Our precious little boy, Aiden, was diagnosed at birth with profound hearing loss in both ears; he was born deaf. This site is to help journal my feelings, keep family and friends updated on our son's journey, but more than anything, I hope our story can help ease another family's worries as so many other families have eased mine.
Another chapter in our life opens ... this is Our Journey to and beyond cochlear implants ... Our Journey to let Aiden hear.
Another great conference, through the First Sounds-First Words program, will be held on March 21st in Fort Worth,TX. This one is for PARENTS ONLY of children with hearing loss, and once again it's FREE!!! Top notch professionals will be there--Carol Flexer, Jane Madell (she spoke at the first conference we ever went to, right after we heard of Aiden's hearing loss, and she is wonderful!), Marguerite Vasconcellos, and Denise Wray. Each presenter will provide two short workshops during the day (see below). Parking, materials, breakfast, and lunch are all provided! This is one I've been looking forward to all year! I'm still trying to arrange a flight to DFW ... what a learning opportunity for parents with deaf/hoh children!
Details from the flyer are below.
Participants can choose from the following topics (subject to change):
The Listening Brain: The Basis of Talking and Reading (morning) Theory of Mind: A Critical Factor in a Child’s Cognitive and Social Development (afternoon) presented by Carol Flexer, Ph.D., CCC-A, LSLS Cert. AVT, University of Akron, Akron, Ohio
Audiology & Technology: What Parents Need to Know (morning) Auditory Neuropathy/Dys-synchrony (afternoon) presented by Jane Madell, Ph.D, CCC-A/SLP, ABA, LSLS Cert. AVT, New York Eye and Ear Infirmary, New York, N.Y.
Navigating Mainstreamed Education for Children with Hearing Loss (morning) Coordinating Curriculum in Therapy for Children with Hearing Loss (afternoon) presented by Marguerite Vasconcellos, MS, CED, LSLS Cert. AVT, Bucks County Schools, Doylestown, Pa
Emerging Literacy for Children with Hearing Loss (morning) Books and Babies: It’s Never Too Early for Reading (afternoon) presented by Denise Wray, Ph.D., CCC-SLP, LSLS Cert. AVT, University of Akron, Akron, Ohio
This event is FREE and sponsored by CVS Caremark Charitable Trust Foundation. Space is limited so please register soon. First Sounds-First Words is an educational series made possible through a generous grant from CVS Caremark Charitable Trust.
WHAT: First Sounds-First Words Program For Parents Only Listening, Learning and Literacy for Children with Hearing Loss
WHEN: 8 a.m. to 3:30 p.m., Saturday, March 21, 2009
WHERE: Cook Children’s Medical Center North Pavilion Classrooms and Hochberger Auditorium 801 7th Avenue, Fort Worth, TX 76104
"Why did you get him implanted if hearing aids were providing him sound?"
"What is that poking from his head?"
We've had many questions like these since Aiden's surgery so I thought it'd be good to do a couple posts about cochlear implants, the activation a.k.a. mapping sessions a.k.a. "turning on his ears" and the therapy that must follow in order for Aiden to be successful with his implants.
Let me preface this all with I am not the expert. I will do my best (with the help of the Cochlear website and other references), to explain all this.
I'll start with the difference between a hearing aid and a cochlear implant.
Hearing aidsamplify natural sounds. People who wear hearing aids (mechanically) hear the same way a hearing person does. But no matter how loud the sound the hearing aid produces, it will not provide the clarity needed to someone with Aiden's degree of hearing loss to understand all environmental and speech sounds. This is why he was a candidate for cochlear implants.
Cochlear implants don't make sounds louder. They work by bypassing the damaged part of the ear and sending DIGITAL sound directly to the auditory (hearing) nerves and then on to the auditory centers of the brain. This is a different type of sound Aiden will receive then he did from his hearing aids or that you and I hear everyday. We hear acoustically whereas Aiden will hear digitally.
