Two Great Articles on Hearing Aids

Even though it's a distant memory of having to put hearing aids on Aiden, I have been in contact with a lot of families recently who are just starting their journey and currently in a world of "FEEDBACK". Leah, a dear friend of mine whose sweet little Nolan has hearing loss and wears bilateral hearing aids, is an amazing advocate and knowledge bank on hearing loss (and many other avenues). She is also the author of SAY WHAT?.

Unfortunately, (and sadly) a lot of insurance companies do not cover hearing aids. This first article discusses different programs families can look into to help pay for them plus a lot of other great information. So even if your child already has hearing aids, still check it out.

http://leahlefler.hubpages.com/hub/Programs-to-Help-Families-Pay-for-a-Childs-Hearing-Aid

Her next article is a great video tutorial where Leah does an amazing job discussing different ways you can test your child's hearing aids to make sure they are working properly through the Ling 6 sound test. THIS is another great page talking about the Ling 6.

http://leahlefler.hubpages.com/video/How-to-Put-in-a-Childs-Hearing-Aid

Wow. Did that video bring me back. Otoease, feedback, checking the ling 6 with a hearing aid stethoscope. And for those of you who are on a hearing aid trial and know your child will most likely be getting cochlear implants, it is still so important to go through all this. One, you never know what your child is hearing, and two, even if your child doesn't hear the lings, it prepares you and your child for the daily listening checks and starts introducing them to the Ling 6. This is the same listening check we use every single day to make sure Aiden is hearing what he is supposed to through his cochlear implants. If he has trouble repeating one or more Lings back, it's a good indicator he may need a new map/program.

another great video

Excellent video recap of 10 year old girl's story of having her CI activated. I LOVE these stories for many reasons, but it's always so touching to hear what it's like from someone older since Aiden could not tell us what the whole experience was like going from silence to sound.

http://www.wfaa.com/news/Girls-video-diary-chronicles-her-struggle-to-hear-153311365.html

She heard herself breathing for the first time ... something that seems so simple ...

I challenge you to stop today. Stop and listen. Take in all the sounds around you that so many never get to hear. What are some of your favorite sounds?

Regional Infant Hearing Program

and checkout who's on the cover of our RIHP's newest brochure!

This was taken in the Spring at one of the hearing loss toddler playgroups we attend through the program. There's actually a tear in his eye as this is when he was Mr. Cling, but now he can't get in the room fast enough!

The Ohio Department of Health funds several Regional Infant Hearing Programs (RIHP) throughout the state of Ohio. These services provide families of babies and toddlers identified with a permanent hearing loss free of charge and are in addition to any services we receive through our county. The Columbus program provides services to families in nine surrounding counties. It is through this program which we are offered a parent advisor (our wonderful Ms. Natalie whom we see once a month for therapy ... only once a month because of the areas growing clientele of parents with babies/toddlers identified with hearing loss) and attend a bi-weekly parent support/toddler group. They also offer audiological support from a licensed Educational Audiologist and are an excellent provider of resources and information.

We are very lucky to live in a state/county which provides such wonderful services for Aiden, not just as a toddler, but also once he turns three and begins preschool.

Good with My Bad

I am completely worn out. I have been going nonstop since Aiden started school. It doesn't help that last week we had at least one commitment every day. School, audiology, therapy, ECI, school. Nonstop.every.day.of.the.week.

This trip to Aiden's school twice a week is hard. We leave before 7am every morning and are still late ... and class doesn't start until 8:30/8:45! The traffic is absolutely insane. The ride home is fine, it's getting there that's the problem and I'm starting to wonder if I really made the right decision to start him at such an early age.

I have to get Aiden up out of bed by 6:15am and throw him in the car for our two hour trek into D.C. I promise you, the other day it took me 25 minutes to travel from exit 28A to exit 28B. No joke. I truly don't mind the drive, but what I hate is the fact that during this time, Aiden's CIs become breakfast so he has no sound for the whole trip. Top that off with dropoff crying fits (ok, they don't last long, but it still breaks my heart) and I feel like a terrible mother.

I can't help but think:

- I started him too early.
- I'm losing good hearing/language opportunities during our travel time.
- He's crying when I drop him off, and
- Completely worn out when I pick him up.
- He's completely off schedule right now.
- How is he going to stay an extra hour once a week for private one on one therapy?
- Then he has AVT the one day in between his school days ... when does my baby get a break?
- He's reverted back to wanting the bottle even more, and I give in. It's the guilt.

These are all things that have been going through my mind nonstop and it makes me want to take my baby and stop it all.

Then I remember:

- This is such an amazing opportunity - he's getting three and half hours of therapy in a language enriched environment.

- He's playing, having fun, learning, learning, learning ...

- ... all at a prime learning to listen stage in his life.

- This is one of the best oral school's for deaf that works hand in hand with his CI center/team.

- He's in a classroom with 6 hearing peers and one other CI peer.

- He gets excited when he see pictures of his teachers and classmates.

- I am truly enjoying the downtime with Ben's mom and getting to talk with other CI moms who just get it.

The time to enrich his mind is now.

- He's starting to say the animal sound when he sees a specific animal.

- He plays with the caterpillar and makes it eat the fruits as he makes the munching noise each time.

