the case is going to be looked at by an actual doctor...imagine that...independent of Empire's policy. Once our surgeon submits additional research supporting our case, it should take 2-3 days for a decision. Unfortunately our surgeon is a busy guy and getting him to send the info may take lots of nagging and calls to his office. I certainly hope it's not our surgeon that holds up the surgery. That would be a real shame.

So why are we fighting to get David his implant now when the surgery is covered as of his 1st birthday? Why does 2 months make such a big difference? I suppose in the long run...1 1/2 to 2 years down the road, it probably won't. But that's a long time to wait. And David will have to work that much harder to catch up to his hearing peers. Two months doesn't seem like a long time, but when you're waiting for your child to be able to hear and speak, it's an eternity. We just want him to have as easy time as possible catching up. And we want him to be ready to go to a "normal" preschool with his little hearing friends. Seems like a lot of pressure to put on the little guy, but our therapists believe that going to school with other hearing kids is beneficial for language, listening and social skills. Other than that, call me selfish, but I'd really like him to be hearing for his 1st birthday. So, these are our goals, and hopefully our surgeon and Empire are both on board and David will be getting his implant on October 8th!

Still Waiting

For the past two weeks I've been calling our surgeon's office to see if our insurance company approved David's surgery. Again today, I was told not yet. It's under clinical review and hopefully we'll have an answer in the next week or so. I still can't understand why it's so difficult to prove that a baby needs to hear....BEFORE A YEAR OLD PEOPLE! A medical necessity? How about some freakin' common sense. I don't know why 12 mos is the magic number for the FDA - David already weighs more than most one year olds. Anywho, we set a tentative surgery date set for October 8th! David will be exactly 10 months old. Hopefully he'll be hearing by Halloween so he can hear us tell him how adorable he is in his pumpkin costume! I knew the day would come, but I never thought it would ACTUALLY come. Now the dopes at Empire just need to come through.

D is Also for Dishwasher

David is getting very good at expressing himself, particularly when he sees something he likes. He makes this loud, almost forced laughing sound. I'm so thrilled that he is using his voice to tell us that he's happy, even if it is kind of a strange laugh. And what makes David happy? The dishwasher! It's officially his favorite appliance, and when we open it to put dishes in, he goes crazy and races over to try to climb in. David also likes the LIRR which goes by our window regularly (good for when he's in a bad mood and we need a quick fix), and pulling the chain for the fan light in his room.

I took David to Gymboree again today and he had such a blast, especially looking at the other babies, having free roam to go wherever his little baby heart desired, and playing with the bubbles. He's so much more physically advanced, observant and expressive than most of the babies there, except for his language, of course, and his interest in playing with the instruments. I so can't wait until he can hear...he's going to be a superstar!