Wednesday, April 22, 2009

March of Dimes Walk

A dear friend of mine is walking this Sunday for March of Dimes. She has an incredibly modest goal of $300 to reach in the next four days.

I met Melissa, very begrudgingly, when my principal asked me to take a deaf education student teacher from a local university for the spring semester several years ago. I asked if I had any say in the matter and he said no, so the rest is history. Thank God for Dr. Michel. I made one of the best friends a girl could ever have!

Melissa and I have shared so many ups and downs through the years... our scales (she'll forgive me for that one if one of you makes a small donation)... our dating lives.... our engagements.... our weddings... and our pregnancies.

Most of our life experiences we shared around the same time periods which made for a great support system in each other. However, Melissa became pregnant just before my son was born, and it seemed like her son was here in no time after I had Aidan. Gregory, very unexpectedly, made his appearance 8 weeks early. He was a preemie, and no one saw it coming. His family was very anxious. He was in NICU on Christmas Day (and Melissa couldn't even touch him), and in the hospital for several weeks following. He was also in isolation at home for several months once he finally came home. Today he is a very happy thriving little toddler who is into everything. Pure joy is the best way to describe him.

There are the angel babies that are no longer with us that this walk also represents. Rudy is the son of my friend, Dannette, (a former Miss Deaf Texas and a current bi-bi pre-K teacher) who went to heaven after only 28 days on this earth. He was a fighter but he was too early. Dannette has just been blessed with the happy news that she is expecting three years later, and she is due on Rudy's original due date, December 21st. (I had goosebumps when she told me that.)

My friend, Kara, is someone I've reconnected to from high school, and I've actually gotten to know her better now than I ever knew her then. Her beautiful daughter, Bailey, was born stillborn 5 years ago at 39 weeks.

March of Dimes can make a difference in someone's life that you know. A small donation goes a long way. If you can make even a $5 donation, I'm sure Melissa would be thrilled. It's the little things in life that make her happy. She has no idea I'm writing this, so I hope she forgives me for not telling her first. xoxo

Thank you in advance to anyone who has even taken the time to read this, and a big heartfelt thank you to anyone that might consider making a donation to help Melissa reach her goal in the next four days. Remember it is tax deductible!

Friday, April 17, 2009

Drip Drip!

It was a dark and rainy night. No scratch that.... It was a dark and rainy afternoon. The kind where an almost two year old valiantly fought an afternoon nap in the next room, passing prison time slowly pulling out each individual sheet of the big jumbo pack of new wipes accidentally left in his crib (when he realized that all other antics for freedom had failed.) The cats curled up under the desk snoozing away, while I escaped the morning madness that is Mickey Mouse and choo choo trains by spending some time online. When lo and behold, what noise was that yonder invading my right ear space? No, it wasn't the rat-a-tat-tat-tat of the computer keys that I'm getting used to lately. This was different. This is *peering out window to confirm*... yes, this is the sound of raindrops on the roof. Holy cow. Awesome! This is a sound I can say with absolute certainty, I can only hear in the bionic ear when I'm inside the house.

Well, crazy times like this call for venturing to the back door and standing by the rain to listen...(I'm not feeling it enough to actually stand in it and spin around, holding daisies, while my hair is drenched cover girl style from the rain.) I can easily hear it with both ears, but it is such a different sound with each one one. With the hearing aid it has more of a calming roar. With the implant, it sounded more like a pattern with a constant drip drip sound. I think I need to go back to the door and take more notes.

Also that child in the next room had an early release and needs some monitoring (and NOT for good behavior... the warden just couldn't take it anymore!)

Thursday, April 16, 2009

I've Got Ears, Say Cheers!

I'm just past two weeks since the first mapping, and slowly but surely, things are starting to look up! Last night James and I took Aidan to see Disney on Ice at Reliant Stadium in Houston. Aidan loves Mickey Mouse and all of his friends, so we knew that would be so much fun to watch the magic for the first time through his eyes. Meanwhile the show was very loud on my new "ear", but the noise didn't bother me any more than it normally would have in the pre-CI days. I had the setting on the next to loudest program (P3), but I thought it was at the highest at the time(P4), which is where I normally wear it during the day now.

I couldn't help but think how, even though the show is very visual, there is also a story being told and music playing that would require hearing to appreciate. Younger children with hearing loss will miss out on some of the excitement because of that unless Disney makes some accommodations I don't know about? I did wish I could follow along a little better last night, but I was so taken in by Aidan's pure joy with all things Disney, it was quickly forgotten.

Aidan loved the show and was spellbound with skating fish and lobster, the vibrant lighting and sound effects, and especially the Mickey and co. sightings between the acts. He was so calm and well behaved all the way through intermission. (Wow, have I ever said Aidan, calm, and well-behaved all in the same sentence before?) He sat on his dad's lap for a while and then reached out and asked for me. Awww... coming from his royal wildness, that was a special treat, and I enjoyed every last snuggly minute!

We let him burn some energy during intermission, and meanwhile, I loaded up on cokes, popcorn and cotton candy that came with the absolute must have item of the night, a yellow fish hat. (Mind you, we'd already had a cheeseburger, fries and a snowball in a fish mug.) The second half of the show started feeling a bit long for an almost two year old that was stuffing fistfuls of cotton candy in his mouth as fast as he could pull it out of the bag. He became somewhat restless and antsy, and I could finally show James, with absolutely no doubt, that late night sugar for our kiddo will create a monster. Of course I bought said sugar that created said monster, but did I mention we saw Mickey Mouse live and in person???

On the way home James had to make a quick stop to pick up his truck at work, so I waited in the car for a few minutes. Aidan was out for the count in his car seat. I decided to listen to a CD with my processor minus my hearing aid. The CD is one of Faith Hill's older CDs that I had years ago. I just bought it at Half Priced Books since I had several songs memorized I could use for listening practice. I was surprised to listen to Breathe and actually separate her voice from the music. It wasn't crystal clear, but it was something new. I could easily follow along with the song knowing it so well, but I couldn't have done that with my processor alone two weeks ago.

