Wednesday, October 31, 2007

Five more days!!!!

I can hardly wait!! I have been waiting for this for so long! We started the whole process to get this second implant back in April. Patience has never been my strong suit, so the wait has been absolutely grueling. Now that it's finally almost here, I keep waiting for something to happen to make it not happen...I'll get sick, or the doctor will get sick, or something...it's hard to believe that it's really going to happen after all this time!
I got an e-mail from my friend Shari yesterday inviting hubby and me to come spend the night with her and her hubby on Sunday night. I met Shari in OKC at the HLAA convention and have had a ball getting to know her over the past few months. I tell everyone she's my twin sister...we look similar, we have similar personalities, and we're both deaf...what a pair! She lives five minutes away from the outpatient surgical center where I'll be having my surgery Monday morning....which is great, since it's over an hour from our house, and I have to be there at *ack* 6 am! So now I have something else to look forward to!
This past week I've been INSANELY busy....four bedrooms in this house, and we're ALL changing rooms, which has been a TON of work. All of them are done except for our old bedroom, which Will is moving into. I have to go down there and finish cleaning it out and then we have to paint it before he moves down there (it's a gorgeous aqua color right now but he's not big on it). That's what I've been doing all week...argh! I've gotten sidelined quite a bit: we had to go shopping for fall clothes last weekend and we had a cookout that took up a good bit of my work time. I had the Pneumovax 23-valent shot on Friday (AB recommends that to prevent meningitis, and the surgical center asked if I'd had it when they called to confirm, so apparently, it's a big deal!) and felt crummy all weekend...I still worked....just felt crummy doing it. I still have a bit left to do...but we'll get it done! :)
I love reading CI stories, but the little ones and their parents have a special place in my heart. Ethan had his sequential bilateral surgery yesterday and came through just fine...his mama has a picture up :). Erin got her second implant October 1st and will be activated tomorrow...I am excited about that update...she has done great with her first CI and I know she'll do even better with her second!! And, if you want to see something that just melts you into a puddle of goo (it did me), go check out Landon's page. Landon had both ears done at once, also on Oct. 1st, and was activated Monday. His mom posted videos...and they had me grinning from ear to ear....DEFINITELY worth watching!!!
We won't be doing the trick-or-treating thing this year...since we have church. We might have to take the kids to Dairy Queen or something to make it up to them...which is fine with me. I am not a fan of Halloween...walking around in the dark is no fun for me, although the kids love it, so I've always indulged them. The girls did dress up a bit today for school, so I think they're fine with it...thankfully :)
Hope everyone's having a great week!! Love y'all....

Friday, October 26, 2007

Not much longer now....

...my little ticker is fast counting down the days until my second CI!! Just ten more days! I was kind of worried that the last few days would drag by, but I overbooked myself for the next few days and have been so busy that I think they'll fly by. Everyone in this house is swapping bedrooms and now that we've gotten started on it we have to finish it...at this point I actually hope we even have the time to finish!
If you've arrived here via the Advanced Bionics home page, you should know how excited I am that you're here. When Gloria Garner asked me if she could put my blog on the AB page, I immediately said yes. I love blogging and I have met so many new friends through the blog community over the past few years. When I started researching CIs in the spring of last year, I had to really search to find cochlear implant blogs, and the ones I found were often out of date. The ones that I found that were updated and maintained have become close friends...we have supported each other and encouraged each other, shared worries, fears, and joys. Bloggers by nature are sharers, as a rule, and they're so easy to get to know. If it's your first time here, check out my other CI blog friends...I have a whole list of them in my sidebar...all of them great reads!
I sent an e-mail to a few friends saying that the blog was up on the AB webpage, and heard back from my surgeon. He said, "Looking forward to seeing you for your surgery!" If that's the case, I just hope he gets to me before the anesthesiologist does...last time he just barely made it, as the guy was fixing to shoot me up with amnesiacs...if he'd come a minute later, he would have been able to talk, but I doubt I would have remembered it!
I went for a mapping on Wednesday...my last one before my surgery. I asked my audiologist if she'd consider putting one of my programs back on HiRes P to see if that helped my speech comprehension. It hasn't ever been GREAT, but it was actually better before I switched to the 120 programming. I think that, in my case, as far as speech is concerned, I need straight, simple sound. The 120 programming is the one to use for music...it is a much fuller, rounder program, and it picks up many more sounds than the HiRes does....and to that end, I was comfortable with our decision to leave it on the second slot. So now I have the basic HiRes P on slot 1, HiRes P with 120 programming on 2, and a 50/50 split on program 3 (I use it a lot to Direct Connect to my laptop). So far, I'm pleased with the results. I played with it at church Wednesday...switching back and forth while the Bible class teacher was talking (I'm sure I was horribly distracting). His voice sounded clearer on HiRes P to me...when I switched to the 120, it picked up more subtle nuances of his voice, but since my brain doesn't handle all those subtle sounds well, it just kind of echoed and sounded muffled. So it was back to HiRes P for the remainder of the class.
After class I tried the switch during the singing, and this time the 120 programming was the winner. Music on HiRes P was just OK...a little flat. I had a harder time picking up the soprano and overall it didn't sound as good. When I switched over to the 120 programming, it sounded much better...more like I remember it (still not exactly, but much closer). So I think I'll keep it this way for the time being...HiRes P for everyday speaking situations, and HiRes 120 for music (and I listen to it a lot, so it's worth keeping). I hope that as my speech comprehension picks up I'll eventually be able to switch back to the 120 for speech too, but right now it's just more noise than I can handle...it's too hard for my slow little brain to pick out speech with all the extra information it's getting!
Gonna get off here and get to work...I have a lot to do and not a lot of time to do it!! Oy!