BRANDS
There are three brands of implants we had to choose from, Cochlear, Advanced Bionics, and Med-El. We had a gut feeling of which brand we wanted right away. Yet still, I continued to research, and question, and doubt our first choice, all up to just days before we had to tell our audiologist which brand we wanted. This wasn't a choice we could change our mind about once done, this was a lifetime decision we were making for Aiden. I don't question our decision today and I believe it's important to feel good and secure with the brand chosen. I do believe though that all the brands are wonderful and in the end, with the proper therapy, do the same job.
Some things we looked at when making our choice was:
Asked our audiologist and surgeon what they worked with the most. We felt it was important since they would be working closely with us to surgically implant and map Aiden.
Talked with other parents and asked them pros and cons of their decisions. We also met kids with each of the three implants and saw the different wearing options.
Different wearing options for each brand for NOW and the near future. We're not worried about how Aiden will wear the equipment in 10 years from now, because by then, they'll most likely have new external equipment.
And because I am a little (ok a lot) OCD, I did put together a spreadsheet comparing every "engineering" aspect of the brands, but soon realized I'm not an engineer and it just got too technical ... (this is where my husband steps in and reminds me that we know what we want so just tell the audiologist).
Ultimately, all brands are amazing. The success lies in the auditory training after activation. If a child is not provided extensive language opportunities, it won't necessarily be the implant that's failing. So when you hear me talk about every little thing I do, know I already know I'm nuts, but know even more that I'm doing it to feed Aiden's auditory brain every little bit of language that I can! It's the key to his success.
The Equipment
We chose the Nucleus Freedom by Cochlear for Aiden. We like the different wearing options from toddler to preschooler. We like their reliability and success rates. We like their "splash-resistant" design. We like their technology upgrade capabilities. We like their battery options. We like their customer service reputation. They just felt right for us.
This is the internal and external pieces of the Cochlear product ... the "mechanics" to help Aiden hear. (This information is directly from the Cochlear website. My comments are in parentheses).
1) Earhook - sits on top of the ear to hold the sound processor securely in place.
2.) The Processing Unit - houses the main "computer" for the sound processing system. Features microphones that help to pick up sound from speech and the environment.
3) Behind the Ear (BTE) Controller Option - sits behind the ear and features buttons which allow for adjustment of volume, programs, and sensitivity. (Also holds the batteries).
4) Coil/Cable - connects the sound processing unit to the implanted "magnet" on the other side of the skin. It helps to transmit the electric impulses that enable hearing.
5) The Magnet - sits in the middle of the coil and connects with the magnet on the other side of the skin. This connection between the magnets helps conduct sounds to the hearing nerve.
6) Cochlear implant body - made up of titanium and silicone (this is what we see protruding from Aiden's head right now)
7) Electrode Array - extends from the main body of the implant into the Cochlea (it is the end of this piece that is inserted and wrapped around the Cochlea). This is the main piece of the implant that delivers sound to the hearing nerve.
Drew's dad, did an amazing job in this videoexplaining the Cochlear equipment too. I highly recommend checking this out! Very good!
So, as you can see, there are internal and external parts. Both must work together in order for Aiden to receive any type of sound (along with the activation/mapping sessions). He's all set with the internal parts and at activation on March 9th, we'll receive the external parts, and they'll "turn on his ears". This is why Aiden still cannot hear right now.
Here is what the external pieces look like on. At first, Aiden will have what is called a "Babyworn" setup (click to see a good picture of it on the Cochlear website). With this setup, the battery pack/controller is pinned to his shirt and he will just wear the processor on his ear. I am very excited about this wearing option! Once he gets older, and ears get bigger, he will be able to wear the whole thing on his ear as you see in this diagram.
I cannot stress enough that Aiden will ALWAYS be deaf. This is not a cure for deafness by any means ... it is a solution to help Aiden hear. If Aiden does not have the coils (the round piece) attached to his head on each side, he will not hear. If one side falls off, he will just hear from the side that is attached. He will (hopefully) NOT wear "his ears" when bathing, swimming, or sleeping. Other than that, Aiden will have on his "ears" at all waking moments. But when they are off, his world will be silent.