When we drove home, I continued to listen to the CD. This time I had the car engine running and my hearing aid on in my left ear. All the same, I noticed something big, something different I hadn't connected with before that moment. The "noise" in my right ear had become the high frequencies of the song I was listening to and it sounded like a (hold it....are you ready for this... wait...just wait...) PLEASANT (yes, I said pleasant!!!) tinkling of music that matched what I was hearing in my left ear. The two sounds were like matching bubble gum pink to fuchsia, definitely in the same family but oh so different. I can't hear what I'm hearing in my right ear with the implant on the left side with my hearing aid, but at the same time my implant has a long way to go before it catches up to what I can do with a hearing aid. (Why do I feel like I need to explain this, like I'm having an affair with my right ear and cheating on my left ear?)

Since last night I've heard music on the television in passing with the high frequency tinkling in my right ear that matched what I was hearing on the left side in the lower frequencies. Muy cool! Also, I've noticed almost overnight that speech on television is becoming more clear to me. Aidan and I watched Babe this afternoon, and I took off my hearing aid to listen for a few minutes. Words sounded like they were echoing, yet with the captions on I could easily match what I was reading to what I was hearing.... easily. Whew. Slowly but surely. This is definitely better than I had hoped for even a week ago at this point. I'm looking forward to my next mapping!

Sunday, April 12, 2009

A Little Lost on Easter Sunday

Today, my husband, son, and I went to Easter service at Houston Second Baptist in Katy. I was so excited about getting everyone dressed up, out the door, dropped off (although I felt so bad that Aidan boo-hooed buckets as we left him in the nursery) and to the service on time. What I was not expecting to find is that the service is no longer interpreted in sign language. The Spanish interpretation is still there, but where did the deaf crowd go? I admit that I teared up when I asked where the interpreters were and was told by a very nice man, who looked so disappointed to be the one to tell me, that sign language interpreting wasn't available for that service anymore. What the heck? I kind of felt like, in the moment, I was being tested to see if I could take the news on such a wonderful Holy day like a champ. Of course that made it worse because I was quickly wiping the tears as we sat down. Debby Downer arrives to the pews in a timely manner. *sigh*

I was really bummed at first, but then I thought maybe I could use the time to practice my listening skills. I knew I wouldn't understand much but every little bit of practice helps. Really, all there was to do was to make lemonade out of lemons at this point. James was obviously feeling bad for me, and I felt bad that he felt bad. I am too much of a novice with my implant to say I got a lot out of the service, but the songs from today were ones I've known for years. I miss my grandmother, especially at Easter, and the hymns were comforting and familiar and made me feel nostalgic for another time.

Before the service started after the singing, the room went dark, and there were loud booms, which were special effects that sounded like thunder (I'm pretty sure that is what it was supposed to be) and a narrative that unfolded around the story of Jesus' resurrection. Also, the main points were displayed in writing on the screens. It was very much like briefly being in a theater for an action movie with the compelling voice narrating (all I can tell you is that it was a deep male voice, but I would've known that with just my hearing aid) and loud theatrical sound effects.

The service was too complicated for me to follow. I could only catch a few words or phrases here and there as Dr. Young worked the stage. This was his televised sermon, and the cameras surround the stage, so he can pretty much move all over the stage, and he did. We sat behind the orchestra and had an up close view of all the frenzied, exciting action that goes on in the pit. There are also a lot of overhead television screens at Second Baptist that show the service as it is taking place and also includes the verses being read or the songs being sang which is really cool for someone that needs a little visual information.

After the service we made our way back to the nursery. Aidan was in a class solely for May 2007 babies. You know it's a big church when his class is only for 23 month old kiddos! I wonder if they celebrate all the birthdays in May? Aidan had some artwork for us, which included a butterfly and a cross he'd "colored" for us. I was already mentally deciding where on the fridge I was going to place them and what was going to have to go to make room for them. He was very happy to see us, and of course we were thrilled to see him. Have I mentioned how much I love my little angel with his lopsided halo?

We went out to eat at Red Lobster after church. At this point Aidan was tired (read: hyperactive, kicking, just a real pleasure. ;-) We knew it was a lost cause when the crackers were tossed all over the floor and table, and he was upset he was not allowed to "play" (throw, toss, hail Mary) with the (breakable) bread plates. James was still a little uncomfortable from the family picture a waitress took for us because Aidan chose that moment to kick his dad in the unmentionables as I held him. I must say as horrible as I felt for James, the picture itself is classic, a lovely blooper caught on camera to remember for years to come. Yes, I must figure out how to post the picture, which includes James' stunned "I've been maimed" expression, while Aidan completely turned his head away from the camera. We called it a day and took our lunches to go.

Maybe next year Aidan will make it through church and lunch. Last year his grandfather preached his last Easter service before retiring, and I had to take chatty Aidan outside for the service (small church and no nursery) but we made it through dinner at Luby's with the family afterwards. As for this year, we all went home, watched a little Micky Mouse, had lunch and took naps. Actually, I waited until James and Aidan were both asleep to break out my crab legs and shrimp while watching a DVRed episode of General Hospital from last week....THEN I took a nap... not too shabby! When all was said and done, I think I preferred my couch for lunch today.

Anyway, I really do hope we can find a Baptist or non-denominational church in Houston that we really like as a family (and is not such a long drive) and has interpreted services. There's a deaf church in Houston, but it's about thirty minutes or more from our house. I'd like to find something closer to our community so we can be more involved than just for a Sunday visit. I also hope God will forgive me for my gloomy mood earlier today because my life has been extremely blessed, even when things don't go as planned once in a while. Today is really about the ultimate gift God gave us. Everything else is secondary.