- He's starting to imitate more

- He's becoming more observant and vocal

- His teachers are documenting his day and in the last three visits alone, have picked up on things I haven't, such as:

• Aiden says bah (ball)!
• When they ring the bell for circle time or clean up time, he not only hears it, but follows his classmates and participates in whatever they should be doing
• Sought out the teacher when his CI fell off! HELLO! He's NEVER done this at home ... until today, he SAID to me "on, on, on" and when I turned around, noticed his CI was off!
• Requested "uh, uh, uh" (up, up, up) when he wanted to wash his hands
• Is using the classroom climber unassisted ... remember, he's the only one in his class who is not walking, he's going to want to keep up sooner or later!

The hard work is now. The pay off is slow ... but it's definitely showing it's presence.

He is adjusting ... it's harder on me than it is on him ... emotionally and physically. Really.

When Aiden was born, I wasn't ready to hear he was deaf. I tried to ignore it. Not believe it, that there was something that would just "fix" it and he'd be fine.

But there wasn't a cure. So we grieved and forged forward.

Now Aiden's a full fledged toddler with cochlear implants. I'm not ready for this hectic schedule and feel guilty for how busy we are. But I can't ignore it. He's in a prime learning stage. I wish everyday that there was an easy fix for him. I wish everyday things were easier for him. I wish everyday he didn't have to work so hard to learn to listen and speak.

But he does. So we forge forward.

I wish I was as strong as he is.

He truly is one amazing little boy.

Cochlear Implants 101

"Can you tell he's hearing yet?"

"Is he turning to sounds?"

"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 aids amplify 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 video explaining 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.

Part of the Waiting Game

Last I wrote, Aiden was diagnosed with EVAS/LVAS (enlarged/large vestibular aqueduct syndrome), which I still don't completely understand .. in fact, that whole appt. went so fast and so has all the time since then. I've joined an LVAS group and have asked many questions to professionals I have already built relationships with, all of whom told me that yes, my baby could have failed his newborn screening. Yet it still doesn't make sense to me, since they say this is not congenital and that hearing loss in LVAS kids is typically not detected until well after birth.

So here's some of what I've learned:

• The vestibular aqueduct is a narrow bony canal that runs through the skull, connecting the inner ear (by the cochlea) to inside the skull. In short, the tube within this canal is filled with fluid which typically flows away from the organs of the inner ear. With LVAS, the fluid flows back into the hearing and balance organs, causing balance and hearing problems.
• This is a syndrome ... it is genetic, it is hereditary. They have traced the gene to be responsible for LVAS, but still have a lot of questions about the syndrome.
• LVAS occurs sometime after birth and is the result of abnormal postnatal or early childhood development (this is why I question why Aiden failed his newborn hearing screen? Could he truly fail it that fast? Most kids with LVAS are not diagnosed until after 12 months.)
• People who have LVAS are predisposed to the development of hearing loss (wouldn't this mean it's congenital then that at some point in their life they would have hearing loss??)
• It can be associated with Mondini (where the cochlea only develops 1 1/2 turns instead of the normal 2 1/2 turns - Aiden has a full 2 1/2 turns). They do say too though that hearing loss is greater if you have LVAS and do not have any other cochlear deformity.
• It can also be associated with Pendred syndrome - (We will need to get him tested for this although he shows no other signs of this syndrome).
• If you have LVAS without any other cochlear deformities, the hearing loss can be subject to sudden drops in hearing ... which may explain why Aiden failed his ABRs - was this a point where his hearing was at a sudden drop?
• The hearing loss can be fluctuating. It can be sudden by the bump of a head, it can continue to fluctuate over time, or continue to be progressive over time.

So where are we at? Aiden is still a candidate for cochlear implants. Our surgeon tells us that LVAS kids are typically prime candidates for cochlear implants depending on the severity of their hearing loss. Aiden's testing seems to just get better and better, with his last aided testing at 45 to 50 db, across all frequencies. THIS IS AMAZING, BUT ...

... is this his highest he will go?

...will his hearing fluctuate more and to a point he reaches even higher db's or continue to decline?

... is this the best we're going to get?

We know we can't turn up his hearing aids any more because there's a point that sounds become distorted. Without his aids Aiden is hearing about 80 db. So his aids work very well for him. If we turned them up any more though, he'd actually lose the "good" sounds. He's at his peak.

So, we're in a holding pen right now. We're playing the waiting game. We have everything done as far as CI candidacy goes and it's all a go. Except the most important part ... the audiogram. With his most recent audiogram, 5 years ago, he wouldn't be a CI candidate. We're on the borderline. Will it get better? Will it stay the same? Will it get worse? Do we just take the next one and run with it? Do we wait even longer for more consistent results? WHAT DO WE DO NEXT?!?

Aiden's daddy and I still feel very strongly about implanting Aiden, on at least one side (although we've been prepared for bilaterals for some time now), and before he is 12 months old. Even if his aided tests went up 5 to 10 db, we're still dealing with a fluctuating hearing loss, we're still dealing with the constant wondering of whether Aiden is receiving all sounds of speech, and we're still dealing with the fact that he could completely lose all of his hearing at any given moment. We want him to have access to ALL speech sounds and learn these sounds when they are easiest accessible to him ... in his prime learning years ... NOW.

