and yet some more Out of the Booth mapping

There's not too many CI moms I know out there that would be happy to walk out of the sound booth with this audiogram (top line = left ear and bottom line = right ear):

now look at the speech banana and mentally place his audiogram in it (and remember, anything above the connected lines, he CANNOT hear).

not good. at all.

but, if you were a fly on the wall in the booth with us, you'd know why I am quickly learning to take his audiograms with a grain of salt. Bottom line,

Aiden does not perform well in the soundbooth. period.

How can I take this audiogram too serious when this same little boy can repeat each the six ling sounds with me (each ear alone) standing 10-12 feet behind him and speaking them at just above a whisper? According to this audiogram, he's far from hearing the /s/, and pretty darn close to barely hearing the /m/ or /sh/, yet he can imitate them and uses them all in speech pretty perfectly. Now, he has been dropping his /p/ and the endings of words (t, ed, s, k), and his audiogram does show this. But it's not a great representation of what he is truly hearing.

Aiden clams up in the booth. When he's not sure of himself, he does nothing. He's not one to sit still. He knows what he's supposed to do, but shows his power. He does great on the NUCHIPS (a speech perception test where he has to repeat back a spoken word) and even did sorta ok on the HINT (hearing in noise test where a sentence is presented in noise and listener has to repeat it back. He scored 49% on this, not good, but not bad for first time ever taking it). Listen and drop to pure tones? ya, whatever. He'll hold that block or marble or peg or whatever it is to his ear for.ever. Goldfish, he eats them. m & ms, chocolate melting all over. Stickers, sometimes, but just for a bit. Marbles, he's shaking the can (and when we move it, he reaches out to touch it just to hear it make the slightest noise, on purpose, then looks at us with that grin, again, showing his power). Tones mean no.thing to him and so it is very hard to get a true solid audiogram. 

And without a good solid audiogram, how the heck does an audiologist provide a good solid map?

based on phonemes.

Leaving the booth I was terrified at the thought of the changes they were going to do to his maps, but once we got to her office, I saw right away she was all ready to test him herself, by having him imitate back the different phonemic sounds which make up the words in our language.

and by doing this, she verified that he is actually hearing the /s/, /ah/, /sh/ and /g/ among a few others, and that he really is missing the /p/, /k/, /t/ and /f/ among a couple others. She'd then map him based on his imitated responses and test him again to confirm. 

(a little funny by my wee entertainer - as the audiologist was asking him to imitate a sound, she noticed aiden was watching and responding by which letter her finger was on instead of giving the sounds based on hearing. After a good laugh, she had to pick up her paper so he couldn't see which letter she was wanting him to imitate. She didn't realize mr. smarty pants knew all the sounds of the alphabet).

By the time she was done he imitated back a /th/ and /v/ sound! Now, he may not be able to perfectly voice these sounds in words (saying a sound in isolation is a little different than putting it together with other sounds to produce words), but the fact that he can near perfectly imitate them back, tells me something that his audiogram doesn't - HE IS HEARING ALL THESE SOUNDS! 

Here are a couple other posts about this out of the booth mapping experience.

• why we sought out a different way to mapping
• first recap of mapping out of the booth
• another CI mom's story of phonemic mapping

We have gone round and round with his maps since six months post activation. Some would blow it off that he just doesn't use his CIs as well as others, that he needs more time, that he's just a "late talker" a "boy" and that "he'll get there". Well, I don't have time to wait and see when it comes to my child's hearing and spoken language. I've learned, when a child isn't performing at a level they should be, first things first, CHECK TECHNOLOGY. and for this reason, we started this phonemic "out of the booth" mapping. We needed to know that Aiden had a good map before slapping another diagnosis on him. Yes, Aiden does have additional {small} challenges, but by golly, this has been heaven sent, and at least now we KNOW he has a good map to better tackle his other challenges; we KNOW he's hearing all the sounds in order to put them together and into words; we KNOW what he is hearing is what he should be hearing.

and if that's not enough for ya, based on the Goldman-Fristoe 2 Test of ARTICULATION, Aiden has made:

12 months progress with his speech sound production in a matter of five and a half months!

oh, and btw, we started phonemic mapping him six months ago. 