Hope you all had most fabulous Easter! :)

Friday, April 10, 2009

Super Crazy Day with Some Super Fabulous Surprises Along the Way

Yesterday was an amazingly eventful day from start to finish. First thing in the morning, Aidan and I were off to see his ENT doctor at Texas Children's Hospital for another ear infection in this crazy cycle of chronic infections. He doesn't get inner ear infections. He gets them in the outer ear. He's prone to infections from mere contact with soap and water (and probably has a lot to do with his tiny ear canals.... so hopefully he'll outgrow this soon.) Aidan wears some super funky blue and green striped ear molds every night when he takes a bath to prevent the infections from returning. *sigh*

So back we went back to Texas Children's Hospital to get this darned infection under control again, and Aidan had a wonderful time in the lobby with all the fish in aquariums (both the fake fish in the tall plastic tubes with bubbles that float up and down, as well as the more elaborate and bigger aquarium with all the real colorful fish.) He likes to run around pointing to said fish, the fakers and the real deal, and repeatedly announce "Fish, Fish, Fish!!" to anyone, child or adult, that will look or listen. He's extremely loud and animated, so any of the hard of hearing or deaf kids hanging out nearby in the lobby probably got the gist of his simple but passionate message.

Unfortunately, someone will always come out eventually to claim Aidan, and then the meltdown starts. As soon as we go through the doors to the first room where he is weighed and checked in by a nurse, he loses it. The ENT visits in the past have been very traumatic for him with all the poking and prodding, to the point that a haircut or a visit to my doctor (yes, for me) can trigger the mother of all psychotic meltdowns. A little off topic here, but when do I ever have just one topic anyway??? He weighs 33 pounds now. I know he's pushing 3 feet tall, if he's not there already. We'll have his 2 year visit in the next few weeks (another meltdown in the making) and will get his new stats then. Someone actually asked me if he was 3 or 4 yesterday!

Finally, we headed to the next room to wait for the doctor and oy... I don't think a deaf person on that floor could have missed the vibrations of his sobbing and wailing when he saw THAT room. Poor baby (and mommy... I have to say it... :) There was a carnival type mirror in there for the pint-sized, and I made a picture of him standing in front of it looking at himself crying. I should be ashamed for saying this, but it is truly a hilarious picture of his over sized head on his tiny body thanks to the distortion of the mirror with his squished up face and tears. After I had my fun, we found a few books laying around and read stories calmly until the nurse and doctor came in and had to clean out his ears. I was his human swaddle...what a workout, but it sure beat wrapping him up and laying him down on a table when I couldn't do anything for him. It was over pretty quickly, and Aidan was overjoyed to tell the doctor "bye bye" (which is Aidan speak for "now get away from me already, lady. I am outta this joint.") Of course she found him cute and cooed back at the sweet child telling him bye bye too. We left with 4 prescriptions of ear drops, so I think I can get him through any more flare-ups in the future until, hopefully, they are all behind us. Thank goodness.

After that, we headed for a really busy Chick-Fil-A where I knew for certain a little someone would be over the moon when he saw the play area. After we had lunch, we wandered back there, and it was one of those sky high play centers with mazes and tunnels and what-not. However, it was not very wide on the ground with options low to earth for the tiny tot crowd.

Aidan struggles to keep up with the big kids when we are out at these play areas. He loves their energy, and frankly most of the kiddos his age tend to get run over by his exuberance if he's not watched carefully. On the other hand, older boys make me nervous around him when they get too wild, but I love the older girls. They just love doting on him and helping him climb and play. Aidan thinks every kid is his new best friend, and that just warms those little girls' hearts wherever we go.

Aidan enjoyed making do with climbing the bottom of the slide, and working his way through the little maze that goes straight up to the big stuff, but he didn't go high at all...nothing crazy and mostly age appropriate play. I finally told Aidan we had to go and the next thing I know he scampered up to the top of that sucker.... I mean non-stop climbing... go, go, go.... Whoa. Not cool, kiddo.... After all this time, now he decides to be Spidey Jr. and take off like a big boy running from his mama who is more than ready to leave. Why did he have to choose then to be so "normal"? So, so not cool... especially when I had to climb to the top of Space Mountain (seriously this sucker was so freaking tall) wiggling like an inch worm in small confined spaces back and forth just to get up to the top. I actually asked some lady I didn't know to watch my purse so I could tag after him because he was completely out of my sight and not coming out. I've have only had to chase him once before, but this really called for an intervention.

Once I got to the top and was swarmed by pint-sized pipsqueaks maneuvering around me, I still couldn't quite get to Aidan who was gleefully skipping off to other parts. (Nothing like seeing mama to give him an even extra dose of confidence up there, which was so not my plan.) I finally asked an older girl, who'd been pointing out which tunnel he was playing in so I could try to keep up with him from the ground, if she'd go down the big crazy slide with him. She obliged and I wiggled down the bottom again feeling like a big over sized dork. As soon as he came through that slide with a big grin plastered on his face, I nabbed him. Of course there was a little drama that ensued, but we did finally escape with minimal tears. What a relief!

After our Chick-Fil-A outing, I had an appointment at the audiologist's office to discuss all the problems I was having last week. I was soooooooooo blessed to get someone new that I absolutely hit it off with, and even more fortunate that my friend, Shelly (God bless her!!) showed up to entertain Aidan while I was back there. I had a great interpreter, Randy, who had never been to a mapping before so he was fascinated as well. Michelle, my new audiologist (and yes, she is taking over my case!!!) and I did a lot of in depth talking. I asked for a kick in the bass... (*giggling*... it's okay, doesn't rhyme, people!) I left with 4 new mapping programs based on what *I* wanted. Also, at one point before we started, she asked me if I'd like to meet someone there that was MUCH like me hearing-wise as well as her background with hearing loss (from childhood) and was there for her for her first mapping of her second implant. I was a little ho-hum... yeah, sure... bring her back but thinking I'd talked to so many people online and through their blogs that I didn't expect much new info.