Coming up ... What is "activation/mapping" and what will Aiden hear once he's activated.
Aiden's done a wonderful job with recovering from his surgery. He was still down a bit the day after surgery but by day three (last Friday), he was 100% Aiden again. For about four days though he slept very little throughout the night. All we could attribute it to is the pain from the magnet and the incision. I remember when my grandpa got his pacemaker, we could see it protruding quite a bit from his chest and everytime he raised his arms it would hurt him. I'm sure it was similar for Aiden when he was trying to sleep.
Surprisingly, Aiden left his bandage on the whole two days! I couldn't wait to wash his head! I was so nervous to take the bandage off, yet anxious to see how it all looked. He was still pretty swollen and his poor little ears were sticking out from it all! I couldn't believe how much the magnets protruded and hoped that it was more swelling than anything. They made an incision a little over an inch behind each ear. Here are some pictures from the day I took his bandage off (last Friday - two days after surgery).
Left ear - the incision/stitching was done more behind the ear, but the magnet definitely protrudes more on this ear.
Right ear - the incision was further out and bigger. You can barely see the magnet on this ear, even just two days after surgery.
Here he is playing with a balloon his TOD brought by. Look at those ears!Just another ear shot and a great messy face!
Now a week later, his incisions are healing quite well and the swelling has really gone down. As Dr. Niparko told us the day of surgery, he was able to fit the magnet on the right side snug into place, so it doesn't protrude too much. But the left side is a different story. The doctor said he had a harder time finding a snug place. He didn't want the magnets at totally different levels on each side, so the magnet on the left protrudes quite a bit. But when Aiden gets some more hair, you won't be able to see it as much.
These pictures are from last night - one week and one day from his surgery.
Right ear - can barely see incision anymore but WOW can you see that magnet! For all you experienced CI mommies ... is this normal?
Left ear - can still see quite a bit of the incision, but it's healing very nicely. I know this picture isn't as close up, but you can barely even see the outline of this magnet!
Ears going back to normal .... thank God!
I've been having a hard time with the thought of Aiden not having any sound right now. At least before, I knew he was getting something from his hearing aids. My baby's not getting any sound right now, and we've seen changes in him. He doesn't "talk" near as much as he used to. In fact yesterday he made a combination of two sounds and I ran over to him smiling and clapping and yelling "Yay!". I was shocked to hear it. All we get now are moans, and even those are few. He's been very quiet. He also isn't clapping his hands like he used to. After everything we said to him he would always clap and we'd yell "Yay!" Not anymore ... today he did take my hands though and clap them together and smile. Shows us just how much he was getting from his hearing aids. We know though, that he's going to get even more from his cochlear implants and we can't wait for what's to come!
Congratulations Aiden! We can't wait for you to hear with your "new ears"!
We're home and everything went great! Aiden's sleeping right now so I thought I better update before he gets up, because who knows what tonight and tomorrow will be like. Here's how our day went.
The day started close to 4:30am. We had to be to Johns Hopkins by 5:30am for check-in, surgery at 7:30am. Luckily for us, we don't live too far away, and even had time to stop and get coffee on the way. I was a nervous wreck, Aiden was all smiles. He had no clue what was about to come.
We were called back to pre-op around 6:30 and then it was just person after person coming in and asking questions, nurses, two anesthesiologists, two different doctors (plus residents) who were going to assist Dr. Niparko. All I wanted was to see our surgeon, Dr. Niparko, to know we were all set. Something about him calms me ... it's the same something that nine months ago made me feel he needed to be the one to implant Aiden. And then he came and I got all teary eyed. He reassured me that everything was going to go just fine. He told us that surgery would be right around 3 hours and no matter what, they'd come out at 10:30 to give us an update.
They allowed one of us to go back with Aiden and I chose Aiden's daddy. I tried during his MRI but couldn't watch Aiden struggle as they put the mask on. Within minutes Aiden's daddy was back and Aiden was out. It was just a bit after 7:30am.
