Celebration Shots

I can't believe I neglected to post these pictures from Christian's 2nd Hearing Birthday celebration. We ended up leaving for our trip to Michigan on his actual hearing birthday, and decided to celebrate once we got back. Once again, our close family friends came to celebrate, and once again, we cheered on Christian, had cake, and drank an amazing bottle of wine. Christian loved his Lightening McQueen Cake!

I'm beyond grateful for the friendship and love that we share with our friends, especially Christian and Lily's Aunt Alison and Uncle Dave. They've held our hands and cheered us on every step of the way with our CI journey. We're so lucky to have them in our lives!

*yes, we used the cake topper from Christian's cake as a cork.

Mommy, Why Don't Some People Have a Cochlear Implant?

That was today's question on our way home from school. I knew one day it was coming, but I was hoping it would happen when I could actually look him in his eyes, rather than fighting traffic on Massachusetts Ave. How do you explain to a 3 year old that he was born deaf thanks to the Connexin 26 gene mutation? How do you tell him that he will always be deaf, that he will always need to wear his CI? I wasn't ready for that in depth of a conversation and to explain the Punnett Square of Gene Mutations. I'm sure that will come later.  So, here's my response in a nutshell, as I wiped the tears from my eyes:

"Oh, buddy, did you know that you make Daddy and I so proud? Well, God made you so special. When you were in my belly (Christian: I was IN YOUR BELLY? DID YOU EAT ME? EWWW!), no honey, when you were just a little baby, not even born yet (Christian: That was like when Lily was in your belly and when Tyler's Mommy had Baby Jake in her belly), yes, just like that. Ok, well when you were in my belly and before you were born, God decided to give you a very special gift. He decided that you were going to have your magic ears".

He was pretty quiet at this point, and just as I was getting ready to continue explaining about his special gift from God and how God just made him perfect, he tells me:

"God shined His light down on me with his magic wand. It was magic and then poof and then His light got really bright. There was thunder and lightening and it was loud. Mommy, do you want to go to the playground with Willis and Josie later?"

I just smiled and told him that I couldn't wait to play with him later this afternoon. My sweet angel boy, understanding in his own little way his special gift. It's been a while since I received one my love letters from God. I'm pretty thankful that He knew exactly what I needed to hear today.

Like Clockwork

It wouldn't be the holidays without some sort of drama with Christian's CI. Last night while at his grandparent's house, his CI was turning off for no reason. His Gram and Poppa have become quite the troubleshooters with his equipment, and when Chuck and I got the call (we were out running errands with Lily) that they were having some trouble with it, we knew it couldn't be good. They reported that they turned the system on and off again, took the battery out, and then even dismantled all 4 pieces, and it still was acting funny.

When we arrived, I tried everything, and it still wasn't turning on. I finally ran out to the car and got our "emergency kit", which includes a battery cage and a wheel of disposable batteries (we use rechargeables). That seemed to do the trick, but I'm still not convinced that the rechargeable battery is the culprit. I know better than that now, and usually when Christian has these intermittent failures, it's because of the controller or some other connection. So, Christian is wearing his back-up today and his in-school audiologist who was previously employed by Cochlear is going to take a look at it. I'm hoping that she can help us figure out what the issue is AND help us expedite a new part from the company.

From Silence To Sound

Looking forward to seeing this award winning documentary!
*Please disable the music on the left of the screen before playing the movie trailer*

Screw the iPhone or new Flat Screen TV. I want THIS!

We have no idea when we'll be eligible for the upgrade (no additional surgery is needed), but I am completely obsessed with Cochlear's NEW implant system, the Nucleus 5.

It has increased water resistance, which is my number one gripe concerning Christian's current CI (also made by Cochlear). It looks smaller, sleeker, and it has a lot of flexibility. I hope that the upgrade information is released soon so we can start to budget!

If you're going to be implanted with the Nucleus 5, or if you have a little one who will be, please keep me posted!

Back and Completely Inspired

I think it's safe to say that I experienced every single emotion possible this past week when I went to Nashville for the HLAA conference. I am beyond thrilled that I was able to attend, and learned so much that will help me in my journey as a hearing mother to a deaf child. Many tears were shed, mostly tears of joy.