Randy and I were sitting there waiting and just talking when the door opened. In came my hearing loss twin, and oh. my. gosh. Michelle introduced Angela, while I took a quick look at her face and instantly made the connection. I was so excited when I saw her that I started squealing, "ANGELA EARHART????????" Well, I caught her off guard and everyone else there. I jumped up and grabbed her hands saying, "Do you remember me??? (Angela=stunned, dazed and confused) Miss Deaf Iowa, top ten!!!! You were a chef for you talent!!! (part of her act, it was actually a kind of skit) Miss Deaf Tennessee *pointing to self who was NOT top ten* Miss Deaf America Pageant!!" Let the party begin. I had not seen her in 15 years, and she was, for those two weeks, one of my nearest and dearest friends during that insanely busy and stressful whirlwind adventure.

Angela is a celebrity around these parts. She was on this reality medical show based in Houston a few years called Houston Medical that was shown nationally (I think that is the correct name... need to google this...) Not only is Angela deaf, people, but she is an honest to God doctor. I taped her show for my high school students who used to whine about being deaf limiting them to like... oh......everything????

I, of course, bombarded her with giddiness while chattering away and then we compared notes on our experiences. She's been activated with number one for about 8 months, and it has been so much work for her. She's still getting there, and she still has an interpreter with her 24/7 at the hospital where she works. She will be soon be practicing at Methodist Hospital in Houston. She's such a fascinating, down to earth person.

Her husband is just fabulous. He is from Romania and spoke perfect English even though it is not his first language.... and .... get this... SIGNED!!!!!!!!!! My husband is so meeting this guy one day. Angela (and her husband) gave a great little pep talk and also a reality talk on what it's really like to have grown up deaf, oral, with hearing aids in regards to this fairly new experience with cochlear implants. Her husband gave some great tips on how my husband can help by identifying sounds I might hear in public and making me aware of them so I'll start to recognize them.

Angela is still learning, but she did say she is getting much better with speech, but still has a ways to go. The first two to three months were the hardest for her, but she got to a point where the CI was working well enough that the hearing aid in her other ear started sounding lousy. Interesting. Angela eventually had to leave and go see the surgeon (same one I have), and I had to get back to the business of mapping, but it was just too cool seeing her.

Before Angela had left for her doctor's appointment at another building, a staff member who'd heard our 1994 Miss Deaf America Pageant connection (I'm sure I was fairly loud) ran back to the room with a camera and snapped our picture. I couldn't have looked more "stay at home mom-ish thrown together in ten minutes", but I placed Angela's skinny butt slightly in front of me so I could hide a tiny bit and slapped on a smile (and prayed this picture doesn't show up on any newsletter! Darn it, where's a shiny tiara when you need one?! Nothing hides a few pounds like a tiara does... especially a shiny one...) Shelly and I did run into Angela and her husband one more time downstairs as we were all going our separate ways. She said that her new CI is just like starting over with the first one again. I guess it is just how we are hardwired? So much for the brain giving her a break after all this time listening with the other implant, but hopefully that one will catch up to the other quickly for her. I can't wait to hear more from her.

Back to the mapping, Michelle listened to me and played with the bass. I got a nice boost, but it sounded like just low tones in my head, not actual real life sounds. She did say my lowest mapping at P1 she programed, if it went any lower I wouldn't be hearing anything (but I'd still be getting stimulation on the auditory nerve if we did that though and it would be far better to wear it at P1 than not at all), so I didn't go any lower. She also slowed the rate down that I was hearing... and I have no idea what that means, but things weren't quite as hectic in my head. She told me that I might not hear the burner at home but to check it out. (Yes, I tried it out immediately after arriving home, several times, and still hear it.)

After a nice little visit where nothing seemed to change too much sound-wise except to be more tolerable and a little lower, my exhausted child and I headed to a party store to find Mickey Mouse invitations for his Chuck E. Cheese birthday celebration next month. I hope he doesn't suffer from mouse confusion, but at his age Chuck E. and Mickey probably look like long lost cousins, and he has more than enough love for them both. Of course he wouldn't leave the party store willingly without a balloon, and I was happy to find the Blue Clues mylar balloon on clearance for $1. Latex balloons are a big cause of choking in young children, and it terrifies me every time someone offers him one. He's just obsessed with balloons. I'm debating on whether an enormous Micky balloon tossed in with his Chuck E. Cheese balloons would look goofy, but he'll be two. It's Chuck E. Cheese. I'm pretty sure anything goes.

We went to the bakery to order his Mickey cake and then also walked over to Half Priced Books a few stores down. Whew. Why do I think that child can handle such excitement? I couldn't look at anything without a whole new shelf of books threatening to fall at his fingertips. I picked up one book after another he yanked out and finally settled on Duck For President (we have two books from this collection, and they make ME laugh every time I read them) and a small slew of Thomas books. I just couldn't concentrate beyond that as Aidan was into EVERYTHING.... He was also coughing and sniffling and draining from a cold that was getting worse by the hour.... We paid for our purchases and got out of there before I lost my mind further.