Tuesday, October 23, 2007

This, that, and the other....

...I really wasn't going to try to blog tonight, but I have several things that I wanted to post and figured I'd better do it while I could still remember some of them!!
First news item...I have been thinking about this for a while, but am just now getting around to blogging it. I'm pretty sure that most of my CI readers have already gotten the information regarding the latest concerns over meningitis, but for those of you that haven't, in a nutshell, here it is: There have been two recent deaths in children with CIs due to meningitis, and at least one of these children was not fully immunized against the disease. While meningitis is relatively rare, it is somewhat more common among CI users, particularly children, and all users are advised to be vaccinated against it. If you want to read more, the FDA article is here. Advanced Bionics, the maker of my implant, is being proactive: they are echoing the FDA's recommendation, and they are also taking the extra step of paying to make sure that all their clients are reimbursed for their vaccinations. I got my paperwork in the mail today...whatever my insurance won't cover, AB will pay. Now I have absolutely NO excuse for not doing it...except, perhaps, that making the phone call is tricky. I also need to run by the health department and make for sure I haven't already gotten it...I had to have the measles shot back in the spring for college, and they talked me into another shot, but I can't remember what it was (duh.....)....ANYHOW...if you're a CI user or parent, please investigate this if you haven't already.
My little countdown timer is getting closer and closer...Nov. 5th will be here before I know it! I'm getting excited, and also a little stressed, since I have a few things I want to do before it happens, and it actually looks like I might not have time to do them all. Oh, well...I'll do what I can do! :) Today I went to the store (we were out of everything, since I had been gone for a week) and loaded up the fridge. I spent the rest of the afternoon in the kitchen...I made a pot of chili for tonight's dinner, then made two batches of the Pioneer Woman's Chicken Spaghetti...one for this week, one for the freezer. I also made two pumpkin rolls, because my kids LOVE it, and this is really the only time of the year that I indulge them :). I'm making several more casseroles for my freezer this week...and looking for ideas for more. After my last surgery, I was dumbfounded and frustrated by how tired I felt and how dizzy I was. I am hoping for a somewhat better result this time, but if it's anything like it was then, I want to be better prepared this go-around. We had a lot of support from friends and women from church...they brought a lot of food the first few days...but I could barely stand the first two weeks, due to the vertigo and tiredness, and sure didn't feel like cooking. We ate out a lot...but I hate doing that...with five kids, it's a real budget-buster....so I'm trying to prepare our kitchen and freezer so that I can take a few weeks off, if necessary. And who knows...maybe this time it'll be different and I'll feel like a million bucks...that would be nice! :)
Tomorrow it's time to hit the girls' room. This week I'm working on getting their toys organized, weeded out, thrown away if necessary. Then I'll move all their furniture out, decide if that bedroom needs to be painted, then we'll start moving our stuff in there from downstairs...then the entire decluttering/sorting/cleaning/painting cycle will begin again for a couple more rooms. Should keep me busy right up until Nov. 5th! :)
Several of my CI readers know who Michael Chorost is...I read his book, Rebuilt, just before my activation back last October. Laurie sent me an e-mail today with some good news: Mike's second CI has been approved by Aetna and he will be having his surgery in December. Aetna covered Laurie's second implant last January, but has stubbornly balked at doing the same for everyone else. Laurie, along with many others, I'm sure, has invested some of her time to changing that, and, according to Michael's web page, on October 19th, Aetna officially changed their policy to cover bilateral implants in adults. I have a few friends who have policies with Aetna that will be glad to hear the news! :)
And thanks so much to Linda and Baba...Linda treated me to the Sweet Treat to Read award and my beloved Baba shared the BFF (Blog Friends Forever) award. I do want to share these, but can't do it tonight...it's 1 AM! I didn't want to let these ladies think I'd forgotten about them, though, or didn't appreciate them...you both are so sweet!! (((HUGS)))And one last treat...this picture makes me smile every time I see it (it's my desktop picture right now...Sandy's husband said that it would make a good Halloween picture!). It's already been posted, so no danger of me being shot over it...so here's me and my girls in Savannah. Daisy took it upon herself to be a one-woman deaf ministry last week...and she and I laughed our way through the week with some of our "interpretations" of things. I taught her one sign that my little girls taught me..."WOW". Daisy and I were "WOWED" by a lot of things during the week...but when I showed up with purple hair Thursday night (I couldn't let Melli outdo me with her red hair, understand?), we managed to get a group "WOW" shot! It never fails to crack me up!!!
Love y'all....