We went and ate a bagel and I got more coffee. Then we just went and sat in the waiting area. Aiden's daddy slept (he says he sleeps when he's nervous ... I say men can sleep through anything), and I tried to read, plan the next couple weeks dinners, etc. Before I knew it, it was 9:30. This is when my nervous belly came back and time went sluggishly by. I got even more nervous as I watched 10:30 pass us by, but just before 11am, the surgeon came out and we jumped up to hear.
Dr. Niparko said the whole surgery went absolutely wonderful. He said that Aiden did have quite a bit of inflammation, but no infection. He got a full insertion on both ears and said that both ears have a near identical insertion ... which means that both ears will hear pretty much the same and that mapping will be that much easier. I will post later about the whole insertion process and show pictures of what the implant looks like, right now I'm just too tired.
Then we got to go see our baby. He was just coming to from anesthetic and of course very fussy. He was sucking down pedialyte like crazy. I got him in my arms and fed him a bottle as I rocked and calmed him. It felt so great to hold my baby, knowing the hardest part (emotionally and physically anyway) was done. He made it through. My baby is ready to hear. Next stop ... healing then activation. We left the hospital by 2pm and were home soon after. I can't believe how short the day actually was, especially with bilateral implants! But even more so, I can't believe we're one step closer to our baby hearing! A lot of people ask, "can he hear now?" and no he can't. His implants are inserted, but now they need to be "turned on" and then lots and lots and lots of therapy. Again, another whole post for later. Today was a very important day. We are so very thankful for Dr. Niparko and his team at Johns Hopkins. We couldn't have been in any better hands! They all did such a wonderful job with our baby and we can't thank them enough. I'm sure I'm missing things, but I'm worn out. Aiden's been sleeping a lot, but should be back to himself tomorrow. We will try to leave the bandage on until Friday, but I have a feeling it will be off before the end of tomorrow. All I know is that now that it's all said and done, I feel this huge sense of relief ... I can breathe again. Even more important, I know that today Aiden was given the gift of the ability to hear by an amazing surgeon. Now it's up to us to make it happen. Hearing world ... "hear" he comes!
It is finally here. Tomorrow Aiden's ears will be blessed with the miracle of cochlear implants. Tomorrow Aiden's surgeon will provide him with the opportunity to hear. Tomorrow is another step, a HUGE footprint, in our long journey to help Aiden hear and speak.
I will never forget the day almost ten months ago when they told me my son was deaf. All I could do was cry. and cry. and cry. Ten months ago I heard this term "cochlear implants" for the very first time. "WOW!", I thought. They'll simply surgically implant this "thing" in my baby's head and he'll hear! We went home and googled cochlear implants and saw the head gear Aiden will have to wear the rest of his life, a small price to pay for the gift of hearing, yet, we still cried. and cried. and cried. I gave myself time to grieve. I had to get it out. Then I jumped into learning all I could, got Aiden into therapies, got him his hearing aids, created a household that is rich in language acquisition, created an auditory-verbal environment that has become part of our everyday life ... and we've been going full force ever since.
My crying spells came fewer and fewer in between. Aiden blossomed into this child that you would never know was deaf, unless you screamed at the top of your lungs behind him and saw he had no reaction - none what-so-ever. Aiden has provided me this unbelievable strength, it is him and his WANT to hear, his DESIRE to explore, his DETERMINATION to do what he wants to do, that has kept me going. This kid is amazing. This kid is going to do amazing things.
So tomorrow's our day ... his day. I have emotions running wild inside of me. This is a day of no return. It scares me to death thinking of handing my baby over for a four to five hour surgery. I totally trust our surgeon ... which I still can't believe is the one I found 9 months ago, looked at my husband and said, "This is the man that needs to implant our baby." And he is. And he's one of the best. But even more so, I trust God. I thank Him everyday for Aiden and for making Aiden healthy in everyway. It was Him that put us here in Maryland and I have the utmost faith in Him.