Walking to our car I saw my trunk was open for business. What the heck? I'm really losing it, and that wasn't the first time I've walked up to my car to find the trunk opened from accidentally hitting the trunk button on my remote. It would be nice if I could HEAR it pop open. My husband had work supplies stored back there, but I guess they didn't look too appealing as they were all intact. I walked back to put the trunk down, and right as it was shutting, I saw it. In slow motion but yet just a split second in time, my child's hand wandered to the open area of the car just as the trunk was flying down, and like the bionic woman (in super slow yet lightening fast motion), mama came to the rescue with her thumb, as the rest of the hand had no time to jump in and ouch. ouch. ouch. Holy Toledo. I grabbed Aidan who was tearing up but his hand was fine (thank you, Jesus, and thank you, thumb!) and then a second peek at my thumb that appeared to be slowly doubling in size and growing blue. Yes, I cried. Man, ouch! This mom business is dangerous stuff some days, and to think there is no combat pay. Just a side note to explain what a hero I am not.... I originally broke that thumb at 13 weeks pregnant playing co-ed softball with James. It ended my softball career with a trip to the ER and having to sit there and stupidly tell these people..."yes, I'm pregnant... yes, I was playing ball... now please don't hurt my child with x-rays." *eyeroll* In the grand scheme of things, what's a little thumb for your child's well-being? At least in that one moment I felt like I had used it for a better purpose than I had 2.5 years ago. *sheepish grin*

Later that evening Aidan and I went with James to run some work-related errands and to pick up fast food at Sonic as I was too drained to whip up anything in the kitchen. We were all wiped out from our mutual long days by the time we got home. However, I realized I had worked my way up to map #3 in ONE day. On a whim, I flipped on the last program to P4 and pulled out the left HA for the heck of it, and IT. HAPPENED. Yes! My husband sounded like a kidnapped Donald Duck stuck in a bag on the side of the road, but I heard HIM. I heard words!!!! Real actual conversation and not just beep-beep-beepity-beep. I really truly honestly heard the guy! I did a really silly dance, and my son was right behind me getting jiggy and turning in circles. So there ya have it... A little kick in the bass can go a long way, and I guess I had to learn to tolerate the lower programs in order to get to a point that the mappings could get to the speech range. James sounded absolutely horrible and muffled, hollow, BUT it was really the most beautiful sound I've heard since that child of mine started wailing in the operating room nearly two years ago after that really long silence (and probably his last silence at that.)

Earlier that afternoon, my audiologist said her goal for me when I came back in a few weeks was to get to P4, and I was working it a few hours later... What an ego boost for me, and I really needed it. I am really determined to work at this now. All I needed was something a little more than the clicking on the gas stove to get me out of my funk and into my groove. I'm really glad that day worked out the way it did from getting moral support and babysitting from one of my closest friends and moral support from a very unexpected, old friend, as well as a great new audiologist that listens to me and walks me through everything she's doing, while humoring all my questions and suggestions. What a super fabulous day!!

Wednesday, April 8, 2009

I HEARD THAT!!!!!!!!!!!!

Finally, I heard something with my implanted ear that I've never heard with my hearing aid. I just heard the clicking noise the stove makes when turning the gas on. I'm really excited and don't care that I ended my last sentence with a preposition. My husband always tells me the stove is clicking because I forget to move the knob from "light" to "low". It made a very distinct "click, click, click" sound that I keep turning the knob to hear.

On the way home from Wal-mart tonight I heard my blinker. However, I didn't realize it, but I can hear it with my hearing aid if I'm stopped. Hearing it while I was driving was really cool. Oh, and my son coughed in the back seat. It was also very distinct and clear as if he were sitting next to me on the couch. The blinker and the coughing were easily heard by the HA and CI working in tandem, which is really the goal. Hearing the stove with just the implanted ear though??? Too awesome.

Baby steps, baby steps... :)

Watching AMERICAN IDOL with a Cochlear Implant - Take 2

This last week has been pretty rough in terms of listening out of my right ear (and the word "listening" is used loosely.) My ear has been taken over by bells that only Edgar Allen Poe might have done justice describing. If I didn't have a fellow blogger in cyber space doing similar and only a week and half ahead of me in activation, I might be feeling a little more isolated right now. (Hi Kelly! :-) I know I'm not alone though, and my experience might be one of the slower success stories to be. I have no doubt I'll be a success story, I just didn't expect how much work and time would be involved before I got somewhere more productive, but like Teddy Roosevelt once said, "Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty. I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well."

From my casual observations so far, it seems like life long hearing aid users with severe to profound hearing loss having cochlear implant surgery as adult don't come out of early activation with the more exciting, quicker results of those deafened later in life. I haven't heard Donald Duck talking to me, distinguished the blinker in my car ticking away, and I've definitely not heard birds singing YET.

I'm wondering if most new adult cochlear implant users, in general, tend to be the later deafened and if that is why there seems to be much speedier rates of success when reading blogs in the CI community? I could be wrong, but it seems like most people choosing to have the surgery as an adult are not the ones that grew up with a severe-profound hearing loss using hearing aids and even more rare are the adults that not only lip read but use sign language as a mode of communication. Any thoughts on this? Please note, I did say MOST, as I'd be an exception to this myself as would Kelly, since we've both being hearing impaired forever and a day (and her blog is listed on the right side of this page and titled "Life is about Creating Yourself" and definitely worth checking out.) Also, I am in no way saying that those later deafened just breeze through the process. I think it's just one of those things where past experiences greatly affect early and overall success. I also think this is where some complaints come in that there's so much "hype" about initial success, when probably it's not so much hype as it is the actual experiences of a certain demographic and their triumphs with the implant.

Last night, I tuned in for my usual Tuesday night dose of American Idol. I actually enjoyed it more than any time since I had surgery. It's a little difficult to explain, but one quick way to sum it up is, I would have preferred to have my cochlear implant ON than off during last night's episode. There is no miracle on a grand scale to report, but on the small scale, I think God is helping me figure things out a little at a time and maybe granting me a bit more patience through this process.

So, what was different? For starters it was probably in my favor that they were singing songs from their birth years with the oldest (Danny) born in 1980 and the youngest (Allison) born in 1992, and those songs were definitely "old school" for me. On a side note, I can't believe I'm old enough now that years of my youth are considered recycled pop culture..... but moving on as I'd rather not dwell on that thought too long... happy thoughts...happy thoughts...... With only one hearing aid on post surgery, I've been pretty lost listening to the show on Tuesday nights, but I've kept trying regardless because I just love that ridiculous show. Last week was exhausting and annoying with the ringing in my right ear (and it just happened to be activation day #1.... oh... wait... so last night was the culmination of week one and I finally found something nice to say about it? Cool!)