So ... next steps include:

• Continue to work daily with the Ling 6 Sounds (ahhhh, oooo, mmm, eeeee, shhh, ssss), which by the way, he responds to all of them in therapy except the "ssss" sound.
• We hope that by working with the Ling 6 sounds on a daily basis will truly condition him to listening for these sounds and prepare him for the next soundbooth, which is on January 12th. I'll post a video soon of us practicing these sounds.
• After the soundbooth, we will meet with the surgeon again to verify candidacy and decide on a surgery date, which, if all goes well, will be in February (Aiden will be 11 months)

That's where we're at with cochlear implants. It's the waiting that's the hardest part. Before the whole LVAS diagnosis (and his last soundbooth), we were looking at bilateral implants by January. Now we're trying to figure out what's going to happen next. I have faith though and I feel a peace about me that everything is going to work out the way it is supposed to. I still anxiously await my baby's hearing birthday, but I know, it's right around the corner. Until then we continue with what we have to do to help our baby hear.

I found an AVT (auditory-verbal therapist) that I really like, so we continue to see her once a week. She used to work for Johns Hopkins (plus, trained under one of my AVTs from Texas!)then started her own AVT business, yet still works closely with our whole team.

Maryland ECI comes out one time per week. A couple weeks ago they came out and evaluated Aiden for his motor skills and language skills. I am happy to announce that Aiden was at 7 to 8 months for both receptive and expressive language!!! This is phenomenal! He's on track with fine motor skills, but behind with gross motor skills (which he tested at 5 months). He is still not sitting completely by himself. He is on his way, yet still has that whole balance issue. It will come though. He definitely gets around - by rolling. ECI will come out at least once a week for both speech and PT.

So, we're underway, trying not to watch the clock (or calendar) and just enjoying this holiday season.

Aiden Hears His Daddy

I remember when teaching Aiden's older siblings to talk, wave bye-bye, dance, etc., we would show them time and time again and before you knew it, they were saying "da-da" or "ba-ba" or bopping their head like we did to the music. All of this happened before they were a year old, or shortly after, and as all parents, it melted our hearts. We expected this to happen and it did.

With a deaf or hard of hearing baby it takes much, much, much more work and consistent repetition of EVERYTHING you do. Consistent repetition just hoping, praying, waiting for the day that they imitate you and associate the sound you make over and over and over again with the experience. EVERY moment becomes a teachable one and repetition is key.

For example, everytime I pick Aiden up, I say to him, "Up, up, up" pitching my voice a little higher with each "up". Everytime I feed Aiden, I use the sounds mmmmm, and ahhhhh, and yum, yum, yum. When I hear daddy call "Aaaaiden", I point to my ear and say, "I hear daddy." and when I am about to talk to Aiden about a sound or event, I point to my ear and say, "Aiden, listen".

We have to teach him to listen. We have to teach him what sound is, what each sound means. With his hearing aids and a lot of hard work, Aiden has done an amazing job at learning to listen. This does not mean his hearing is getting "better", it means he is becoming aware of sound and starting to develop sound-object awareness. He is still a cochlear implant candidate and we are still working hard to get there. This shows us though, that as I've said over and over again, Aiden loves to listen.

A part of our day that is consistent, and that Aiden's daddy and I have turned into a teachable moment, is when Aiden's daddy comes home for lunch and home from work. We do the same thing, everyday. So as I hear his daddy unlocking the door, I prepare Aiden to listen.

And here is Aiden hearing his daddy. (Make sure you turn off the music on the right first).

Better Results in the Soundbooth ... AGAIN

I know this should be so exciting to me, and believe me, it is. We had a full day at Johns Hopkins today, starting with our psychological and ending with what I thought was just going to be a choose your implant device discussion. Well, they started with another sound booth ... which I'm always glad to walk into, but then threw our decision for "simultaneous bilateral implants before 12 months" off a bit.

Here is his audiogram and then next to that the speech banana, which I explained when Aiden got his first soundbooth test. At this time he was just over three months old and showed responses with his hearing aids at 75db and I was like my daughter in a candy store. I couldn't contain myself that my baby heard something! That was 5 months ago. So to think now that he is hearing sounds at 45 to 50 db and definitely hears some of what his mommy says to him is just UNBELIEVABLE! From 75db at 3 months to 45 db at 7 months. Actually, from being told he "probably wouldn't get any benefit from hearing aids" to learning to listen like no other!

UN ... FREAKIN' ... BELIEVABLE!

NOTE TO NEW MOMS ... NEVER GIVE UP!

Okay ... to explain his audiogram for family & friends ... the left side shows decibels (how loud something is ... a whisper is at around 20 db and normal conversation levels around 45 to 50 db). The bottom axis shows the frequency level ... the more energy it takes to make a sound, the higher the frequency ... with deaf/hard-of-hearing people it is typically harder to hear high frequency sounds than lower).

Okay ... so look at Aiden's audiogram, the "S"s show his "Binaural" responses - that is with both hearing aids on - he was hearing between 45db and 50 db from frequencies between 500 to 4,000. This includes normal conversational levels.

