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!

It's Crunch Time!

Today was a big day! We had our last appointment at NYU today and met with David's surgeon. He's a very smart guy and definitely knows what he's doing...maybe too smart...I got a couple of weird looks when I asked some of my "crazy mom" questions today. Anyway, he basically was one of the first surgeons to implant children when he was at UCSF, so I think David is in good hands. He answered all of our questions about which ear, one or two implants, complications (he has never had any), which brand implant, etc. After all that, it looks like we're going to try to get insurance approval for one implant and then worry about getting approval for the second. Steve and I thought we would have at least a month or two to think about all our questions, but it turns out that we might have insurance approval in a couple of weeks! YAY! David could be hearing well before his 1st birthday! Now we really have to think about which device we want for David, which ear and whether, and how long, we want to wait to see if the new device from Cochlear comes out. These are impossible decisions and I don't know how we're going to make them. But we will, and the upside is that we really can't go wrong with whatever we choose (except for waiting too long for the new device).

Oh, and let's add one more thing to our plate...finding a new ENT. The surgeon looked at David's CT scan and did not see enlarged vestibular aqueducts. Another YAY! One less thing to worry about. If anyone knows a good pediatric ENT please pass the info along...

Lots and Lots

Lots and lots has happened since my last post, which was quite a while ago. David is keeping us so busy these days that I've had little (and by little I mean no) time to post. He is crawling and cruising around the house like a pro (and by cruising I mean basically running) and getting into everything (and by everything I mean the dishwasher, the bookcase, the outlets, the bathroom, the cabinets, the drawers, the door hinges...I think you get the idea). I took him to Gymboree last week and I think we're going to make it a weekly, if not more often, occurrence so he can get his energy out. I am also convinced he's going to be an engineer because he has to know how absolutely everything works. He doesn't care about his blocks in the box - he cares about how the handle is attached to the box and how the hinge allows it to swing. He checks under the hood of his little push car and he knows how to turn his room light on and off. He's also eating like a big boy with finger foods like mini bagels, puffs, chicken, bananas, watermelon and whatever else I can find that is soft and bite size. I can't believe how much he's grown up this summer. Sometimes I wish he would always stay my little baby, but when I see how smart and observant and what a personality he has, I just can't wait to see what he does next.

Refer to post "All Clear". Our ENT now thinks that on David's CT scan, he sees that David has enlarged vestibular aqueducts. Huh? The radiologist at LIJ didn't see that, so it came as quite a shock. By itself, this is something that could cause progressive hearing loss in a child. Basically if a child bumped his head, it would cause fluid to enter the cochlea and kill the hair cells, causing hearing loss. Many kids with this condition lose their hearing early in life. But we already know that David's hearing loss is caused by Connexin 26, so this was a shock to hear. Before getting too crazy, we're going to wait until Monday to ask the surgeon at NYU if he sees the same thing on the CT scan. I find it very hard to believe that there are two things that caused David's hearing loss. Maybe the two things are related? I dunno but hopefully on Monday we'll get an answer.

David also had his last audiological assessment at NYU two weeks ago. They finished the aided testing, which shows that he's hearing speech at 50dB with his hearing aids. Not good, but not bad. At least he's getting some benefit from his hearing aids. Whether this influences our decision to get one implant or two remains to be seen - there are a number of other factors - but it's good to know that if we talk in a raised voice, David is getting some of that information.

We also met with Bill Shapiro, the head audiologist at NYU, on Thursday. He's a treasure trove of knowledge and met with us to show us the three implant devices that we have to choose from. Although he gave us a lot of information, he really didn't say anything to help our decision. Basically all the devices perform similarly and kids do great with all of them. I guess that's a good thing, but really isn't making our decision any easier. The one thing that will probably sway our decision is that Cochlear Corp is hopefully going to get a new device approved soon by the FDA which will be thinner and more water resistant than the previous version.

Other than all that, we're trying to enjoy the last few weeks of summer. We're on vaca from all the therapy (except for speech therapy) and mommy is thankful to not be doing all that driving for a little while!

I think I've rambled on long enough...if I think of anything else I'll post in the next couple of days. Oh, and sorry for the site name change. I want to make this blog more than just about David's hearing, although it seems that's all it's about now, and I thought the new name was just short and sweet.

One More Down

We had our second appointment at NYU today. First, David had a communication assessment. We explained all the sounds David is making and how he responds to environmental sounds and speech. Basically we were told the same thing that all the other professionals tell us...that David is a completely normal baby except for his hearing. At his age, he should be falling within the language development charts in the 6-9 month range. But of course, he isn't, which isn't a surprise, and actually makes our case stronger for getting insurance approval for the cochlear implant surgery before David turns 1 year old.