Last night, I noticed that I wasn't feeling impatient or annoyed (unless it was directed at Simon's biased commentary.) The singing voices seemed to be richer and have more clarity. I was confused. What was different? I pulled the magnet off my head and numerous times, and the world would become a little too silent with only one hearing aid doing all the work. I'd pop it back on and the ringing would be back, that annoying ringing, but the volume and clarity of the song would increase just a little somehow, some way. I'd turn off my hearing aid and let the CI go solo, but my right ear (CI) just mocked my left ear (HA) for thinking such crazy thoughts. The ringing has become easier to tune out, even though I know that's me hearing things I don't have a clue how to sort yet, but together with my HA, the implant, seems to be providing the role of supporting actor... (a very small role, but we're getting somewhere nonetheless.)

I think I'm going to play the show back on DVR today and see if I still feel the same about the clarity I felt last night. Just a little disclaimer though, I did use the captions and having heard most of those songs for years also helped. Then again, AI isn't known for showcasing anything remotely modern in song choices most of the time, and I usually do know several of the songs being sung on any given week. In fact, if I don't know something, it seems like that is when Simon will call someone indulgent. Go figure. It's such a pet peeve of mine.... if the kids sing something different on the show, it's indulgent, but Simon doesn't hesitate to complain how karaoke his non-chosen ones sound singing the same old, same old done to death songs... Maybe another show I'll write a post venting about even more hypocrisies on the show, like how Kris was told to be more like the original and the next song Lil was told she was too much like the original. I'm still reeling from whiplash, but it's a frequent side effect of too much American Idol anyway.

I am curious if any other deaf/hard of hearing CI or hearing aid users watch the show, and your thoughts. Anybody else get ticked off when the word "deaf" gets thrown around a little too lightly on the show or the message boards to make a dig at the singers, judges or other audience members who disagree on what they heard? I think the new judge was the last one to use it on the show, and my husband looked at me quickly only to see me baring fangs and snarling. I ceased before I got foamy and slobbery though.

Feel free to add your two cents about the advantages/disadvantages of being implanted after being late deafened or as a life-long card carrying member of the deaf and hard of hearing world.... and PLEASE feel free to snark or praise anything remotely related to your American Idol viewing and especially, "hearing" experience.

Monday, April 6, 2009

My baby is sick! :-(

The poor little guy.... Aidan's temperature was 101.5 tonight. He's been rubbing both of his ears all day, and we've been battling chronic ear infections for months now. We thought they had cleared up, but now it seems they are back with a temperature. I'm so frustrated for him.

Aidan has been going to Texas Children's Hospital to see a specialist since last year off and on for frequent infections. We have tried numerous ear drops, but almost every time we've gone back for a follow up, he still has an infection. What really stinks about those visits is they usually swaddle him and hold him down so they can look in his ear, and he will cry and scream like a banshee. Bless his heart... I swear I'm a hot mess myself not being able to do anything for him except talk to him quietly, while he stares in my eyes crying furiously unable to move. He has gotten to the point that seeing any doctor (or having his hair cut even) is a complete drama because he's still terrorized by the swaddling and poking and prodding he's been through. The last time we went in February to see his ENT, he was given the all clear finally. He has some funky colored blue and and green prescription ear molds he wears in the bathtub every night too help keep the infections at bay since his infections seem to be at least partly related to water and soap in the ear. He will bring them to me every night to put in his ears with no issues, but tonight he said "ow" when I first tried to put them in his ears. I'll have to call tomorrow and see if we can get squeezed in this week.

We've been blessed with a child with near bionic hearing... He hears EVERYTHING! I think of him as my hearing ear child because he has a way of letting me know what's going on around us. It's impossible to sneak off from him because he can hear the slightest turn of a doorknob (and oh the drama and tears if anyone leaves the house without him!!!) I can't believe my husband, who has classic selective listening skills like most men I know, *ahem*, and I, deaf as a doorknob, were blessed with a child so healthy that could hear just about anything. I especially love it when we are in the house, and he can hear a train whistle over a mile away or in the evenings when he lets me know his daddy is home, sometimes before James is even in the door.

I just don't want to risk Aidan losing any hearing from these repeated infections, and I know that now he has a fever I'm going to be calling first thing tomorrow and begging for a check up a.s.a.p. I was three years old before my hearing loss was detected. My mother had rubella when she was pregnant with me, but I am inclined to think that the high fevers I had after being sick with multiple childhood illnesses caused most of my hearing loss due to my age at detection and the fact I'd started acquiring language prior to detection. So, I'm inclined to be extra cautious and paranoid about any fevers Aidan has at this age, especially when he's rubbing and pulling on his ears.

On a side note.... the ringing lives on in my implanted ear five days after activation, although I'm learning to co-exist with it. I made an appointment for Thursday this week for a follow up with a different audiologist to see if some adjustment can be made for my sanity. My brain is completely lost, dazed and confused without a clue what to do. If nothing else, I might be able to turn the volume down on program one, but I'd really like to get a boost in the bass sounds. I'm not sure if that's something I can request since I tried to ask my regular audiologist for that last week, and she didn't really respond to it beyond saying she'd already mapped me by what I "told" her when she tested me. *blowing raspberries*

Saturday, April 4, 2009

Activation: Part Two.... the drama continues...

Well, I feel like a drama queen with all my "woe unto me" tales of the first two days of mapping and beyond. Nonetheless I'll carry on with the story for anyone interested in hearing me moan about it even more.

Why does it make me feel so tired to just think about activation and having the implant on? I have to turn it off to write, and right now the right side of my world is heavily silent but much relieved at the same time for the break. Silence has never been so still as it is after a busy day with the .... hmmmm... what's a new way to describe today's listening pleasure??? Okay.. so silence has never been so still as it is now after a busy day wearing the device that sounds like a squealing microphone with feedback in a huge cafeteria bouncing off the tiles and walls (the kind where baffled students pause everywhere to grab their heads flinching at the inflicted agony upon their ears.... Seriously, can you tell I used to teach?)