Then, the O's and X's show his responses without hearing aids ... O's show his right ear responses and the X's show his left ear responses ... which, as you can see, both ears are pretty much the same from 65-70 db at lower frequencies and then drops to 75 to 80db at the higher frequencies. So without his aids, he could possible hear a dog barking or lawn mover.

All of these responses are to sounds though that he would probably hear only about 50 percent of the time. Think about it, as normal hearing people, we can make out what we don't hear based on everything we do hear ... for hard of hearing/deaf people it is so much harder to do this ... it's harder to "fill in those blanks".

Now look at the speech banana next to his audiogram. This shows what a person can hear at different db's and frequencies. So you can see that even with Aiden hearing with aids at 45 to 50db, he's still missing out on hearing (and therefore speaking and responding to) the important sounds of speech, such as the /p/, /k/, /h/, /g/, /th/, /s/, /f/, /z/, /b/, /d/, etc.

So, is he hearing somethings? Definitely. Is he hearing all he needs to acquire ALL sounds of speech? NO. Is he hearing enough to only need one implant or maybe, just possibly maybe, only hearing aids ... still checking this out. My gut still wants at least one cochlear implant. My big question now truly is will he be just as successful with one than he would be with two?

Honestly, truly, I wish he was just deaf OR could hear enough to know he just needed hearing aids. Seriously, wouldn't it just make it all that much easier?!? Don't get me wrong, I'm on cloud nine that my binky boy is hearing as well as he is. He's moved up to the "moderate to severe" hearing loss category and is on his way to being successful. He wants to listen. He loves to hear. He continues to use new sounds every week (we were so excited to hear /r/, /m/, and /b/ from his loud mouth this week!) He will succeed. He already shows it.

He Loves To Listen!

Are we doing the right thing???? This has been a huge question in our minds ... recently. There was no doubt in the very beginning when we were told Aiden would probably not have any response with his hearing aids. Since then, we have seen Aiden respond so well with his hearing aids. But, are they good enough? Will they give him what he needs to hear and acquire the sounds of speech needed to be successful in the hearing/speaking world we so want him to be a part of? These questions flood our minds every day. Every day we wonder are we doing the right thing for our baby.

Before we left Texas, they turned up his aids ... he's getting bigger and therefore can take on more. He responded ... he definitely responded. He's been responding and today in the sound booth he proved it ... he loves to hear. He didn't only respond to spoken language, but to what I call the boring "static/monotone" sounds. He responded to the "mmmm's", to the "ahhhhh's", and even to the "shhhh's". He showed responses not only through the infamous "binky" tests, but TURNED HIS HEAD TO ALL THE SOUNDS! Continuous responses at 50 to 60 db. Flat line ... all the way across all frequencies. His audiogram shows pretty much a flat line between 50-60db. My baby is definitely hearing something and all I could do was smile and cry.

All the countless hours of ...
...him pulling his hearing aids out and us putting them back in,

...nonstop talk and singing and narration,

...of making sure we talk to him within his "hearing bubble",

...giving him every bit of auditory information we can.

All the countless hours we just want to STOP talking, but keep on going ... he is responding ... and every minute of our time has been worth it. The soundbooth confirms what we see at home, but always question, was that a response?!? Aiden wants to hear ... his auditory nerve has such integrity, and we are doing something right!

So we've questioned ...

Does he still need cochlear implants?

Will hearing aids be enough?

Will his hearing keep getting better or will it get worse?

Can he learn to communicate in a hearing/speaking world that we want him to be a part of with just his hearing aids?

Should we implant one ear or two?

How could he have no response at 120 db unaided six months ago, yet test so much higher with hearing aids?

Aiden loves to hear ... his brain is getting ready for listening, and he loves it.

We know that Aiden will not receive all the sounds of speech with just his hearing aids. Could he learn to speak with just his aids? Probably. Will it be at the same level he would get from implants? Not at all. We don't want him to struggle any more than he has to already. Our goal is for him to be mainstreamed by kinder. or first grade and feel the least bit of difference possible from his peers. Either way, Aiden will always have to wear devices on his ears, whether it is hearing aids or cochlear implants. At his hearing levels, we know that the implant will give him opportunities to so many more sounds, at an age that is imperative to development for spoken language. We know in our hearts what the right answer is.

We have gone round and round with questions in our mind if we are doing the right thing for Aiden. This is a choice we are making for him, yet a choice I believe will benefit him for the rest of his life. We are empowering him with the fullest potential to hear and speak. We feel in our hearts that this is the route to take. Aiden wants to listen ... he hears and speaks to us everyday! He shows us he wants more. He shows us he is ready to take it all in. That he is ready.

I can't keep dwelling on the question to implant or not. I've questioned myself, I've done my research, asked my million and one mom questions to the professionals, and have done my own "mommy diagnosis" with my son. We're moving forward ... and there's no doubt, he's going to continue to amaze us each step of the way!

FM System on the Way!

I received more wonderful news today! Aiden's audiologist called to tell me we are getting an FM system!!! The one we're getting has the new Dynamic FM platform, which from my understanding after a great seminar I just attended, allows for optimal speech recognition in places with a lot of background noise, yet will automatically mute itself if speech is not present in the FM mic. This saves the FM user from hearing "air noise" and static, yet still allows for the user to hear the world around them. As I sat there in the seminar last Thursday, I was in awe learning about these, not even thinking I'd be told, in less than a week, that Aiden would be getting one!