Monday, October 8, 2007

Today, I saw...

...a deaf baby girl. It struck me that I had never seen a baby that couldn't hear before. She looked to be about six months old, and was just adorable, with huge, cornflower-blue eyes. I went over to see her, and the mother started signing. I don't speak the language, so I just talked...as few words as possible, hoping that she'd understand. I told her the baby was beautiful, and she smiled...that wasn't news to that proud mama :). She volunteered that she and her husband were deaf, and that the baby was too. I told her I didn't sign, and asked if she wore a hearing aid. "No", she said. I asked if the baby wore one, and again, "No"...with a friendly, but firm, shake of the head, and a determined look on her face. I showed her my CI, and she looked politely and nodded, without comment. I spoke to the baby, who looked at me briefly and then looked away, unsmilingly, disinterestedly. I looked up at the mom again, and said, "It's nice to meet you...she's beautiful"...and walked away.
I can't say anything...as much as it can be argued that parents should be allowed to choose hearing for their deaf babies, I suppose I should concede that parents should also be allowed to choose a life of deafness for their babies. It has just been on my mind a lot today, though...that this little girl will grow up vastly different from the hearing, speaking world around her. While I'm sure she will find security and community in her deaf parents and the Deaf community, I can't help but wonder if it will be enough...I don't think that I would have been happy in such a limited world. I don't know enough about the Deaf community to be judgmental, and I don't claim to be a perfect parent, so I won't presume to tell other people how to parent their children. But today, that tiny little girl with the blue eyes is on my mind...because I know it doesn't have to be that way, and wonder if perhaps someday she or her parents will regret her quiet life. To every parent that has ever had to make that decision: you have my deepest respect. I know that this isn't a decision to be taken lightly...and I don't see how you do it.

Interesting day....(long)

