Friday, August 28, 2009

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!

Monday, August 24, 2009

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...

Saturday, August 22, 2009

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.