What is an FM system (aka - auditory trainers)? All in all, they consist of a transmitter (that I would wear) and a receiver (that attaches to the hearing aid or CI). This allows for my voice to be directly transmitted to Aiden's hearing aids. Go here and here to read a quick overview. For more detailed info., search FM systems on the ASHA website to view studies, publications, and abstracts on them. There are also different types. This mom did a great job at explaining the three types. We are getting a personal FM system for Aiden, since it will be used at home or when we're out and about in places with a lot of noise.

Why an FM system? People with normal hearing can usually understand speech when there is background noise. Background noise, to people with a hearing loss, makes trying to hear that much harder. Hearing aids amplify all sounds. And in our household, with Aiden's older brother & sister (who both LOVE their music, have friends who "live" at our house, and are VERY loud in everything they do), background noise is a huge thing. But background noise, at home, is so much more than this too. It can be the washer or dryer running, the dishwasher, the air conditioner kicking on, the humming of any appliance, the water running as someone washes their hands, the tv from upstairs--noises, as a hearing person, I never was too aware of, until Aiden. Background noise is terrible too at places like a grocery store, the mall, anywhere there is a high traffic volume.

What an FM system will do is help drown out these "unwanted" noises and provide optimal listening capabilities, which will then in turn allow for optimal speech recognition. Some of these noises are great, as we do our listening walks throughout the house, but when we're speaking to Aiden they're not. (The FM system will work with his cochlear implants as well. Even though CIs have the capability of drowning out background noise, an FM system works to drown it out even more).

Distance is a major obstacle with hearing loss too. Right now, we are supposed to talk to Aiden within his "hearing bubble", which is six inches from his ear. Sorry, but I cannot have Aiden 6 inches from me at all of his waking hours ... I've tried, it doesn't work! An FM system will transmit whatever I say, from wherever I'm at, directly to his hearing aid and then on to stimulate that auditory part of his brain! So now, while I'm trying to get laundry folded, I can still sing "Wheels on the Bus", with him in the adjoining room, and hearing me. Ugh ... now that I say that out loud, I guess I'll really need to watch what I'm saying when I'm using the FM ... especially when I'm just in one of those moods! : )

How can you get one for at home use for your child?

• Start, by talking to your audiologist. They should have some ideas of where to start.
• Talk to Early Childhood Intervention/Parent Infant Advisor. Some states have an ECI program that automatically provides one to families, for home use, that have a child with a hearing loss. This is state by state though. I'd be interested to hear from you if your state does or does not provide this. I think they all should. Texas does not.
• School districts provide them for the classrooms and some allow you to take them home. From what I've read, a lot of districts do not want you taking them home. Again, why wouldn't we provide our children with the best possible resources at all times of the day?
• Visit your local Rotary Clubs, Elks Club, Masons Group, Lions Club etc. These clubs fund raise all the time to help children in need. There is a scholarship application you have to fill out (your audiologist should be able to help you fill this out).

We thank our wonderful audiologist for the constant encouragement to get the FM system, the education on the benefits of one (I never realized what they were all about), and for all of her follow up to help this happen! You are wonderful!

For Hearing, Not Teething!

Aiden has really been taking out his hearing aids EVERY CHANCE HE GETS lately. I put them in, he takes them out. The other day I counted 20 times of in and out, all within thirty minutes! I was going to try and count all day, but lost hope. I thought with him wearing them since he was 10 weeks, we wouldn't have a problem with this. Wrong. The other day, I heard a bunch of buzzing (which is so normal in our lives), knowing he had them out. Sure enough. I think he's mistaking them for his teethers. He's like Speedy Gonzales ... one and then the other ... I can't get there to stop him fast enough! And one inevitably makes it into his mouth and then he looks at me like, "Don't you dare touch it." (I found the other one from this pic on the floor!)So our solution ... pilot caps! After a few days of constantly in & out, I finally ordered some and they were here in less than a week. So for now, we're saved! Only problem, I measured his head a bit too small and he STILL can get them out ... just not as fast as mom can get over there to fix it though!(Oh, and that teether thingy in the picture is GREAT too! I think you get them at Target. We stick ice cubes in there for his teething. When they get older you can stick fruit in there. The covering is mesh so just juices come out. Aiden goes crazy with it!)

Back From the Beach ...

and back to everyday life! Including Aiden NOT NAPPING! Aiden napped so well on vacation ... maybe it was the breeze from the ocean, maybe it was the "we're not doing anything but relaxing" atmosphere, maybe he was just plum worn out from not napping at home! But he napped,

and napped ....

and napped ....Now, when we first got there Aiden got his first cold. Probably because right before we left, I took the snot syringe thingy out of his diaper bag thinking we wouldn't need it. Wrong answer. He ran a small fever the first couple of days and was just stuffy nosed after that and still his happy little self (see his beach pics on the side bar).