Smorgasbord of Updates

Not posting in awhile PLUS tons of unfinished posts sitting out in Never, Never Land EQUALS stress in my OCD mind. To clear my head and stop the massive pile up of posts screaming to be finished, I decided to sum it all up in one, which is probably best since I'll be to the point and not ramble on like I often can.

1) Vacation! - Let's start with the important things first. ; ) Aiden's daddy and I just got back from a much needed get-away to Vegas with my husband's sister and her husband. It was our first trip without kids AND without going to see family in over 10 years! Our 16 year anniversary is coming up (smile) and they just celebrated their 10 year (smile). Aiden's awesome grandma drove in from Wisconsin to stay with the kids while we flew off to Sin City. I didn't realize how worn out I was until my body took over my fun and went into complete relax mode. I did more laying in the sun and sleeping than anything else. My mom did a FABULOUS job in keeping up with Aiden's CIs, participating in his therapies, and by the time she left, he even had some new vocabulary added to his growing list. We all had an amazing time, came back more relaxed and are now ready for the beach!

2) New Audiologist - We decided to switch Aiden's audiology center from Cincinnati Children's to Cleveland Clinic strictly for convenience. We loved the audiologist we had in Cinci, but traveling two hours west one week then two hours north another was wearing. Our newest audiologist was trained and highly recommended from our old one, works hand in hand with Aiden's AVT, Dr. Don, AND is training to be an AV under him as well. So not only is she Aiden's new audiologist, she participates in his Saturday AV therapies as well. She is absolutely wonderful with Aiden and he responds very well to her.

3) Mapping Madness - A few weeks ago we had a third audiology appointment within six weeks. We're still trying to get Aiden's maps back on track and with the looks of his latest audiogram, we're well on the way. I was shocked Dr. Rachel got results across the board like this because the boy wouldn't sit still and really wanted nothing to do with the testing. So I'm sure they're even better than what the audiogram below shows, which would put him hearing between 20 and 25db across the board! We go back in a couple weeks for AV therapy and another audiology appt. to confirm these results and make any necessary mapping adjustments.

4. Speech Therapy - Back in early summer I debated adding on more of a traditional speech therapy for Aiden and decided to go ahead and try it for six to eight weeks. Well, we are going to continue with Ms. Cheryl as we absolutely see a difference in Aiden's overall tone and breath control. She has been amazing at providing us ideas on how to work with Aiden's sensory issues and low muscle tone which are affecting his motor planning skills and therefore his speech production. We know Aiden gets it receptively. He's well above age level in his receptive language. It's expressive where he lacks. He is starting to speak in a lot of two/three word sentences, it's just that you can't understand a lot of them (unless it is something that has become very repetitive for him, such as "get down" or "all done" or "it's stuck"). If he were to say each of the two or three words separately, you'd understand each one pretty well. But when he goes to put two or more words together, they come out all jumbled. We brought up the concern of apraxia, but she doesn't see it in Aiden. She is also helping us with specific speech sounds (right now we're working on /p/). Since we've been seeing her, Aiden is now producing a perfect "ee" and can hold a sound for a much longer duration AND at different pitches; something he couldn't do before.

5. Auditory Verbal Therapy - We continue to see Dr. Don two times a month. We drive to Cleveland once a month so Aiden's daddy or siblings can participate in a Saturday session, and then to the college where Dr. Don teaches once a month which is closer to home. This man is amazing and Aiden responds very well to him. We're blessed to have him on our team. Right now we're working on 1) identifying "ing" verbs and using them in simple sentences such as, "The boy is riding.", 2) sorting higher level groups such as types of animals (farm vs. water vs. zoo/jungle) and fruits vs. vegetables and 3) discriminating between similar sounding words, such as house and mouth, 4) story telling through Aiden's daily experience book (which I'll detail in a separate post).