After morning worship services today we went to Nashville for the League for the Deaf/Hard of Hearing picnic. There was a good turnout...I'm very comfortable saying there were probably 200 people there, and likely more. One thing that struck me right away is that I seemed to be in the minority: I don't sign. Fingers were flying all around me, and I had no clue what was being said. I was grateful to find my "twin", Shari (and her hubby and her mama and her mama's butterscotch Krispie squares...YUM!), and we found a few more from the HLAA group and kind of stuck together. It was kind of disconcerting to realize that as deaf as I am...no hearing at all when I take the processor off at night...I didn't quite fit in with that group. I seem to be stuck in that in-between world of "hard of hearing": too deaf to manage well in the hearing world, and too dependent on lip-reading and what little hearing I have to manage well in the Deaf world. There were sign interpreters all around...but they did me no good at all...and I was often too far away from whoever was speaking to be able to lipread and hear what was being said. Most of the people there were right at home signing...many of them didn't speak while they were signing, so, no lips to read. The Deaf have a culture all of their own...a comfortably quiet one, where sign language is the primary means of face-to-face communication. It's a beautiful language, but, like any other foreign language, it excludes those that don't know it from participating in the communication process. I felt safely at home with the few HLAA folks that showed up...many of them are in the same boat I'm in...knowing a few signs here and there, but speaking and listening as their primary means of communicating. However, I felt a little awed and even out of place in the larger group...I just wasn't one of them...what a strange feeling!
I did get to meet a couple of other CI users...there weren't many of us there, though. I talked to one of the audiologists that I met last year when I was researching CIs and told her that I had been approved for my second implant by BlueCross...we had a little discussion about that, and a little later I was able to share that information with one of her clients, who has one implant and is pursuing another one. I think that he and his wife were encouraged by that news and he is more excited about getting a second implant now.
I also got to meet a few people who hadn't ever really seen a CI processor before (I know that a lot of you haven't, either, and I only saw my first one last year). I had a great time taking it off and showing it off and explaining it. One fella expressed surprise that it was as small as it was...CI processors used to be big, bulky boxes that were strapped on or worn on the belt. Body-worn processors are still available (although now they're very small and discreet, looking like a pager or something), but more people elect to go with the behind-the-ear processors now, which just look like hearing aids. He went on to say, "I feel better about them now!" I understood completely. A few years ago, if you had asked me what I thought about cochlear implants, I would have told you that they were fine for other people, but not for me. I didn't know anyone that had one, and all I knew (or had heard) was that you had to strap on a huge boxy processor in order to hear...and I wanted no part of that. My first hearing aid was one that looked very similar to this: It was worn clipped to a pocket, or to a vest. I don't remember how long I wore it...I do remember liking the little behind-the ear hearing aid that I graduated to much better, because it wasn't as noticeable. For anyone who worries about someone being able to see their tiny in-the-ear hearing aids, imagine wearing one of these, and be incredibly proud that technology has made hearing aids so much smaller and better!
Anyhow, after wearing that, and also the Phonak FM system (which helped me hear AMAZINGLY well in the classroom, but was HUGE, and, yes, worn strapped to my front) I never wanted to wear anything but my little hearing aids again. Ever. So when the little hearing aid finally wasn't good enough to do the job anymore, imagine my relief when I found out that cochlear implant technology had improved...and downsized...to the point where I could wear a little behind-the-ear processor! My pride and vanity were so happy to hear that news! And now, I am enjoying spreading the news, because I think there are quite a few other people out there that are a little nervous about the unknown: What do they look like? How do they work? Would they work for me? Some are at the point where I was last year...the point where it's just about the last viable option for hearing...and are nervous about their futures. I LOVE sharing my story...and hope that for some people, at least, I can take some of that nervousness away and make it a more appealing option, rather than something scary and dreaded!!
We stayed at the picnic until about 5:30, then found a bathroom and washed the girls up (the little ones were filthy from playing in the dirt) and got everyone dressed for church. We visited a congregation in Brentwood, TN tonight and were surprised to see some people we knew! We got there just as services were starting so we sat in the back of this HUGE auditorium. They were having a singing service, thankfully...otherwise I wouldn't have known a thing that went on...from where we were sitting, if the speakers even HAD lips, I couldn't see 'em, let alone read 'em! ;)
From there we drove around Wendy's to pick up dinner for the girls and around Starbucks for a cup of coffee for me (I had too much at lunch today to be hungry!)...then we headed home. There was an incident with the laundry after I got home that rendered my fingers purple (it's ink, and it's good ink, too, so they'll be purple for a while...*sigh*...thankfully no laundry was injured in the inking).
The girls go back to school tomorrow, after a long weekend off...so I'm headed to bed...6:30 will be here before I know it!! Love y'all.....

Saturday, October 6, 2007

I have a date! :)

...an activation date, that is! It's kind of hard to get really, really excited about it just yet...especially since I haven't had my surgery yet. Right now that is my first priority...and once we get past that event I can concentrate on the activation. Anyhow...there IS a date...on Wednesday, December 12th, at 1 PM, I'll hear for the first time with my new ear! I can't imagine just yet what that will be like...since my first ear was so different from anything I ever thought it would be. I didn't really "hear" with that ear, but instead had a jarring sensation of vibrations inside my head....much like being at a concert when the music's playing so loud that you can't even hear it, just feel it pounding inside your chest and your head. I have faith that this time I will have some hearing, and am excited and curious and cautious and nervous! Maybe it's a good thing to have the date now...so I can be getting used to the idea :).
Surgery is one month from today...I can't wait! I'm so glad that I have a trip planned this month, and a lot to do next week. We are playing musical bedrooms at our house this month....moving our son downstairs and hubby and I are moving upstairs with the girls. This will require a lot of cleaning and some painting and physical work, so that will keep me busy and moving and my mind occupied!
I know I said I'd review the Josh Swiller book...and I will...honestly....it was an AWESOME read. I just want to read it again so I can write a thoughtful review...I read through it so fast that I know I'll leave a lot out if I write anything now. In the meantime: a trailer for a film that Josh's cousin Rebecca is making about his deafness and his CI journey. It's a really neat video (he uses the Cochlear brand implant...I have the Advanced Bionics implant, instead, and highly recommend it!)

More to come soon...I have a picnic in Nashville tomorrow for the Nashville League for the Deaf's 80th Anniversary homecoming...I can't wait to see my friends and make more new ones...hopefully, there will be pictures later! Have a great weekend! :)