We have also been so blessed this whole journey with love and support from family and friends and we thank ALL OF YOU! Some examples of the outpouring of love and support we get include:
My mom, she has been overly supportive throughout. She answers that phone everyday, even though she's working, to listen to me tell a funny Aiden story, or to let me vent, or to cheer me on through my tears. She has cried with me. She is one of my biggest supporters, sending learning toys, videos, books to Aiden to help in his therapy. She is my hero.
My mother-in-law, a very devout Catholic, is always letting us know all the prayers she has sent out for us and Aiden. She called the other day to let us know that tomorrow, Aiden's surgery day, is Our Lady of the Lords (Blessed Virgin Feast Day), which is the day of miracles. She is an amazing woman and I'm lucky to have her in my life!
Aiden's daddy's aunt, Sister Ann, is a retired nun. One of her teachers, Sister Julie Maria McDonald, is still alive, and has been praying for Aiden throughout his journey. We found out the other day, that Sister Julie Maria has spiritually adapted Aiden. We've never even met her, but Sister Ann has shared pictures with her. She took one of Aiden's pictures and sketched him in Jesus' arms. I can't wait to see it.
ALL of our family & friends have been in the cheering stands all along! Always asking how things are, sending prayers and good thoughts, giving hugs and sending love. WE ARE SO LUCKY TO HAVE EACH AND EVERYONE OF YOU IN OUR LIFE!
All of my blog buddies. I have created some wonderful friendships through my blog mommies. I've learned from all of you. We've never met, yet there's such a connection. Your children have provided me so much hope! I cry as I watch videos of your babies hearing for the first time, speaking in complete sentences (at 2!), singing, dancing to music, doing things I thought my deaf child never would. YOU ALL ARE AMAZING! I can only hope to help others as you have helped me and that one day, another mommy will cry as she watches Aiden speak, and sing, and dance, providing her hope that her deaf baby will do the same one day.
Tomorrow is going to be a GREAT day, tomorrow we take another big step. Day by day, step by step. I've learned that this journey is not a sprint ... it is definitely a marathon ... and we have quite a ways to still go ... but we've had a great start ... with an amazing group of people cheering us on!
------------------------------------------------------------------------------------------------ By the way ... on another note, the Nat. Geo. shoot went very well! Aiden was a true trooper, loving every bit of it! He even kept on his hearing aids for quite some time. The photographer came last night and spent a couple hours with us, then again today and spent the whole day here. He was great with Aiden and Aiden gave him a good show of his world. He signed light and eat, clapped his hands when I said "Yay" (with no visual cues), imitated me saying "mmmm" and "ahhhh", and of course, gave a ton of raspberries! They were very impressed with my little man, his nonverbal communication, and of course, his smile.
I don't know what I can say about the article yet, but I'll check on that tomorrow.
Also, just to let you know, Aiden's surgery is outpatient. We have to be there by 5:30am and they're supposed to start at 7:30am. The surgeon said it should be around 4 hours and that we should be home by dinner! I'll post as soon as I get a chance!
I've been meaning to update Aiden's blog for quite sometime, but time seems short these days. We've all been sick, I had a long lost friend come spend a wonderful four days with me, and over the next five days we are going to be VERY busy.
On Facebook, there was a note going around "25 Random Things" and I truly enjoyed reading everyone's list (I'm nosey) so I thought it'd be fun to create the same type of entry here, but about Aiden, from his point of view, through words, pictures, and videos!
1. I have a very busy week ahead of me. On Sunday I'm getting baptized, on Monday is another spotlight day (you'll see below), then Wednesday, the biggest day of them all, I'm having surgery to get my cochlear implants!
2. I don't like pumpkin pie.(This video is not captioned, since it is mainly just my family laughing at me).
3. My new favorite foods are blueberry muffins, grapes and bananas. I'm truly getting sick of the baby mush ... bring on the real stuff ... even if I only have 2 1/2 teeth!