I'm four days (and a few hours) past the initial activation, and I've finally decided to leave my map for most of today at P1 (the quietest level, which is actually an oxymoron to call it quiet at all.) If I accidentally hit anything higher than P2, it's very much like that painful squealing microphone so I'm not pushing it. As it is, I'm adjusting to the high pitch squealing a little in that I can finally ignore it somewhat, but I'm not really picking up anything specific sound related that doesn't sound like bell or whistle ringing. If I read James' lips it seems like I'm getting a little something in there with the din of the ringing, BUT my brain has a way of hearing when it's really not if I am at close range to speech read, so I just don't know.

Anyway, stepping back to the night of initial activation, I finally took my CI off for the day around the time I went to bed. My brain was highly overstimulated. When I tried to sleep the strangest thing happened. I'd start drifting off and I'd have vivid dreams that would jar me awake before I was even fully asleep. Every time I started and was stunned to find that I wasn't really somewhere else and was actually in my bed. The room would spin a bit (motion sick feeling) and I'd slowly go back to sleep only to jump up again with the feeling I was somewhere else in the world. The splicing dreams were like a kaleidoscope of images and places and conversations swirling in my head making me extremely anxious. I finally told James I thought I was flipping out. He patted me on the back and reassured me, but I just couldn't stop tossing and turning and shut my mind off. As tired as I was from wearing the processor all day, my mind was working overtime from the shock to my system. I got out of bed, went to the computer and wrote my CI email group. They've all been supportive and just getting up and telling them I was going batty was therapeutic, and I was finally able to get some sleep after sending the email. I told them I felt like I was being taking over by a symbiote that lives in towers with ringing church bells of the thundering variety. (I'd just watched Spiderman 3, so don't be impressed with the word "symbiote" being used in my blog, if you even were impressed... :) If they thought I was loony tunes they haven't let on, and I've gotten so many responses from them with advice and encouragement in the last few days. They are a great group of people, and I really appreciate that they have and continue to humor me.

The next morning James had arranged for Aidan to spend the day at a daycare near us that he'd gone to a few times before when James was in the hospital. When Aidan came in to tell me goodbye, I was sans glasses, hearing aid, and CI... 100% Helen Keller mode. I told him I loved him, and the little stinker told me for the first time ever that he loved me and gave me a big sloppy kiss. I had not a clue what he said. James told me. Of course he hasn't said it again at any time that I've been plugged in and in tune with the world, but I cherished the moment regardless and felt extra bad sending him away for the day.

Aidan is not a fan of going to daycare whatsoever. To make matters worse, the daycare is next to one of Aidan's favorite places in the world, McDonald's. The poor baby was so excited at the prospect of his daddy taking him to McDonald's (or Donald's as Aidan calls it). When he saw where he was really going he just lost it. James took him into the daycare screaming and crying... and James had to leave quickly after taking him to the breakfast area so Aidan could transition and calm down. This is how I know this is indeed my child. He called after his daddy yelling, "SHOPPING! SHOPPING!" Had I been there I might have snatched him up and run away to the mall or Walmart. He loves shopping at Walmart because Walmart always has a "Donald's" in the house. Oh, I love that baby!!!

James went to work for a little while and then came home to pick me up for the second appointment. We arrived to find not one, but TWO interpreters waiting for me. Don't you love it? It was a mix-up, but I was covered. Only one ended up staying, and Sophie was great. The whole appointment went so much more smoothly. James and my friend, Shelly, were both sitting behind me for moral support. No chaos... no drama... straight to business... more listening.... more mapping... Audiologist was more pleasant. We went over all the equipment in the box... the cords, the batteries, the paperwork. It was pretty straight forward. There wasn't much change as far as how the CI sounded to me after the second day of mapping but having an interpreter there for anything I missed made me feel a lot less dazed, confused and frustrated.

Before I left, I went to the sound booth for a quick test. It was just the usual dinging and ringing sounds. I was no where near testing speech of course. When I saw the audiogram a few minutes later, I almost passed out. All I can say is... holy smokes... Even without having a clue what's going on with all the ringing and buzzing and whatnot, I was hearing sounds across the audiogram between 15-40db (it goes up and down in that range across the audiogram in a zigzag pattern). I have a sloping loss that completely wipes out and goes off the charts, so that is just dumbfounding to me. That also explains why I'm losing my mind. My brain hasn't got a clue what it's been hit with this week with those piercing high frequencies. I'll post my audiogram soon since I'm not explaining it all that accurately, but you probably get the idea. I must say I choked up a bit, and when I showed it to Shelly (also a former deaf ed teacher) I don't think she knew whether to jump up and down or cry.... so I think she was doing a bit of both.

That afternoon James and I picked up our little angel (with the lopsided halo) and were told he'd been telling the staff "bye bye" since noon. He was thrilled to see us, and we took him out to eat as a treat. No one felt like cooking anyway. No, we didn't make it to Donald's place, but I think the little guy was perfectly content just hanging out with his parental units.

Thursday, April 2, 2009

Activation: Part One

So, just what has it been like for me? Bells... lots and lots of bells... and nothing but bells. At first it was like standing in church tower with the bell clanging overhead and getting knocked around with the vibrations. Then, it was "reduced" to sounding like loud, mad, and ferocious wind chimes inside my head... just the constant tinkle tinkle of sounds times a thousand. Finally, it got to a point where it sounded like carrying on a conversation during a fire drill with someone 50 feet away and a hundred screaming teenagers between us. (If you've taught high school, you know what I mean!) Now, two days later, I've settled with the emergency broadcast signal continuously ringing all day long in my ear.

