Thursday, July 23, 2009

Mapping #7---Waiter, there's a fly in my ear.....buzzzzzzzz.....

To preface this post.... yes, it is about a mapping. Yes, it's my seventh. Yes, I realize some people *ahem* in the blogosphere world are overinundated with the newbies to the mapping experience blogging on every last single technical detail. Please feel free to note that not all of my posts are related to my cochlear implant experience and include quite a bit of my exciting life as a mom to a two year old. Oh yes, even from here I feel the deaf peeps out there dropping like flies from the sheer boredom of.... oh.... another mapping? and oh... mommy to a two year old? *smile* This is simply my record of my journey with a cochlear implant and the mappings are important benchmarks in this experience, although they may not read as the most exciting blog posts.

There really aren't too many of us that grew up with a severe to profound loss that are blogging on the experience of receiving a cochlear implant as an adult. From casual observation, most adults with implants seem to be the ones that are deafened later in life. I'm surely not the success story on the take home box of Nucleus Freedom accessories or the DVD passed out before surgery. No one is asking me to talk to new "recruits" and share my heartwarming experience. I didn't go to my first mapping and cry tears of joy. No, I cried tears of absolute horrid misery. For what it's worth, I do have video of my first mapping that I'll likely never share publicly, and I'm absolutely snarling in it (plus the one year old in the background climbing furniture is absolutely priceless.) :-P So, in the spirit of my journal, I'm recording ANOTHER. FLIPPING. MAPPING. SESSION!!!! ....and if someone else wants to think about doing this and reads my blog, they'll get as always... the good... the bad... and the ugly from my point of view. So... that said... on with the show.

Today's mapping was actually an emergency session for me... not necessarily of the most dire kind, but I was fairly frustrated. I've been experiencing so much static popping and background noise that it was really disrupting my listening pleasure. To compound matters, while I could still hear fairly well with the CI, I wasn't having any new break-throughs and sound clarity, especially with voices, was regressing. I started asking my husband, James to repeat things several times or opted out of conversations with him because it seemed like too much energy to comprehend. Talking to him on the phone has been short and quick because his words started sounding slightly muffled. I could almost catch what he was saying, but I missed more than I was getting, and that wasn't without serious concentration on my part. My video phone needs to be re-routed with someone from the company and is down, so I haven't even had that as a back up lately.

My audiologist fit me in on a day's notice by seeing me yesterday morning (and not for lack of not having too much on her plate already... She's just cool like that... but I've established that already in previous "ode to the cool audiologist" posts. :-) None of the maps were working that we were trying out, so she went ahead with both tests to check the electrodes (listening to the beeps and the neural test... and if someone wants to give me the official name to each to refer to once and for all, I'd appreciate it.) The gist of it was my old map was out of compliance and causing distortion, but something about my electrodes has changed slightly and is now being "monitored". My audiologist consulted with another audiologist, and she assured me that my electrode test was within normal range, but yet... big yet.... it was different enough to need to be tested again in 3 weeks to make sure all is well. *IF* there is a problem it's with the internal equipment... yep... I said I would share the good, bad, and ugly, didn't I? I'm being monitored to make sure the equipment locked and loaded and sealed inside my head is functioning fine. Nucleus has great reliability, and my testing isn't cause for alarm, but it's never fun to have to wait and make sure everything is actually okay.

Meanwhile, my audiologist finally gave me a mapping that clicked and made me go "ahhhhhhhh". Two hours after I arrived we were just starting to get somewhere. I felt so bad for her because she is a perfectionist, and I knew my situation being tossed at her yesterday was a handful and not fun. She said she gave me a map that most people would hate. She says it's pretty unique. It's in compliance with my electrodes so that distortion shouldn't be a problem like it was when I arrived. She basically said she did it by changing the parameters and beyond that I have no idea what she did... just that it worked at the time.

