Wednesday, July 31, 2013

Reality Check

It happened. Someone dropped a big ball which would lead to postponing my son's surgery for at least two months. Well, this is actually the second time the ball was dropped, but this time we're out of wiggle room. Did Ticked-Off-Momma-Bear-Me yell at anyone to make something happen? NO. I took a moment to calm down, made a couple more phone calls, was on my nicest, best behavior, and managed a fix.... Hopefully. The young gentleman who has been helping me picked the ball back up and fixed the problem, hopefully.
 
At the end of the conversation we just had he said, "If you need anything else, please don't hesitate to call me." I replied, "Well, thank you, sir, but if you hear from me again, it will be face-to-face because if those documents aren't delivered by tomorrow morning, I'll be picking them up by lunch and hand delivering them myself." That would be a quick VA-Philly-Baltimore-VA trip that I would rather not make.

The cochlear implant is a miracle and the insurance is wonderful, but I am just so TIRED of chasing loose ends every time we move. New schools, doctors, paperwork, files...

One foot in front of the other, breath, repeat with other foot, keep moving forward...

Lessons for the Day: Keep copies of everything, all paperwork, in physical and digital formats. Keep records of people with whom you have spoken on the phone, the number called, the date and time called, and notes of what was said. When papers are being sent, when you are told "it's in the mail", get a tracking number and TRACK the package. When the package hasn't been sent, call back in your nicest, firm voice, armed with all of the notes you've been keeping, and get to the bottom of whatever went wrong. Take more notes.

Tuesday, July 30, 2013

Video: How a Cochlear Implant Works

My son has a spiel he goes through when telling people about how his cochlear implant works. He's been doing this since he was three, and is very good at answering questions, too. Yes, I'm still hoping he'll post soon, but he's getting ahead on some classwork before his surgery next week.

In the meantime, here's a very nice, short video describing how a cochlear implant works. It doesn't matter how long we've been living with cochlear implants, I am still in awe of how the technology can bring sound to many deaf people.



Maybe I'll just compose a list of questions for my son, to get him ready to talk about his implant. What would I ask him? Hmmm...

Rush Limbaugh

I haven't touched this blog in YEARS. Looking at the stats, though, it's still been getting anywhere from 200 - 800 hits/month. Which words searched generated the most hits on the blog? Anything with: Rush Limbaugh deaf cochlear implant.

Yes, I blogged about Rush Limbaugh getting a cochlear implant. The day before Big Kid's first cochlear implant surgery we were driving home from the hospital and stopped at a grocery store to pick up milk. When I got back into the car my husband said, "You'll never believe this, but Rush Limbaugh just announced on his show that he's going deaf." He was right, I didn't believe him, but it was true. That was in October of 2001. Big Kid was implanted the next day, and Rush Limbaugh was implanted about two months later. And I still haven't met Mr. Limbaugh.

Whether they agree with his views or not, it's still fun telling people that Rush Limbaugh is totally deaf, but still doing his radio show w/use of his cochlear implant. My boys have the same implant. COOL BEANS!

More on Rush Limbaugh's cochlear implant:
     The Haney Project "Rush Limbaugh's Cochlear Implant"
     The Rush Limbaugh Show: Questions on the Host's Hearing
     The Rush Limbaugh Show: The Facts on Rush's Hearing

Sunday, July 28, 2013

Oldest son is getting a 2nd CI

Hmmm... My oldest son is getting a second CI, and I'm finally revisiting this lovely old blog of mine. It's been about four years since my last post, and I see posts on the first page that are about seven years old. Yikes! After some lucky guessing, I figured out the passwords to this Google account and am back up and typing away. And I'm just not sure where to start.

Big Kid has had his first cochlear implant for almost 12 years. We've had absolutely no problems with his cochlear implant whatsoever, internal or external parts. Other than using them so much that some physical parts wear down a bit. We've discussed with him the option of getting a second implant for years, and he's finally now going for it. He knows he'll be able to hear better with the second "ear" (after much habilitation). It will also be nice to have another ear to hear with if the first one ever does stop working for whatever reason. We also now have the insurance to cover the surgery, while my husband is still on active duty in the Army. These are just a few of the considerations that we have discussed when thinking about a second cochlear implant.

Big Kid also wants to hear while he's in the pool, so he's been looking at and thinking hard about the Neptune processor. He would go for one Neptune processor and then hopefully hold onto a certificate for a second processor later. As an adult, I'm not too sure that's what I would lean towards, as I see some other huge advances coming with the AB processors, and I would probably choose two of the new ones, but this isn't solely my decision. My boy is now a teenager and wants to hear what the other kids are saying at the pool, go to a water park and be able to hear, so he very much likes what the Neptune has to offer.

The process is moving along quite quickly for us, and his surgery is now only nine days away. Looking back through my posts (I started with the oldest posts and read through most of them in the past couple days), I was reminded that after his first surgery it was almost a week before his balance improved enough for him to walk around again. Big Kid's balance is definitely an issue, with his inner ear malformations and whatever other issues he has. We have to be prepared that this may be a problem after this next surgery.

Big Kid also understands that once his second CI is activated, it will take a lot of work for his ear to really understand what it will be hearing. I know Big Kid is a great boy, willing to work hard when necessary, but reality is that he's also a teenager. I'm not sure what to expect.

How's he doing otherwise? He's had his first implant for almost 12 years. We are an Army family and move quite a bit. He's lived in 8 homes and is in his 11th school. Last year as a freshman in high school, he was fully mainstreamed w/o even an FM system and received all As and Bs, with mostly advanced classes. He received a B in Arabic, and I am not kidding about that. The class would use computers for part of the class. The headphones he used rested easily over his t-mic, giving him great access to the sound. Big Kid tested out of speech therapy in fourth grade. As for the FM system he's used in the past years, he chose not to use it this year at all. I don't know if it's because he was self-conscious about using it or not, but as long as he kept up with his classes, I supported his decision.

On the other end of the spectrum is my youngest son, T-Man. He is now in fourth grade, using his CI, but still prefers to communicate mostly through sign language. T-Man is deaf but also has some additional challenges. His receptive language with his CI is pretty good, but he is not good with his expressive language, and doesn't use much speech at all. His speech is still improving small bit by small bit, and we keep working on it. In my book, though, any and all communication is great.

My two boys have the same medical diagnosis for deafness, and both of their CIs are helpful to them, but they are each very unique in their own skills and abilities. Their cochlear implants are not a "cure" for their deafness, but definitely a tool that helps them to access sound. Our whole family continues to use and learn more sign language, too.

I'll post more later, especially re: the upcoming surgery, activation and habilitation. Big Kid has also said he wouldn't mind posting in the future, too. ;)