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!!


  1. Hokey-Smokes! What can I say, you said it all! :-) Some day, eh? Great progress on your CI. Here's to many more CI moments! But let us all pray and hope for no more "thumb" moments ! (yee-owie!)



  2. LOL... I don't hold back, do I, Dan??? One of these days I will attempt a short post... one day... :) Thumb is a survivor and doing much better today than I thought considering the trauma, drama and indignity the poor digit suffered. :-D Hope you are moving right along too! :)