I had the opportunity to attend some really great sessions and workshops, including the Research Support Symposium that focused on Hair Cell Regeneration. I cruised the exhibit hall everyday and visited with some really interesting vendors that included both our hearing aid and CI manufacter, and several different assistive devices that one day we'll need with Christian. I even had an opportunity to chat with some representatives from Gallaudet about my interest in their SLP program.

While the exhibit hall and the workshops were extremely informative, the connections that I made with other attendees were by far the most valuable component of the entire conference for me. I had the wonderful opportunity to FINALLY meet my online friends Abbie, Jen, and Laurie. These 3 ladies have been such a support for me during the past 2 years, and I was incredibly grateful to finally hug them in person. Abbie and I are very much alike in so many ways (we've always joked about that in blog comments and emails), but it was confirmed on Friday when we realized we had the same cut and highlight :) Jen welcomed me with her signature smile, and I had such a fun time out to dinner with her and beautiful family. And Laurie always seemed to be able to introduce me to the right person at the right time. My friend Mike, who lives in my area (and who nominated me for my scholarship to HLAA) made sure I didn't get lost in the hustle and bustle of the conference. I made some good friends thanks to their introductions!

I learned so much from these folks while I was there, and I am sure that they were all just about FRIED after all the questions I constantly bombarded them with. I think one of the hardest things for me as a hearing Mom is not knowing what exactly Christian hears (and doesn't hear). As adult CI users, they were able to give me their unique perspectives on the experience of wearing Cochlear Implants. My extent of socializing with CI users is the occasional CI playgroup that I attend with Christian. I really enjoyed seeing my friends interact with one another (and how we communicated together). There was one night when a group of us went to The Wildhorse Saloon. I was beyond impressed with how well everyone heard, and even was able to identify different instruments in the band that was playing. I of course, kept asking 'Do you hear the cymbals? What about the tambourine? Can you hear the lyrics?". I couldn't help it. My friends were such a great window into the world of Cochlear Implants, and the D/HOH community. I really appreciated their willingness to share their experiences, both good and bad with me. They welcomed me into their community with open arms (and ears!). I was worried at first how I would fit in, yet by day 2 of the conference, felt completely at home.

Attending the HLAA truly opened my eyes and my heart. As I was on the plane on Sunday morning heading back to my family, I thought back to the beginning of my journey with Christian. I was always so worried that he would feel alone. That he would be by himself, and on the outside. If I learned ANYTHING this weekend, it's that the miracle of the Cochlear Implant has opened up so many options for deaf individuals. It was a nice little glimpse into how bright the future looks for Christian.



Laurie, Abbie, Jen and I at the Birthday Celebration. This was one of the only pictures I can find of the four of us where we're not all laughing. We had such a fun time!


I think the only thing that the gang held against me was that we're a Cochlear family, and they all wore AB processors :)


By far, the funniest shirt I've seen. Abbie rocking the shirt!

One Year Later

A year ago today, we took our sweet boy to Hopkins for his Cochlear Implant surgery. I remember feeling so incredibly scared about all of the unknowns:

Would he get through the surgery ok?
How will he recover?
Are we making the right choice?
Will we know what to do with it?
Will he ever be able to listen and speak?

Well, if I would've known then, what I know now, it would've saved me alot of heartache and worry (and glasses of wine).

Christian was up and around the day after his surgery. Over the following months, his incision has healed so perfectly, that you can't even see it behind his ear. We made it through the whole process without ANY complications.

Leading up to the surgery, I remember worrying if we were making the right choice for Christian. Would he resent me for doing this when he gets older? Should we wait for better technology or medical advances? What about his residual hearing? We got over those fears, and pushed ahead. We knew that if we wanted to give Christian access to ever opportunity that he deserved, that a Cochlear Implant was the way to do it. And from this past year's experience, we are so very confident we made the right choice.

When we picked our implant brand, I was more than overwhelmed with the equipment itself. I couldn't imagine knowing what to do with all the cables, cords, and accessories. Now, I feel like a pro. I can troubleshoot the thing like an expert. In fact, I can handle Christian's CI better than our cable box. It's easy. It's THAT easy.