5. PT and OT - Six months ago my son couldn't walk on or off a one inch floor mat without falling. He would have to completely stop, throw his arms out for balance, then carefully walk up or down. One inch. Many days he walked around like a drunken sailor. He could barely run and definitely couldn't jump. There's not a better time to see improvements in gross motor than summertime. Parks, play dates outside, riding bikes, climbing, running up and down hills, camping, swimming, etc. This summer we saw TREMENDOUS gains in Aiden's gross motor. He is now RUNNING, jumping (well more like trotting, but sometimes he'll get both feet off the ground), and best of all - he's PEDALING his tricycle! He still has some off balance days, but he's learning to compensate for them and is finally keeping up physically with his peers.

With his gross motor gains and ideas from his wonderful PT to continue to work on at home, we're going to stop PT for awhile and pick up OT, but this time with a therapist who specializes solely with sensory integration. Sensory is such a beast to understand and can affect so much, including speech production. I don't feel like I have a good handle on it and need a lot better guidance on how I can help Aiden conquer his sensory needs in order to move forward with his expressive language and speech production ... oh and learning how to calm his major hyperness/daredevil ways wouldn't hurt either.

6. Transition Time - I CANNOT BELIEVE we're at the point of leaving county services and beginning to look at PRESCHOOLS! To me, this means Aiden is almost THREE and growing up way too fast! I'm in the process of touring local preschools (more to come on this) and at the end of this month we'll have our transition planning conference with our local school district. It is a very brief meeting which we'll introduce ourselves and let them know which preschools we'll be touring as well as where we would like Aiden's evaluation done to determine eligibility of services.

7. and the best for last - Aiden. Aiden is taking off. His vocabulary is growing daily (I know. I SO need to update that vocab. list to the right), he is reaching the goals set for him, and you can just see his little brain constantly in discovery mode. He knows his colors, his shapes, his numbers (not just rote counting, but identifies them written up to 10) and is starting to recognize certain letters. He's having little conversations with us. He tells his brother, sister, and the cats what to do, he tells everything bye-bye (except his therapists, because why on earth would he talk to them?), and is starting to express his wants and needs so much more than he ever has. He has finally learned to EXPRESS the word NO ... and as he says it, he signs it just as fast! Dr. Don says he's on the verge of a 2-3 word sentences language explosion, "Deafness, shmeffness", he says, "he hears and speaks better than many hearing kids I know."

I love this journey.

Audiology Round Two

Friday we hopped in the car for a trek back to Cleveland to follow up on Aiden's ugly audiology results from a few weeks ago. At that time, we left with four new programs to work up to. By this past Friday, we were on program 3, ready to change to program 4, but I held off as I wanted to see how he did with P3 and I didn't want him testing with a new program.

The results looked much better than last time, but still weren't where we want them to be. Aiden did pretty well behaviourally in the booth for his right ear, but as the left ear testing began, hyper mode kicked in. Maybe I shouldn't have bribed him with all those m&ms during the right ear testing.

Anyway, these were the results from three weeks ago:

and after gradually turning up the levels in the low frequencies on both ears, and the high frequencies on the left ear, the newest audiogram looks like this:

Good progress was made in the lower frequencies, which is wonderful. He is right where he needs to be for the mid frequencies and right ear high frequencies (except the measure at 8000 hz, which I don't believe is accurate), but the left ear at 4000 Hz we need to watch as well as both ears at 8000 hz. These higher frequency results are most likely due to Aiden's not wanting to "play" anymore. We couldn't get a SRT on his left either. We decided not to make any map changes at this time, but to move on to P4, and come back in two weeks for another recheck.

Overall, I am very happy to see the improvements. It is so important that he has a stable map to continue his language development. I definitely want to see the lower frequencies come up a bit and get a more accurate result on his left ear all around.

