Saturday, March 28, 2009

A-B-C's of Aiden's World

(I just realized I never posted this! This is from last weekend! OOPS!)

A = Aquarium
Last weekend we took a trip to the Baltimore Aquarium to explore the wonderful sounds it has to offer. The place is amazing and Aiden loved every minute of it! His sister wasn't as excited about the whole trip, since she had just been there with her class, and his older brother decided he wasn't "into fish"went to hang at a friend's house instead.

The highlight of our tour was when we were walking through the rainforest, a bird screeched out so loud that we all jumped, including Aiden. The look on his face was priceless, but even better - he pointed right to his ear!

B = Birthday
On March 17th, our little man turned ONE YEAR! I can't believe he's one! We went to Ohio the weekend before his birthday to sing the birthday song with family. We never got to do this in Texas, so it was just wonderful sharing in our babies big day with all of his aunts, uncles, cousins, grandma's and even his great-aunts!! My mom even drove in from Wisconsin! It was so good to see her and have her there with us! The best part of it all was singing happy birthday to Aiden as he wore his CI. No crazy reactions (the whole day was overwhelming for him and he was just 5 days post activation), but just the thought that he was hearing something, brought tears to my eyes. What a year this kid has had. (video montage on it's way).

"hmmm ... I think I'm going to like this!"

Aiden with just a few of his cousins cheering him on!

... and the end result.

Here is Aiden with us, his grandma, and his great-aunts who have been so wonderful keeping up with his story and saying so many prayers for him and our family!

C = Curiosity
The kid is like George ... Curious and into everything! Like I've said in previous posts, Aiden is one determined little boy. He'd rather do everything that he shouldn't. He's definitely my handful out of all three of my kids. I'm glad he's like this and we just love his outgoing, mischievous self ... or so I say that now.

He wanted to look out the window with the cat!

All within a matter of seconds!

Overwhelmed, Amazed, and Tired

I have forgotten how life with a one year old is so nonstop (after 8 years since my last child), not to mention, one with a cochlear implant. His naps are down to one a day, at which time I go like hell trying to do all the things I can't when he's awake, and when he's up, there's no sitting down (have no clue how I got it all done when I worked full time ... I think I need to go back!). The boy is into everything!

This, in addition to a laptop that gets on my every last nerve with its turtle speed, and a pretty new desktop with a virus that needed restoring (but of course before I could do this, I had to save the hundreds of pictures and videos on it ... an all day task which turned into a forever task when you have a nonstop one year old! WHEW!) Therefore ... no recent blog updates!

The last couple of weeks have been a bit overwhelming. Despite lack of sleep on both our parts, (the boy is up at least two times a night, sometimes for hours at a time) he is a ball of energy. What happened to the day of playpens? He thinks the only way he can play with his toys is if we're entertaining him. And while I love all the language he gets with playtime, he needs to explore his toys on his own too ... in a limited area.

Then we add in the CIs. I was so excited to be done with the hearing aids. I thought it was the ear mold he hated and that's why he constantly tore them off. Nope. As with anything, there are good CI days and bad CI days.

  • Good day = CI on most waking hours. Still working on keeping it on in the car and in the high chair. Pilot caps are not working as he just fights me tooth and nail. For a one year old, he is pretty strong, and in the end, usually wins. I need to go buy some wig tape to help the BTE (behind the ear/processor) piece stay on. Yesterday I did bend the bottom ear part around his ear lobe and into his ear a bit more, and this seemed to really help.

  • Bad day = Mom following baby everywhere to consistently replace coil on head only to be ripped off and thrown by baby.
Thank goodness we've had way more good days than bad days.

All in all, I believe Aiden truly loves to hear. He's responding more to voice and some environmental sounds. He's been responding to all Ling 6 Sounds , /m/, /ah/, /oo/, /sh/, /s/, /ee/, and is even imitating some of them (/ah/ and /mm/). Last night I was playing peek-a-boo with him and when I'd say "BOO" (covering my mouth with my hand), he'd cover his eyes and laugh. My heart melted and I couldn't get enough of it!

We're back to square one with our therapy. Here's what we're working on now.
  • Distinguishing between long & short sounds - For example, "aaaahhhhh" vs. "eee-eee-eee".

  • Turn taking - I've also call this the Power of Pause. When I make a sound, I'll wait for him to respond, then after he makes a noise, I'll make the sound again. This initiates taking turns.

  • The /s/ sound - He doesn't respond as much to /s/ as he does the other lings. This is a high frequency sound and a little more boring. We use the teapot to imitate this. I pretend to pour the tea (while making the /s/ sound), then drink it (gulp, gulp, gulp) then "mmmmm" and rub my belly. He loves this!