This was our first time to Daytona beach. It was nice, but we liked the beaches & atmosphere in Destin much better. The weather was great! Low 90's, but humid and always a good breeze ... a lot better than the hot Texas heat! We spent our days at the pool or on the beach (and from the advice of our wonderful audi, left the hearing aids off and in the room). One day we walked over to the water park, which was right across the street (which, Aiden slept the whole time at!). After the past couple of years we've had, it was just so nice to get away and forget it all!

We came back to 107 degree weather (gotta love Texas) and a broken air conditioner (upstairs one)! Thank goodness they both weren't out and we found one company to come out and fix it the next day.

So we're back into the swing of things, school starts in 2 weeks (woo hoo!) and we'll continue on with Aiden's appts. He has his weekly AVT sessions, ECI (PT & his TOD - Teacher of the Deaf) will be coming out, another audi. appt on the 22nd, and then on Sept. 5th, we have his MRI! All this said with a smile on my face! Here we go!

60db Baby!

Oops ... I don't know what happened, but I totally deleted the first post with this name by accident! AHHHH! It was the one time I had peace & quiet in the house with everyone asleep and time to catch up on Aiden's journey. Now we'll see if I can get it out again before my crew is up & going!

So much has happened over the last couple of weeks ... the biggest one being MY BABY IS HEARING US! HE IS SHOWING SOME GOOD RESPONSES OVER AND OVER! Just typing that brings tears to my eyes. I mean just three months ago I was being told that he was profoundly deaf (no response at 110db) and that hearing aids probably would not do anything for him. BUT THEY ARE!

We did behavior testing last week and with spoken language he tested at 60db with his aids!! (this is in the moderate-severe loss range and does not include the sounds of speech, so he is still on the path to cochlear implants). Aiden's daddy, our wonderful audiologist, and I all saw the binky business response and one time he even turned toward the speaker!!! Hello tears ...

I asked our audiologist HOW he could go from testing at a 75db just a month ago and now be testing at 60db. It didn't make sense to me. She said that, 1. he's becoming a better test taker, and 2. his aids are working for him so he's becoming more aware of sound and therefore showing more responses to them. I still was a little iffy ... I'm a very black/white person, show me HOW you can prove he's hearing at this level by just watching him; but as his mommy, I saw it too, my baby responded and I knew it! Aiden has been showing us many responses this past week and here's a few examples.

On Sunday, Aiden's dad called me as I was on my way to a baby shower. Him and Aiden were practicing different learn to listen sounds, when Aiden once again, repeated the ahhh sound to him! He was so excited he called me to let me listen ... sure enough, Mike would "ahhhhh" and Aiden would "ahhhh"! My heart melted! What a video moment - next time!

Yesterday morning I got off to the side of him and started saying the ling sounds (oo, ee, ah, ss, sh, mm) and Aiden would get real still and sorta dart his eyes around like "where is that coming from", then continue on. Then I'd do another sound, he'd get still again, and after another "ah" he actually turned, looked at me, and gave me a huge smile! I wonder if he just sensed me, smelled my scent, or maybe my baby just heard his mommy's voice and turned to see her! More tears ...

Go here for a good explanation of the Ling sounds and where these sounds fall on the speech banana. You can see on this chart that the "ah" sound falls closest to 60db and this is why he probably responds most to this. What surprises me though is that he has responded a lot today to my louder "shh" sounds (static sounding). Every time I said that sound today he would just stop and get this "WTF" look on his face!

We play pat-a-cake a lot and Aiden LOVES this game! In our recent therapy session with Miss Helen, she taught us to create "powerful moments". These are moments where a baby will begin to realize that something fun is going to come next. So during pat-a-cake the past few days, I've done a lot of pausing between lines. During this silence, Aiden gets so excited and belts out some pretty exciting screams "hurry up mom ... throw it in the pan!" I wonder if he can hear the inflections (is that the right word?) in my voice and knows there is more of it to come!

Oh yeah, and we had new ear molds made the other day (again). This time we got blue/white swirls (which I didn't know we could do) for our upcoming vacation to the beach! He barely even flinched this time. He's becoming a little pro at sitting nicely while the put all that cold goop in his ear ...

Aiden is going to be okay. Not only okay ... but GREAT! He is such a happy child who makes me smile all day long! We are so blessed to have him! This journey is absolutely amazing! Aiden is absolutely amazing and I would not change one thing about him!

Let the Games Begin

Aiden has found his hearing aids! He is reaching up to his ear, grabbing them out, and using them as teethers. Expensive teethers. Mixed emotions about this all though. I am ...

Excited - Because he either realizes something is on his ears and wants to check them out, OR he's discovered his ears and realizes there is something he can grab off of them and of course where does it go? Right to the mouth!

Nervous - These aren't cheap devices and I don't think they're water proof! Aiden's been drooling like crazy ... just waiting for a tooth to pop up ... but these aren't my ideal teethers! Plus, I know from reading other stories, it'll become a game of "In the Ears, Out of the Ears", and I can only hope I will win ... I'm predicting not.

While watching all of this, Aiden's daddy was practicing the airplane noise with him (aaaaaahhh-aaaaah-aaahhh-aaaaah) and flying around the toy airplane, when Aiden looked right at him and out came "aaaaaahhh", out of nowhere! We both just laughed! Hey ... you never know what he heard, and we choose to believe he heard his daddy talking to him and he wanted to particiapte in the conversation too!