So two weeks from now we'll head back to Cleveland for another soundbooth and any mapping changes needed. Since we switched to P4, Aiden has repeated some very good /e/ sounds (which have always been very nasally), a good long i - which he now says "bye" and "hi" instead of bah and hah like someone from the deep south, and repeats the /m/ and /oo/ immediately when said at a good distance, mouth covered, unlike he was before.

Not So Pretty

In my last post, I begged Aiden to perform in the soundbooth and to my surprise, he did beautifully. Aiden has typically been very good at repeating the Ling Six Sounds (ah, oo, ee, s, sh, m), which truly helps at home, but not so much in the soundbooth where they test using pure tones.

At one time, Aiden would try to repeat the sound of the tone, which at least showed us he heard it, but he's dropped that. We're trying to steer him away from Visual Response Audiometry (VRA), which is where Aiden has been trained to look at a toy light up in a box every time he hears a sound. I've never liked this though, because Aiden is constantly looking for that damn toy to light up, even if there's not sound. We've been conditioning him in using Play Audiometry or the "listen and drop" method for quite some time. (for friends and family, remember taking hearing tests and they always wanted you to raise your hand on the side you heard the sound? Well, for Aiden, he holds an object (ball or peg or whatever it may be) to his ear and then when he hears the tone, he should drop the ball in a bucket, or place a peg on a board etc.). This doesn't always work since Aiden likes to decide if he wants to "play" this game or not, which can make for testing in the soundbooth, quite difficult.

For those of you who know Aiden, know he likes being his own boss. So this time around he decided he'd take on his own way of showing us he heard a sound by yelling out "YAHOO" or "YAY" each time he heard it and would then drop the ball. Hey, whatever it takes right?

By playing along with him, we were able to get reliable results from how he was hearing from 250Hz to 4000Hz. We were in the soundbooth for nearly an hour with Aiden cooperating with his YAHOO's and YAY's the whole time. I am so proud of my little trooper!

Now, on the other hand, the actual picture of his audiogram is not so pretty. Take a look.

He had better results in the low frequencies with his hearing aids (about 45 to 50db). Seriously.

His SATs (speech awareness thresholds) were 30db for his right and 20db for his left.

For those newer to an audiogram, it is a graph that provides a look at the levels Aiden is hearing. The top of the chart shows 125 to 8000 Hz which are low to high pitches from left to right AND the left side of the chart shows 0 to 130db which is soft to loud intensity of sound from top to bottom. Normal hearing lies at 20db or better across all frequencies (pitches).

I took his audiogram and mapped it out on the speech banana so I could see exactly what Aiden was missing. It looks like this ... (sorry you have to squint your eyes to really see it).

The two straight red lines on 20db and 30db is where we WANT Aiden's results to be, and particularly closer to the 20db mark as possible. We do take into consideration that Aiden is two, he had just sat through an hour plus of AV therapy, that it was late in the day, and that he's probably hearing a little better than what he chooses to respond to. BUT, I have to admit his YAY's and YAHOO's were right on, and even if you add on 5 to 10db to some of the lowest points, he's still missing out on some sounds of speech. Not good at all in my book.

I used a purple L and line to indicate his left CI results and a blue-green R and line for his right CI.

• All the sounds above both the purple and blue-green lines, he is not hearing at all, like the /z/ and /v/ (which he had /z/ at one point constantly imitating a bee). It also shows he's not hearing m, d, or b, but he does use them in his speech, so he probably is hearing them somewhat, but definitely not the /m/ with his right CI and definitely not as well as he should be with the left.
• All the sounds between the purple and blue-green lines he's hearing with only the CI the sound is BELOW. For example, it shows he's hearing i, a, and o with his RIGHT, but not the LEFT.
• All the sounds below both lines, he's hearing with both CIs. For example, h, sh, and ch.