*****Disclaimer... this is a grumpy and cranky post. It gets better, but just not on this post... if you need some happy, light reading, skip this. :-) *****

I have a constant headache from the ringing, and it feels like I just got off of one of those gravity defying, death defying, spinning, nauseating rides at the carnival after eating two hotdogs, cheese fries, a shake, and cotton candy. Every tap on the key board is like the poor dog and the electric fence.. zap... zap... Why do I keep doing this to myself? ... and zap... Now, that I have elaborately described my utter misery with this fascinating life changing device and what a hero I am for typing at this moment (and did I mention the lawn guy is outside the window right now mowing), let me find my Wonder Woman cape and begin. (I know... eyes are rolling out there)...

Monday night, I went to bed feeling fine, but I couldn't go to sleep for anything. It was crazy as I only had about two hours total by the time morning came. On the way to the appointment, I found myself snapping at my poor husband and apologizing. James knew I was overly anxious and jittery, so he was more concerned about my emotional state going into the mapping than me being a bit snarly.

We arrived at the hospital where, unfortunately, I had no interpreter. They said I didn't ask for one, but the doctor's office gave me my appointments with them. I'd had interpreters for my surgery and just lamely thought I had one set up for activation. My friend, Becky, who works with the babies in a local deaf education program, came too. Aidan was with us since we didn't have a babysitter. We all got set up in the audiologist's office. I was hooked up to the computer and turned on. At first all I felt was a buzzing vibe and gradually some piercing beeps. It was not going to be a "Oh, baby, you can hear!!!!!!!" kind of moment (or day). I had to listen and listen and listen for sounds... and they were so quiet! I thought my brain was going to fall out while I was digging down there to hear something.

Meanwhile, Aidan played quietly for a few minutes with the quiet toys he loved the night before... He started getting chatty and acting like an almost 2 year old. *sigh* I knew that was going to happen. Meanwhile, my husband was standing due to lack of space and checking text messages (moving around) while I was listening for beeps. Are you laughing yet? I was so distracted. I finally was like.. "JAMES!!!" and then doing the cut throat motion. He was so sorry... poor guy! I must say my loyal hubby was awesome playing the paparazzi with the camera and video and trying to get a record of it, but it was just so crowded in there, it wasn't working. Please don't ask for video because I'd be embarrassed to show the world what a circus was going on in there and how cranky I was getting. Finally at some point, James apologized to Becky and me and said he was going to take Aidan out. That was really depressing because it had been important to me that James be there, and he'd taken the afternoon off at work to do so. He left at that point to take care of Aidan and couldn't come back in the office for the rest of the visit. I could finally concentrate better though, and James took Aidan to the cafeteria for corndogs and cake. I'm sure that was a lot more fun anyway. :)

A really big problem for me on Tuesday was communicating with my audiologist. She's the no-nonsense, extremely professional, and let's get to business already type of personality while I'm much more laid back and used to conversation that flows on both sides. Most questions I asked were greeted with... "and I'll get to that." I finally got to the point that I was too uncomfortable to ask any questions. I'm more used to working with men audiologists with big loud personalities, who listen to everything I say, give me feedback, and can crack a joke once in a while.

When she switched me from the test on the computer to actively listening with the external processor it was a shock to my system. The bells and beeps were all running all over each other and didn't stop. I couldn't wear my hearing aid in the other ear, and with all the racket in my head, I was supposed to lip read. Now all of a sudden the audi was talking a million miles an hour. It really felt like a torture test. I get motion sickness very easily and that's what all the bells and whistles were making me feel like. I finally realized that all the beeps and bells had a pattern. Each syllable would beep. There's a slight pause between sentences and some sounds would last longer than others depending on the rate of speech. That still didn't make it comfortable, but it was interesting. I wish I could say the words sounded like something other than beeps. Personally, I was really rooting tooting for Mickey Mouse and Donald Duck to make an appearance...instead it was more like bats in the belfry with church bells thundering. I did finally in the midst of the bells make out some actual sounds which was kind of exciting but the ringing just overwhelmed me.

My audi mapped one program at four different volume levels. We went over the equipment. At one point, I went out to the hall where Aidan was running James ragged. I wanted to see how they sounded. I actually made out Aidan saying, "hi mommy!" It wasn't an earth shattering moment, and I can understand him much better with the hearing aid right now. It's going to take time before I get that ah-ha moment. (Did I really just quote Oprah?)

It was good having Becky there because she occasionally she filled in the blanks when I couldn't understand. She's a teacher though and not a professional interpreter. The information was so technical and there was so much of it, I know I missed a lot. I did my best to lip read and follow. I requested an interpreter for the next day, and that brought a lot of drama that I didn't see coming. I was told I had to ask two weeks in advance by the audiologist and director, but I insisted that it was too much information for me to grasp without one, and they said whether I had an interpreter or not it was important I was there the next day. I felt bad about the confusion that day by not having an interpreter, but it was not without frustration and even tears at one point. Then I was told I could have one the following day but it was going to cost them twice as much. My head was really hurting at that point when I felt the pressure to decline the interpreter, but I was thinking of a local activist that would tell my students to stand up for their rights to understand and have an interpreter at all medical appointments. Her motto that she has kids repeat is "my mother is not my interpreter." She will have the say it again and again like a rally cry. It's funny but they were all in high school and needed to know that when they went in the big world they had a right to accessibility, and I knew I did too. Becky isn't my mother, but it isn't fair to make her interpreter either. I held my ground and said I'd really like one, but the situation was uncomfortable.

Finally two and a half hours after we started, we broke for the day. Except for a nap I had to take when we got home, I wore my CI til late that night, even through American Idol. Of course I had my hearing aid on too. Otherwise the singing just sounded like a hand bell concert gone wild.

I'm going to conclude part one here, but let me say that the next day was a big improvement when I went back for the second mapping... It was like night and day... interpreter included, baby in daycare, moral support sitting behind me, and a hearing test.

Stay tuned... this is as much as the bells and I can handle rehashing for now.