Then David had another hearing evaluation, this time with his hearing aids on. We were looking forward to this since it's the first aided test David has had. Until today we had no idea what he was hearing with his hearing aids. Unfortunately, he only survived the first half of the test, for his right ear. He IS hearing sounds starting at about 75db in his right ear. Woohoo! I know, this doesn't sound good, but we thought he was hearing NOTHING in his right ear based on his ABR results and his last unaided test. The audiologist said he was probably hearing a combination of the sound and the vibration from the sound since it was so loud. At that point, David was about an hour overdue for his nap, so they didn't get to test his left ear. We'll do that at our next appointment on August 10th. Until then, I think we're going to start playing some rather loud rap music at home so David starts to develop some rhythm!

On other fronts, David is now eating pureed chicken, enjoys driving in his car, and crawling like he's in the army evading enemy fire. He mostly drags his body by his arms, but he's very strong and gets around really quickly! I guess it's time to babyproof the house...

They're Finally Here!

...David's teeth that is.  Yesterday those bottom two teeth finally appeared, after only 3 short months of teething.  But he doesn't seem to care.  Look how crazy happy he is in these pictures!

I should also post here that David is doing really well with his A-V therapy.  This week he was consistently turning to noises, started saying "aaahhhh" for his airplane, and he mimicked me when I said "uh-oh" when he dropped his toy...and he said it with perfect pitch and intonation.  What a little genius.

All Clear!

We finally got the results of the CAT Scan on Thursday from our ENT.  Everything looks normal in David's inner ear which is great news.  The audiologist at NYU had some concern because David's right ear had no response to sound, so now we're relieved that everything structurally is okay.  We also had our first appointment at NYU on Wednesday.  We got to meet some very nice people in the waiting room who just couldn't say enough wonderful things about cochlear implants.  One boy was 21 years old, got the implant when he was about 3 and just finished playing 4 years of college baseball and graduating from college.  Baseball!!  Nevermind college, Steve and I were so excited that he played baseball - our dreams of making David a MLB relief pitcher are still alive!!  We know that David will be able to do anything he sets his mind to, and we'll give him all the opportunities that a hearing child would have, but it's always nice to hear stories like that just to reaffirm your goals.

David did great on his hearing test, despite having a very bad cold.  I guess by "great" I mean that he is hearing bad enough so that it looks like he's a candidate for the implant.  There are still a number of appointments ahead of us for more hearing and communication tests, but these are more of a formality.  

Our audiologist was very nice and knowledgeable, and sent us home with marketing materials from the three manufacturers of cochlear implants.  I don't know how we're going to choose between the three, because success rates seem to be the same for all of them.  Cochlear is releasing a new implant and processor within the next two months (assuming they get FDA approval - cross your fingers!) which may make the decision much easier for us since the implant and processor will both be thinner and lighter.  

On a personal note, I was just told by my boss that I have to go back to work full time or leave the company.  Thank you for making me choose between taking my child to the half-dozen therapy sessions we have each week which concentrate on parent-training so that I can teach my child how to listen and speak, and keeping my health insurance for his surgery.  Thank you very much, I really appreciate your compassion.  I know the answer is that I stay so that David can have the surgery.  But I am writing a whole speech in my head so that when I can leave, I give him a real piece of my mind.  

By the way, David starting eating veggies this week!  Sweet potatoes yummy yummy....

CAT Scan Tomorrow

So I'm finally getting the hang of this blog thing.  I'm still tweaking the appearance of the page and will add some photos soon, but I think I've got it down.  Now I can start updating everyone on what's going on with baby David!

Tomorrow David goes for his CAT scan to make sure everything is intact in his ears for the cochlear implant.  Since his hearing loss is due to connexin-26, we don't expect to find any abnormalities.  I'll let everyone knows how it turns out tomorrow.

We're paying special attention to all new sounds that David is making to see how's he's hitting the milestones of language development.  He's currently behind his hearing peers, but he is starting to make some new sounds, which is exciting.  Last week he started making the "ma" sound and today he starting making the "na" sound.  Not babbling yet, but baby steps.  

Since this is my first post, I want to include a link to a poem by Emily Perl Kingsley that I keep going back to.  It's hard to describe to friends and family what it's like to have a child with a disability, but I think this poem says it beautifully.  Click here http://the-callahans.com/susete/poem3.htm 

Here's another picture of our little star!

Meet Baby David

This is David Eli.  Isn't he cute?