I am VERY FRUSTRATED with all the mapping issues he's been having and I just don't understand why we can't get him between 20db and 25db across the board. Honestly, this is the same boy who was hearing at 15db to 20db across ALL frequencies for the first four to five months with his CIs and we haven't seen 20db since (except for at 8000 hz with his left CI). Ever since the appointment I wasn't too excited about, about a year ago, that continued to get worse and ultimately led to these results, we've been trying to get his maps back on track but can't seem to find that destination.

The hardest part about it all is that Aiden does repeat the lings AND his vocabulary is growing. Yet, in the same breath, it really is pretty indicative of his ling checks at home. We've been having trouble with him repeating the lower frequencies, particularly /m/ and /u/, but he rocks out the higher ones (/s/ and /sh/) even when whispered. Hence my crazed mom madness lately about getting him in to see the audiologist every couple of months. Follow your gut ...

... and although we've seen his vocabulary growing the last few months, you can tell by this audiogram, that he's compensating for lost sounds in one ear with the other ear.

*DEEP BREATH*

So with all said and done, we left with four new programs on each CI to work with over the next few weeks. They increased the T&Cs (threshold and comfort levels) for the lower levels (up to about 1000Hz) on his right and left CI, as well as the 4000Hz level for his left CI. About every four days we'll switch to the next program and watch Aiden's reactions very carefully. We go back in about three weeks to do another soundbooth check and pray the new programs are working and we see better results.

I feel like we're back to square one. Again, we've seen some great strides with Aiden the past six months (I'm in the process of documenting his recent IFSP review), but we're still not where we need to be, not with that audiogram. I'm not one for guessing games, so until we get this right, we'll be making frequent two hour treks to the audiologists office.

Let's just hope Aiden continues to cooperate, even if it is through "YAHOO's" and "YAY's"!

Note To Aiden

Dear Aiden,

About a month ago we headed to see Dr. Michael for a mapping appointment. You decided you weren't going to drop the balls in the bucket when you heard a sound, but instead bounce them all over the room. So we busted out the chips for you to "feed" the pig. You decided you didn't want to feed the pig like we needed you to feed the pig. In essence, you showed us who was in charge and who wasn't going to cooperate no matter what tricks we tried to pull. So we took a break, a little walk, and came back to try again. Nothing. Nada. Nilch. Your mind didn't change. Four hour round trip drive and nothing. As hard it was for mommy to leave with no results, I appreciate your strong willed nature and the huge possibility that you're just SPENT with two years of appointment after appointment.

Today dear son, we are heading to see Dr. Don for AVT. We haven't seen Dr. Don since June and I hope you are very excited to share your newest experience book showing all the fun you've had all summer. Just as important, we are seeing Dr. Don and Dr. Michael's friend to check how your "ears" are hearing. You have not been responding well to lower frequency sounds with your right ear AND we are still trying to get you back on track to hearing at levels better than 30db across all the other frequencies besides the higher ones (which you're rocking at 15 to 20dbs ... yes, you sure do know that /s/ and /sh/ and speak them VERY well in all parts of a word).

So I ask you, my strong minded little wild one, as hard as it is for you to sit still, and as much as we know you are "in charge" of what happens in the sound booth, please, please, please cooperate today. Yes, I'm begging you. and remember, ice cream will be waiting at the end along with a fun filled night with your cousins! All you gotta do is listen and drop. Listen and drop.

Love you!

mom

p.s. how about m&m's? ya, m&m's AND ice cream!

One of Those Weeks

When we started this journey over a year and a half ago I knew I was in for some extremely hard work, sincere dedication, and definitely a roller coaster ride of emotions. Eighteen months ago I watched all these videos of deaf/hoh children and they provided me great hope - tremendous hope that one day my son would babble, tell me "I love you", yell at his siblings, all because he could HEAR through the miracle of Cochlear Implants. I know they say "EACH CHILD IS DIFFERENT .... never compare your child to another ... blah, blah, blah." I TRY MY HARDEST NOT TO, but how can you not.