She wanted to do some tests before I left. I sat in the booth and could swear there was electrical buzzing. She came in there and listened and said there was something so I assumed it wasn't static. So much for soundproof booths, right? She actually told me that's a falsehood anyway and that these were just more sound resistant, not sound proof, not something my little deaf self ever noticed. The test scores were ridiculously great. In June I had 79% on my sentence test (HINT test). Today? 96%! Sur-stinkin'-real! :)

Right when I thought the guy on the recording and I had a blossoming relationship, he trampled it with his horrible one word test. This is the first time I've had this test post-CI, and I was blown away by how fast the guy went.... He would say "ready...*quick pause*... boat" one second pause "ready *quick pause* make"... Jeeeeeeeeeeez Louise!... I couldn't hear myself think because half the time I was saying what I thought he just said as he was saying "ready" before the next word, which would make me lose my thought, panic, and ...then... rinse and repeat! I could never just relax and catch up with that guy... He definitely was NOT from the south... and that test was LOOOOOOOONG. I do. not. like. that. test. I scored 64%. I liked my other much score better. :-P

For the last test, we did the usual bells and whistles to plot the lines on the audiogram. Seriously... not bad.... 15-20 decibels straight across the board. Last time it was 20-25 decibels... so it was about the same... but a little better. One example of how much my audiogram is changing... at 6000 Hz, I have a 120 db hearing loss (and that is with or without the hearing aid on)... We are talking... deaf as a doorknob... flat out.... not a peep to be heard...completely deaf.... but pop on the CI on it's 15 db. Boggles my mind still. Technology is pretty amazing. Needless to say, my brain hears sound at that level.... it doesn't necessarily mean it's processing information at the level, but it's all uncharted territory for my noggin anyway.

So fast forward to this evening.... and the static is back somewhat, and it is annoying me to a degree. I can still hear well in spite of it, but right now I'm relaxing without it on because I need a break from the buzzing in the air. I had it off earlier when I was getting Aidan ready for bed, and I couldn't understand anything he was saying. I didn't realize just how much I have come to rely on it for understanding my son, and that was extremely frustrating to pretend to go along with what he said just so I could finish getting him ready for bed at the time. I put it back on while we read books because we do like to talk as we read. I am glad that I've started teaching Aidan some basic signs, and this just reinforces my desire to continue that so we don't ever have a reason for not being able to understand each other. The static's not too bad, but I'm concerned of course. Most likely this will work itself out in time. I'm not sure my audiologist is going to be really thrilled to open my email in the morning and read tonight's news, but she did say she will be seeing a company rep this week so she can go over my case with her.

....and that is the bare naked truth.... the good, the bad, the ugly visited yet again....

Wednesday, July 22, 2009

I Lub You!

When Aidan was a baby, I thought briefly about teaching baby sign language classes. I should be a natural, right? I am deaf... I am a teacher (okay...currently on a 4 year "break" at the moment from that particular profession but 12 years in combat counts for something)... and I had a beautiful, dimply, sweet, and non-complying little wild bambino. *sigh* It's the non-complying part that killed the deal for me. Bless his heart.

Here I am... Deaf mom extraordinaire with the little wonder child she can hold up to demonstrate to her classes and say... "Look! This is what your baby can do!" Only problem? The child. would. sign. nada. *pulling hair* Worse yet? All the hearing moms I talked to that claimed their two week old could sign the alphabet, even count to 100, AND sign every animal at the zoo. Yes, they were just two week old babies, I'm sure. Yes, these moms were all online so they might have exaggerated a bit. No matter. I couldn't lie. I said... he can sign "up". Yes... he could point up. It's a sign. It counts.

I threw in the towel. I said to myself, when he can talk, I'll start teaching him signs! He'll learn! He may learn at the age when it's not so hip anymore, and the other moms have moved on to compare how colorful their children's SPOKEN language is... and how long their sentences are, but maybe we were meant to march to our own drummer because sentences in this household for the two and under crowd are pretty. darn. short.

So... one of my child's biggest hobbies is raiding the refrigerator. Fortunately his dad and I are getting much better about locking it since the egg episode (don't ask!) He will come to me and point and yell for "cheese, cheese, cheese!" So in the name of food, my child has finally begun to learn a few signs willingly. He can sign "Mommy please", "Daddy please", and "thank you" which are much more pleasant ways of being directed to food. He is a little sponge and tries to copy every sign I teach him. He finds it fun! Yay! This is much easier than trying to demonstrate anything visual to a hyper busy baby that is much too busy looking at anything and anyone but his mother when she is actively standing in front of him squeezing her hand and exclaiming, "baby... look! look at Mommy! Milk! Milk! Can you say milk?" Ah, those were the days!

He loves to sign "dog" and his attempt to sign "duck" is priceless. He will usually just scratch his head behind his ear when he is attempting to sign "cat" but he will verbalize "Sassy" after the cat in Homeward Bound, so I have to give him points in originality. My favorite signs to do with him? "I love you!" Aidan says something along the lines of "I lub you!" which is really cute. I lub him too.