  • Face parts - Eyes, ears, nose, mouth ... face parts have great vowel sounds. We point out face parts on everything - in the books we read, on his toys, on us, on our cats. I'm just waiting for the day when I say a part and he actually points to it!

It is hard because Aiden was such a good hearing aid user and we were seeing a lot of this already, such as him imitating short and long sounds, turning to his name, babbling, vocalizing back and forth with us ... things I know we'll see again in time. Patience and hard work. I keep reminding myself of this. Patience and hard work. It will come.

We're also trying to find a good morning and nighttime routine. In a perfect world scenario, I'd love to be able to read him a book every night with his CI on, then lay him down for bed, but that's not working. He seems to need to have them off a bit to settle down and drink a bottle. I'd love to hear what others do.

So this is where we're at. Next Tuesday his left ear will be activated and I can't even imagine keeping two CIs on, but I am so excited to have them both turned on. It's what we wanted since day one. I'm praying that it's sooner than later that he WANTS to wear his CI's and starts realizing the difference with them on vs. off.

With all this said, I still wake up everyday with a smile on my face, as I put on his CI, knowing that they're the best gift we could ever give him! What a simply amazing journey we're on!

Friday, March 20, 2009

Nine Days Hearing ... A Little Rockstar!

I have to brag ... it's a mom's right, right? I can't help but be all smiles with what we have seen since Aiden's right ear was activated just less than two weeks ago! I wasn't expecting much the first few weeks. In fact, I did a lot of mental preparations that I wouldn't see too many responses from him the first month. Boy has my little man proven me wrong!

This past Wednesday, 9 days after activation, we had our second audiologist appointment. The first thing they did was put him in the soundbooth to get a good audiogram on his most recent map (which was the third time being "turned up"). Let me say that he was turning his head to tones that I could barely hear! All in all, he tested with pure tones at 25db across all frequencies and for speech awareness thresholds, he tested at 15db!!! What does this mean? It means my baby is hearing conversation levels (30db) and water dripping (20 db in low frequencies) and whispering (20 db in higher frequencies)!

As I sat there holding him, it took all I had to hold back my tears! Then the audiologist spoke "Aaaiden, bop-bop-bop, Aaaaiden", in a normal, almost whispering voice, and he looked up - not at the speaker, but at her directly behind the window, not just once, but everytime she said it. Here I was watching my deaf baby turn consistently to tones and speech ... all through the miracle of the cochlear implant! Tears just rolled down my cheeks.

Our audiologist was amazed at how well Aiden did so soon after activation. She didn't change anything with his map and feels we're where we need to be for now. We'll monitor him over the next couple of weeks at home and through therapy to make sure he maintains his responses. His surgeon stopped by too to see him and was amazed at our little rockstar's audiogram. If everything works out, we'll be activating his left ear on March 31st.

Other amazing firsts I've seen at home are:
  • When running his bath water I let him watch with his CI on. Then before I put him in I splash the water for him to hear since he can't wear the CI in the bath. The look on his face when I did this the first time was priceless.
  • He has stacking stars that light up and play music when you touch the top button. He has always loved pushing the top button to watch the lights. He pushed it the other day and heard the music for the first time ... I know he heard it because I've never seen him crawl so fast into my lap!
  • As we stood waiting for the microwave to warm his milk, he looked right at the microwave, then back at me, then back to the microwave, as it sounded "beep, beep, beep".
  • Great friends of ours sent Aiden a Police Cycle Rocker for his first birthday that makes some pretty loud noises. After Aiden's daddy got it all put together and played the sirens and horns, Aiden just sat there in awe ... he'd look at the rocker, look at us, back at the rocker and then crawled real fast into his daddy's lap!

He's still not turning to his name, but again, he doesn't know yet that the sound he hears now for "Aiden", is actually his name. So we've been playing name games with him. We're also easing back into reading him 10 books a day, and becoming a home full of language! We've also started back to our Auditory-Verbal Therapy (AVT) once a week, which we're back to square one with all our listening lessons. At least this time I have a good feel for it all.

I have to say though, getting back into all these appointments has been crazy. I haven't been great at blogging lately because my life feels so nonstop right now. It has been very overwhelming trying to keep up with the newness of one CI, his appointments, trying to make sure I'm providing him a language rich environment, Aiden's brother, sister, and daddy ... whew! I've stopped myself many times this week to remind myself to breathe. Step by step ... one day at a time and it will all come together! We have a lot of ! Aiden's first birthday was also this past week, I'm hoping to get pictures & story posted this weekend!!

Tuesday, March 10, 2009


Oh my! What a day yesterday was! Aiden did an awesome job at activation and had some truly fabulous responses! All in all it was, as my daughter always says, THE BEST DAY EVER!