While Christian was an exceptional hearing aid user, I wasn't quite sure how he would be with a CI. Even with a severe-profound loss, Christian was able to pick up some spoken language. We were prepped by our team at Hopkins, that his CI rehabilitation could take many months, if not years to get him to speak. We were prepared for a very long road, and just prayed that he would be able to use his CI. Activation day came, and we expected little. When Christian showed immediate responses, and even repeated Lings, we knew our prayers were answered. Never in a million years did we expect Christian to do as well as he is doing now. 10 months post activation, Christian is testing at and above age level in receptive and expressive language. The kid is carrying on complete conversations with us, using 5-7 word sentences. His articulation is incredible. Christian is incredible. This whole journey is incredible.

I can't wait to see what the next year brings. As we approach his official hearing birthday (for all those outside of the CI community, the day your CI is activated, is technically your hearing birthday), we have much to celebrate, and much to consider. With his CI and hearing aid, Christian has amazed us. We can't help but wonder what an implant in his other ear would bring. For now, we'll take what we have, and celebrate our amazing little boy who will always, ALWAYS be my greatest inspiration.

Sharing the Miracle

I'm so excited to be speaking tonight at a local college about Christian's Cochlear Implant and our experience as a family. My good friend teaches a Sense and Perception class, and asked me to come speak about our journey. I've prepared my notes, and sent some handouts over to her to print. We're going to show Christian's activation video, and maybe something more recent demonstrating his amazing receptive and expressive language skills.

My good friends know that I usually have no trouble talking to complete strangers about anything and everything. When it comes to our journey with Christian's CI, I usually can go on and on for hours about it. Hopefully I won't bore these kids to death!

Celebrating Surgery

A good friend of mine just learned that her little boy, who has struggled with a progressive hearing loss, is now finally a candidate for a Cochlear Implant. I was overjoyed for her family, and am so excited to see how well he does once he's activated. And just two weeks ago, one of Christian's classmates received his second CI. We were equally as excited for this little guy's family, and know he is going to adjust just fine to now having two ears.

As a parent of a child with a Cochlear Implant (who is doing absolutely remarkable), I can't help but get excited and celebrate when other children will be given the gift of sound. I see how amazing the technology really is, and how it has completely changed my family's life. I am so thankful for Christian's implant, and will always celebrate his gift of hearing.

Imaginative Play

Over the past couple of months, I've really noticed Christian's imagination just blossom. Just as every 2 year old boy does, Christian makes sound effects for all of his vehicles. He makes them crash into the wall, and almost always exclaims "Oh no, car! CRASH!". He is completely obsessed with anything and everything that has to do with fire trucks. For his 2nd birthday, he got this amazing fire house set from Fisher-Price.. It is set up in a little nook in our kitchen, and is officially his favorite toy. He has named all of the firemen, with the help of his Nana and Daddy (Joe, Mike, and Leroy). I hear him throughout the day making Joe do various things such as "Go up the ladder Joe". My favorite is when he puts Mike on this trap door and says "Down the hatch Mike". He'll make up long audible stories about these firemen and all the things they do at the firehouse. I found them all laying down on the top floor, and he said "Firemen are taking a nap. Firemen sleepy".

My favorite is when he plays with his friends and they make up little scenes in the firehouse with their guys. He handed one of the firemen to his friend the other day and asked him to "Put Mike down the pole...Weee".

I can't help but just smile and laugh listening to my deaf son play like this. I never thought that I would hear him play and use the vocabulary necessary for this type of play. It makes me proud, and I feel so blessed to witness yet another Cochlear Implant miracle day after day.

Cables and Cords

This morning I went to a really interesting meeting with a representative from Cochlear. She was visiting Christian's school, and did a presentation on the accessories that come in the HUGE box that your implant center sends home with you.I have to be honest, other than the listening microphone, we haven't really used anything.

While being informative, it also was a reality check, reminding me that while my little boy has his amazing bionic ear which alows him to listen and speak, he is also Deaf. He will always have to work harder and rely on technology to do things that we do without even thinking. Talking on the phone will be a challenge for him. He'll rely on special MAPS on his processor. He'll use special cables that will boost the signal on the phone he is talking on(we just learned about these today). Talking with other parents with older kids today, I learned that talking on the phone is hard for these amazing children. They get tired and fatigued, because they have to work extra hard to listen.