One more step ... one more day!

Laughter is Key

Today, as I listened to Kailyn read baby einstein, Touch and Feel Farm Animals to Aiden, I laughed out loud as she made the horse sounds to him. As I laughed, Aiden turned his head, looked at me, and smiled (I was sitting sorta behind him to the left)! I've never seen him turn toward a noise, just reactions as we're face to face talking! I laughed one of those teary eyed laughs and responded back with a, "you heard mommy laugh!" and a huge kiss on the cheek! PROGRESS with hearing aids right!!!

Over the past couple of days Aiden is also starting to giggle, not quite those all out baby belly laughs, but tiny giggles. Before, he would just smile real big and I'd keep waiting for any sound to come out; I was getting scared nothing ever would. But they're here and I'm sure those big belly laughs are right around the corner! I can't wait!
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On another note, Aiden is three months old today. I took the big step and moved all of his things upstairs to his room ... I have to get him out of the bassinet in our room and into his crib and it's a hard transition (more for me than him I'm sure). I've done good so far though, he's on his second nap in his crib (aren't you proud of me mom)! We'll see if he makes it up there tonight!

We're All in This Together

Aiden is amazing! We have really seen some great reactions from him this past weekend! We've had his hearing aids since May 27th, but the first week seemed so overwhelming and I just wasn't seeing any reactions from him; I refused to say he didn't hear us, yet felt an emptiness when he showed no reactions to my voice. Now, when I put on his hearing aids, his face lights up. He fusses at first while I get them on, but once they're on, he's all smiles! He's really been participating in some great vocal play too, cooing more and responding back to our voices! Kailyn loves to show everyone how he smiles and kicks when she tells him "I LOOOOOVVVVE YOUUUUU!" He definitely knows his sister!

I went out this weekend and bought a bunch of baby books and created the "Basket of Books" and set it in the living room. Everyone has to read him one book a day! Aiden loves them all, especially the ones with the baby faces! I love to see Kailyn & Ryan read to him. Ryan is very interactive making sure Aiden's looking at the pictures or takes his hand to feel the different textures of animals! I've even heard Mike talking to Aiden the "nutso" way I do, emphasizing our vowels and repeating every little noise Aiden does (you gotta admit, it sounds a bit crazy constantly repeating every noise a baby makes or narrating every movement you make, but after about a week, it's become normal household chit-chat.) It's great to see the whole family getting involved to help Aiden! We all know our goal and we're all getting there together!

Ooooo's and Aaaaaa's

We had therapy today. First one since summer break started. Kailyn had to go with me, which shouldn't be a big deal, but you have to know Kailyn. I love her to death, but she is quite the drama queen and loves every ounce of attention she can get and I was a bit worried about having to keep her under control while learning about Aiden's therapy. Most of the time, she sat and colored as she read (out loud of course) until she was invited to come join in and help! Best thing the therapist did, because now she was involved and felt important! She loved it!

Aiden was a ham as well! He really responded today! We were taught about his "hearing bubble" which is about 6 inches from his ear - this is the best range to keep within his ear when talking to him. Kailyn was taught how to speak to Aiden and stay within his hearing bubble and everytime Kailyn said"I LOVE YOU", Aiden would get a huge smile on his face! When he had his binky, he'd stop sucking on it ... our therapist said all of which are great signs he's responding to our voices!

So here's our homework for the week:
*Speak to him within his hearing bubble with good emphasis on our vowels. Lots of aaaaa's, eeee's, oooo's, and uuuu's!
*Everyone in the family will read one book a day to him (a baby book with lots of emphasis on vowels). I like this homework because it gets all of us involved.
*Pick a song of the week and really sing it throughout the week changing it up for each activity - we're working on Old McDonald this week - it's amazing how Old McDonald can change a diaper, give a bath, and burp a baby!
*Continue with our name game and listening walks.

Ryan says I'm a nut the way I talk to Aiden, but that's okay ... better to start practicing at home for the real world. I am sure there will be a lot of people out there who look at me as a bit cooky as I talk to Aiden in public, but it's for my baby and I'll do whatever it takes!

Out in Public with the Hearing Aids

We took our first trip out in public since Aiden got his hearing aids. It was for Kailyn's field day at school, she's in the first grade. I thought what a great place for him to get some kind of stimulation with all of the kid's voices and laughter! It was a lot of fun and Kailyn had a blast! For those of you who don't know Kailyn, she has a very strong personality who has no problem saying what she needs to, doesn't have a shy bone in her body, and is a little comedian! When the GIRLS beat the BOYS at tug-of-war, Kailyn yelled out "oh yeah, oh yeah, girl's rule, girl's rule, boy's stink!" as she danced around shaking her butt! We need to work on the being a good "winner" part still!

Kailyn is so proud of her brother so everyone in her class knows Aiden. A lot of the kids would come over to check him out and as 7 year olds, ask "what's that thing in his ear?" to which I replied "When he was born his ears didn't work and he can't hear, so these help fix that and help him hear, they're called hearing aids." Then there were all kinds of responses, "hmmm", "they're cute", "cool", and my favorite, "so they're kinda like band aids?" How cute are kids! One kid looked right at me and said "Someone told me he was deaf" and I just truthfully responded, "Yes he is, but one day soon, he will hear!"