When I posted the other day about being "slapped back into reality" of Aiden's deafness, well, yesterday was so exciting that him being deaf was the last thing on my mind ... because all I could think about was what a fantastic listening journey we have ahead of us! This is all so surreal ... all day I couldn't believe we were finally at this point! We have so much fun and exciting times ahead of us!

Aiden is just such a happy-go-lucky kid. We truly are blessed. When our audiologist first started the sounds, Aiden didn't do too much, but then started pointing to his ear a bit (he used to do the same thing in the soundbooth with his hearing aids). After the first couple of tones were played, everytime he heard a sound he'd try to rip the coil off his head. We went through many listening activities, starting with tones, then onto voice, then onto instrument noises. I captured a little bit of each in the video.

Keep in mind as you watch that the Nat. Geo. photographers were there shooting pictures for the article Aiden's being featured in (coming out late this year). Aiden really took to one of the photographers last time he was here, and it was amazing how Aiden remembered "the man with the camera" and was instantly drawn to him again! What can I say ... my boy loves the camera!

At the end of the video I posted a bit of Aiden just crawling around with his new "ear" while our audiologist explained the HUGE suitcase of goodies and information with us. All the while I thought this "suitcase" included merchandise for both ears ... NOPE ... we'll get a whole other one during Aiden's second CI activation! I need to find the time tonight to just sit down and go through it all. Wow there's so much to learn still! But I am SOOOO ready to get this show on the road!

At the end, our simply amazing surgeon, Dr. Niparko, came by to see how everything went and take a peek into Aiden's ears. He said the left side is still a bit swollen, but it should be gone within the week and that everything looked great! We snapped some pictures with our team and then headed home. As soon as Aiden hit his carseat, he was out cold! He was so wiped from all that hearing!

When Aiden's big brother and sister got home they both ran up to him to check out all his new equipment. He didn't have it on at the time, but they couldn't wait for me to put on his new magic ears so they could talk to him and see his reactions! They both talked sweet nothings into his ear and gave him lots of lovin'! I loved seeing their enthusiasm for their little brother ... another favorite moment from today!

Remember, this was Aiden's first programming session (mapping). So right now, the sounds he hears are pretty soft still. Our audiologist said that they may sound like Donald Duck or Mickey Mouse to him at this point, but over time, he will start to put meaning to each sound he hears and things will become clearer; this is why therapy is so important. We go back this Wednesday and then again a week from Wednesday to "turn him up".

I had a nice conversation with our audiologist yesterday too about activating his left ear. After talking to her, I really do understand her reasoning on wanting to get a good stable map on the right ear before activating the left. So we're going to take it step by step over the next week and see how Aiden does and then plan the second activation. I feel good with this and like I told her ... it's Aiden ... our little superstar ... and he's going to do absolutely fantastic! *SMILE*

(Make sure you turn off the music on the right before playing the video. This video is not captioned yet).

Sunday, March 8, 2009


Does that ticker really say 1 more day until Aiden's activation!?!?! I can't believe it's finally our turn! During this journey, I have met many families with deaf/hoh children with CIs and I've watched many activation videos, with tears, feeling like our day was never going to come! AND HERE WE ARE! It's Aiden's turn to hear!

My stomach is a mess. Aiden's daddy & I just got done reading a 70 page "users manual" on the Nucleus Freedom by Cochlear, watched a bunch of CI activation videos, and reread other's blog stories, all to prepare for what we're about to learn tomorrow. I'm wondering if I should have bought batteries already, wondering if I should already have a dry aid kit, wondering a whole lot that I wish I would've already asked. The whole process scares me. I remember being terrified about being able to take care of Aiden's hearing aids, but Cochlear implants are a whole new ballgame!

I remember how scared I was the days before Aiden's first hearing birthday, the day he got his hearing aids. I was scared the aids would be a constant visual reminder that my baby is deaf. There hasn't been one day that's gone by since that moment that I don't think of him being deaf, what his world is like. The aids reminded me everyday that with a lot of hard work, my baby could hear and speak. We've worked hard this year to stimulate that hearing nerve, to get any sound to him. Tomorrow we're getting another visual reminder ... the external parts of his implant, yet this time, it's different. We have some experience under our belts, we have some clue of the hard work we have ahead of us, it's very exciting. Yet, in the same breath, it's another slap back to reality ... Aiden is and always will be deaf. If he wants to hear, he will always have to wear some sort of device. Another visual for questions, for teasing ... but we're ready for it all and thank God everyday for the blessings in our life.

We're going to do our best to tape it (I have two video cameras ready to go) and I will post his video as soon as I get a chance. I have no clue what Aiden's reaction is going to be, but no matter what, we know we have an amazing journey ahead of us. We thank all of you for your prayers, well wishes, and being a part of Aiden's journey to hear. HEAR WE GO!