I always hesitate to focus on the limitations of Christian's Cochlear Implant. It truly is a gift, and will allow Christian to communicate and be a part of the hearing world around him. Because of his amazing progress, even I have moments during the day where I forget that he has a severe-profound hearing loss. He talks, acts, and behaves like any other typical hearing child. Without his CI, I would have never heard him say "I love you", or watch him dance to music, or sing his songs. For now, I'm going to focus on what his CI has given us, and save the worries for when he asks me for a iPod in a few short years.

How Far We've Come

We had a little birthday celebration yesterday with our close friends and their children. While Christian's actual birthday was 5 weeks ago, his actual party needed to be postponed a bit due to his sister's arrival. With the help of our good friends who chipped in by bringing a moonbounce, and even making the cake, we were able to throw Christian a fun celebration with his buddies.

I was thinking back to his 1st birthday party that we had with all of our friends. My sweet little man, while happy and all smiles, couldn't hear us singing "Happy Birthday" to him. What a difference a year makes. Christian was actually singing "Happy Birthday" with us. His language is absolutely amazing, telling his buddies yesterday "Logan and Chase come downstairs?" and "Come on Jonah!", and even "Logan go play basketball downstairs".

Sometimes I have to just take a deep breath and really take in the miracle that is the Cochlear Implant. When we embarked on this journey just 9 months ago, I never thought in a million years that by his 2nd birthday he would be talking in 5-6 word sentences and singing familiar songs. We work so very hard with him, send him to the best school we can, and celebrate each and every new word or phrase with him. Christian is just WIRED for language, and it is so wonderful watching him blossom and interact with his friends. It truly is a miracle.

What's that smell?

My girlfriends in the neighborhood know that I'm pretty obsessive about Christian's CI at the park. We have learned to take it off before he goes on any plastic slides. He's been very helpful "handing" it to me (sometimes he throws it at me), when I ask him to take it off before he takes a turn going down. My friends just laugh with me (ok at me) as I scold my little guy for not sharing the slides or taking turns...and remind me "Um, Tina, you're holding his CI. He can't hear you".

A couple of Moms on various message boards (and Elizabeth from Cochlear Implant Online) have suggested using dryer sheets to combat the static that could possibly wipe out Christian's CI. I tried it yesterday, and I think I need to find a different fragrance...the Bounce Febreeze Citrus and Light scent SERIOUSLY clashes with my Jo Malone White Jasmine and Mint.

Sign Language as a bridge...

I know I've blogged about this before (forgive me, but I don't have time to find the link back to it at the moment...Christian is eating soup....any Mom knows that toddlers and soup is a gamble), but I wanted to bring it up once again.

I know that there are many different therapy options and choices out there when it comes to teaching our Cochlear Implant kids to listen and speak. I know when I was first researching therapy choices that I came across the notion that using signs in a CI home would only hinder my child's language acquisition. I am SO thankful that my husband and I completely ignored that nonsense. Christian's progress is amazing, and I do attribute much of it to using sign language as a bridge to spoken language.

Since the beginning, Christian has ALWAYS accompanied his signs with the word (or approximation of the word) that corresponds. We've always spoken to him while we signed. With his CI, when we have noticed that he had a bit of a problem grasping or understanding a concept, we sign and speak. And it seems that when he is able to associate a sign with a word, it just CLICKS.

I know every family and every child is different, but I would like to encourage families to explore using sign language to help foster language acquisition. From our experience, it's done nothing but complete help our little guy. Take a look at his spoken language list to the right of this blog...I love to brag about how well he is doing, and I feel like he is proof that sign language DOES NOT hinder language acquisition.

This Should Make You Smile...

On this VERY monumental and VERY serious day in our Nation's history, I decided rather than posting a VERY serious blog, that I would post this little video of my little guy dancing. Regardless of who you're voting for today, this should put a smile on your face.

Check out Christian dancing and grooving, and then stubbing his toe to Laurie Berkner. I never thought I would see my deaf little boy dance and enjoy music. And with the miracle of the Cochlear Implant, he can! :)

(Be sure to disable the music on the blog before you play. Scroll down to the right and click stop)

Happy Halloween!

Just a couple of pictures and a great video of Christian carving pumpkins last night-with some great words!



And here is our CI Pumpkin:

I think I found a winner...