After Kailyn's field day was over, I headed to my fourth grade class to join them for their field day (I teach at this same school, but am still on maternity leave). I've brought Aiden up a couple times to my class, but not since he's had his hearing aids. As my fourth graders surrounded me and admired Aiden, a few of them asked about the "things" on his ears and again I told them about his hearing. As I think about it now, I should've used this as a teachable moment on uniqueness. That was one of my biggest lessons all year long, how we are all unique and special in our own way. Oh well. They were too hyped up for field day, and really had the same reactions as the first graders ... "oh, ok, cool". Kids amaze me!

Now, to the other spectrum, parents. Most of my student's parents are aware of Aiden's hearing loss and have been very supportive and were excited to see him in his hearing aids. A lot of the parents throughout the school I don't know, but they know me from working at the school. They'd rush up with a big smile to see Aiden and I'd sorta see their smile disappear with a quiet "congrats ... cute ... how is he? is everything ok?" and they'd walk away ... no more conversation, nothing. I was okay with this ... it's not like we all know each other, BUT, I did think, we could still talk, we don't HAVE to talk about what you see, he is more than his ears.

What I've always known and have experienced myself, is that disabilities scare people, adults I believe, more than children. Kids are amazing, they look past the disability, I've seen this in my classrooms. What I learned yesterday is that I am not scared anymore. I was so proud to walk around with my son and was ready for anyone to ask about his ears. I am proud of who he is and will not hide behind his deafness, because it's his deafness that will enable me to be more than I ever was before!

The Hearing Aids are On

Today was Aiden's FIRST hearing birthday! He was up at 5:30 am to eat and was all smiles after that! He knew it was his big day and that I needed those smiles to help me through the morning! Our appt. was at 8, so after getting Ryan & Kailyn out the door, Mike and I headed to the audiologist. The appt. went great - they gave us Hearing Aid 101 class (how to clean them, the parts, how to turn them on/off etc) then showed us how to put them on Aiden, which he didn't like one bit! His ears may not work, but his lungs sure do! They fit perfect though! He didn't have much of a reaction, but like the audiologist said, it's like his new "ears" are just being born and are only one minute old. Just like a newborn won't know his spoken name, neither will a baby just hearing for the first time. Again, they don't know yet if he's just getting vibrations or if he may be hearing even a little bit. We're going to go with option 2 and believe that he is hearing, even if it's just a little bit! Even if he's not, we're all going to continue on like he does! He needs to wear them all waking hours, which right now, depends on what day of the week it is!


He took a great nap for me today, so I didn't get the hearing aids back on him until after his bath tonight. Everyone was gone, so it was my time to check them out on him. They're so small and I hate pushing the earmold into his ear, but the snugger you get it to fit, the less feedback (buzzing noise) the hearing aid lets off. Look at how cute he looks!


He was fussing after his bath (probably because I was trying to stick some foreign object in his ear for the first time!), but once I finally got them on he calmed down and then him and I just sat and chatted. He was smiling and cooing back with me, which he usually did before the hearing aids, so I performed the "binky test" to see if he'd stop sucking on it when I talked to him and he did ... multiple times! I barely have a voice right now, thanks to Texas' lovely allergy season, so my voice is real deep and it's hard to talk ... but I didn't give up! I even tried to sing him a few songs - no tune what-so-ever! He didn't like my singing very much!But, when I stopped singing, he got to be all smiles again. That's okay ... I wouldn't want to hear me sing right now either! Here are a couple more of my binky baby ...

So, the day was great and Aiden started it by teaching me a lesson - baby smiles cure all! I had all those worries for nothing. I really thought the sight of the hearing aids on him would make it real and get me down. Well, fact of the matter is, this is real, my son is deaf - no denying it. And the hearing aids, well, they make me realize we are on our way to a miracle. This is our first big step in our pursuit to let Aiden speak and listen. I'm already so proud of him! We have many steps to go and we're ready for the hike, but for now, we're all in step for our journey with hearing aids!

Our first big step ...

Aiden gets his hearing aids tomorrow. Our appt is at 8 a.m. I know our son is deaf, and I'd like to think I've accepted this, but I don't think I have - not 100 percent - not quite yet. I want to cry just thinking about it, but I know this is our first big step towards his speaking and hearing. I have to be ready for the struggle of keeping them on him, the questions I'll get asked while we're out, ... but of course, it will all be worth it! They say there is a constant buzz coming out of the hearing aids because babies ears are so tiny and their ears are growing faster than they can make new molds, so we'll always be at the audiologists getting new ear molds for them. In fact, one of the families I am in touch with, the little boy's nickname is Buzz - he's as cute as can be and has a great story! I am excited to see what the next step is after this. I think they test him to see if he hears anything with the hearing aids on. I pray that he can, even though they tell me now that he won't, but I refuse to give up any hope, no matter what they say! Even if he hears just a little bit! No matter what though, I'll continuously chat with and sing to him like he can hear, because his smiles and conversation back tell me he loves it - and so do I!

So, here we go, first big step, hearing aids ... all I can say is bring it on, I'm ready for my precious bundle to start hearing!