4. I hate my hearing aids. I don't know why my mom constantly puts them back in when she should know by now, I'm just going to pull them right back out. She thinks those silly looking hats work, but they don't. She will not win.
5. I am a very determined little boy and always strive to get what I want. My fave is the cords to the computer. Note to mom: Your barricades do not work.
6. I wake up every morning between 4 and 5am so mom will get me a bottle and put me in bed with her. I love snuggling! The best part though is when I wake up, I give her a few good headbutts, my dad a tug at his nose, then laugh.
7. I don't crawl. In fact, they say I'm behind in my gross motor skills, but I pull myself up onto anything and can do some fast cruising around!
8. Raspberries rock. I blow them all the time, especially when my mom sticks a whole spoonful of food in my mouth! That really gets her. I think it's funny.
9. I only have two and a half teeth, two on the bottom, and one that's coming in at the top ... all random and out of place ... I'll be able to pop a good beer bottle with that one!
10. I LOVE LIGHTS! I love them so much "light" was one of my first signs. If the lights off, I look at my mom or dad and sign light so they'll turn it on.
11. I also sign milk, more, and eat.
12. I love to torment my sister, especially when she's on the computer, but she still loves me!
13. I also love to torment our two cats!. My dad nearly threw them both out after one nearly scratched my eye out. I tried to pull him off the window ledge, by his tail. 14. With my hearing aids, I usually respond to my mommy if she's talking right by me. Somedays I just completely ignore her though ... by choice. Here's a day I was listening very well and my mom was so excited!
15. I love the camera, but not more than lights ... oh wait ... I love the light on the camera so I always stop and give mom a great smile!
16. My brother is teaching me to play video games already. One day, when I get to hear music, I'm going to jam to some Foo Fighters and AC/DC just like him.
17. If my mom leaves the room, I freak, just to see how fast she'll run back in!
18. I'm starting to throw temper tantrums. I like to get my way (see #5). When my mom removes me from the places I should not be (see #5), I swing my hand at her face or pull on her hair. Then she tells/signs to me "no", and I blow a big ol' raspberry at her (see #8).
19. Despite my tantrums, I am really sweet & innocent ... c'mon ... is this a face that you could be mad at?!? 20. I'm spoiled. What can I say? I really do no wrong (ignore #18 & check out #19 again).
21. Have you seen my baby blues? One day they're gonna break hearts. 22. I love to play peek-a-boo, wave bye-bye, clap my hands, and shake my head no. Oh yeah, and I have great farts, they make me laugh. All this while blowing raspberries!
23. After my surgery, I have to wait a month to "turn on" my new ears. My first one will be turned on 8 days before my first birthday. I'll have auditory-verbal therapy at least two times a week (not including 'mom therapy' everyday) to teach me what sounds are and put meaning to them. I just may hear when they sing happy birthday to me!
24. I'm going to do great with my implants, just like Pamela Anderson has with hers, but in a much different kinda way! Just like my friend Trevor said, I'm going to be a hero one day! Thanks so much Trevor for dedicating this book to me! You rock!
25. ... AND THE BIG NEWS ... I'm going to be a SUPERSTAR! My surgeon asked my mommy and daddy if I could be featured in National Geographic!!! They're doing a story on cochlear implants, found my surgeon, and asked him if they could feature one of his patients, and he chose me! They're coming to my house before my surgery to talk to mom and dad and capture my life pre-implants, then they'll take pictures during my surgery, and then at my activation! We're all very excited to help educate the public throughout the world on cochlear implants and just how amazing they are! Mom says I'll always be her superstar, no matter what!
Here he is playing with a balloon his TOD brought by. Look at those ears!
Just another ear shot and a great messy face!
Ears going back to normal .... thank God!
10. I LOVE LIGHTS! I love them so much "light" was one of my first signs. If the lights off, I look at my mom or dad and sign light so they'll turn it on.
13. I also love to torment our two cats!. My dad nearly threw them both out after one nearly scratched my eye out. I tried to pull him off the window ledge, by his tail.