Two of my really good friends, Janine and Kelly both recommended that I check out the Land's End Shop at Sears for a possible jacket for Christian. While I didn't find anything at the actual store (well, I did find an adorable argyle sweater for him and a cute hat for me!), once I poked around online, I found the PERFECT jacket for Christian. Now, I'm the hunt for an online coupon...Janine actually DUG THROUGH HER TRASH to find one for us, that just happened to expire that day. Now, that's a good friend :)

It's been really helpful to hear from other parents who have used fleece jackets on their little ones who wear CIs. I guess it just goes to show that audiologists and implant centers vary almost as much as us parents do! I think for this first winter, I'm going to play it safe.

Take a Look at Our Numbers...

Today is our 5 month anniversary since Christian's CI activation. It's hard to believe that it has only been 5 months since my little guy had his ears turned on and his world changed forever. So much has happened, and words can't even describe how incredibly blessed that Chuck and I feel to witness the miracle of the Cochlear Implant everyday. His vocabulary is ever-expanding, and he picks up new words EVERYDAY. I try to keep up with his consistent vocab usage list, but it's getting challenging since he has SO MANY WORDS.

I get the chills (and I still well up with tears) when I think back to that day in October of 2007 when our audiologist told me that Christian was deaf. I had a million thoughts and images flash through my head, and they all were silent. I never thought in a million years that my deaf son would wake up in the morning and say "Hi Mommy", or say "Thank You" after getting juice from his Daddy, or even protest and say "No!", when I ask him to stop climbing on our furniture. I never thought I would hear his sweet little voice. I never thought I would see him dance.

Yet, here we are. My deaf son is one of the most chatty little ones in the neighborhood. He loves to listen to music. He loves to dance. HE LOVES TO TALK. He's thriving in school. WE ARE SO BLESSED!

Today is also the day that we enter in the double digits of our countdown to meeting our Baby Girl. According to the ticker on the right side of the page, we have 99 more days to go until her due date. Which really means, that I have about 88-92 more days to go since I will be scheduling another C-Section. It's hard to believe that in just under 100 days, another life will join our family. We'll have another little laugh, another little cry, and another little blessing.

Today, on this cold and rainy day, I'm thanking God for the miracles that have been bestowed upon us.

I love the sound of feedback in the morning...

It's BAAACK!

Yes, we got the thumbs up from Hopkins to put Christian's aid back in his non-implanted ear. We've already seen marked improvement in Christian's localization of sound. He's already, after 4 days of having the aid back in, turning in the right direction of where sound is coming from. And, it's been quite the life-saver at the park, making the whole plastic slide situation a whole less stressful.

Christian was one of the lucky children who DID receive some benefit from his hearing aids during his CI trial. Although the tests labeled Christian as a severe-profound hearing loss kid, he surprised us all. We went into implantation with a verbal and chatty little boy, who actually had some words. I don't regret one bit giving him a little extra time with his aids before getting the implant. We do know the CI was his best option for acquiring spoken language, but the aids did just give us an extra boost in our journey.

Just a thought for all the parents who are going through the candidacy process, don't underestimate what your child's hearing aids can do. Keep them in at all times even if the charts, audiograms, and doctors tell you that your child may not receive benefit from them. Your little one may completely surprise you just like Christian did.

DA Beach...Round 2

So, I know I'm lucky. We're on our 2nd beach vacation of the summer, this time in North Carolina. We're with Chuck's family in this great big house right on the water. We had a rough couple of days getting Christian used to his new surroundings, but now he's sleeping like a champ and back to his silly self. In fact, I have a new word to report:

-occer (Soccer)


Maybe it's the pregnancy hormones, or maybe I just still haven't finished the grieving process, but I had a couple of hard times these past few days. Most notably was yesterday, watching my son with his hearing cousins, splash in the waves. I had this rolling wave of my own emotion come over me, with flashes of him growing up as a teenager, boogie boarding in the waves, but not being able to hear them crash around him with his processor off. I started feeling a bit sad, thinking that while he could hear our voices yesterday on the beach, could he hear the waves? The pelicans? The wind? I think I am having a really hard time not knowing what exactly he is hearing, and how he is hearing it. I'm hoping that some of my favorite adult CI users could give me some insight on this :)

Other than a couple misty eye moments, we're having a nice time once again as a family. Christian is enjoying his time with his grandparents and cousins, and I'm enjoying these last few days of summer before my baby starts school next week.