I'm down on myself right now and I hate writing these posts, BUT, I think the reality of having a deaf/hoh child is that you have these days, no getting around them. I have reasons for being Miss Debbie Downer right now, which I'll get to. I truly believed that by the time my son was this age that he'd be further than he is ... because I've watched the videos, I've talked to moms.

I attend Auditory Verbal Therapy with him, I've put my career on hold and have become his full time mommy/primary therapist, I take him to an oral school so he can be around hearing peers for a language model along with their awesome language theme based program, I have a TOD and PT come to our house every other week, I read other's blogs and talk to other mommies to get ideas, I work, work, work, and work with my son (I mean PLAY, PLAY, PLAY), all to get these dang reports that make me wonder if I'm truly doing enough ... and now I'm finding out that we need to integrate even more therapies into our days ...

... and it is SO DAMN FRUSTRATING!

It all started Tuesday. Aiden has OT right after his class to help him with his gross motor skills (they don't have a PT program at the school, but still wanted to work with him). After his OT services, the therapist told me Aiden is having some fine motor skill issues and would benefit from at least an hour and a half of OT services per week. Great. Add it to the list.

THEN on the way home I open up the audiology report containing Aiden's soundbooth results.

NOTE TO ALL MOMS ... FOLLOW YOUR GUT! YOU ARE RIGHT! NO ONE KNOWS YOUR CHILD BETTER THAN YOU!

As I've written in the past, I was not happy at all with Aiden's last soundbooth/mapping appointment back in Sept. Going from 15-20 db across all frequencies to 25-30db was not okay with me. Plus I felt he just didn't react in the soundbooth like he normally does. I didn't feel good about any of it. I brought up my concerns with the audiologist (which wasn't his typical one), but was told things were just fine, he's doing great, 30 db is wonderful blah, blah, blah ... and I accepted it and went home, knowing my little rockstar had been at 15 to 20db since his first soundbooth after activation.

I then brought my concerns to his school audiologist to get a second opinion. She took our case history and got Aiden in the soundbooth as soon as she could, but he wouldn't perform. Then he had three ear infections, the flu, and respiratory issues all within the month. Finally last week, Aiden was cooperative, but she wanted to confirm her results the following school day - which was this past Tuesday.

When I looked at the results on my ride home my eyes just welled up with tears. I had known something wasn't right. Aiden flatlined at 40DB with his left ear, and with his right ear was at 30db/500hz, 55DB/1,000hz, and no response from there on out. My stomach hurt.

THE NEXT DAY (yesterday) we had an appt. at Hopkins with Aiden's primary audiologist and his school audiologist joined us there. His soundbooth results were better, but not much. The results showed he definitely needed some program changes, especially in the right ear where he was getting very little high frequency sounds. All I could think of was how we had to move forward ... don't think of the past, it was over.

Let's hope it's fixed. He'll be tested next week at school to verify he's still responding and then return to Hopkins in three weeks to check his maps again. We left there with four programs, one for noise, and two additional ones to work with if we feel he comes to another standstill. So glad his audi is back.

FAST FORWARD to today, parent-teacher conferences at Aiden's school. As we headed there, I read over the three page typed report from his teachers. There were A LOT of positives and he has transitioned well into a preschool setting. He likes school. But there's so much he needs to work on. A small example:

• Aiden does not yet respond to peers who approach him without prompts from the teacher. While cruising around the classroom he requires prompts to shift his attention to notice where his peers are and navigate his way around them.
• Aiden rarely turns to his name when called in the classroom (noise factor?) His teachers often have quite a bit of difficulty gaining his attention.
• Aiden is not yet finding items on request and requires physical prompts to follow routine directions.
• Aiden has difficulty attending to teacher directed activities even for a brief period of time (ex. reading a book).
• Aiden has very inconsistent visual attention to fine motor tasks which makes it more difficult for him to complete these tasks and sometimes requires cues to look at the toy while he plays.

I can't help but look at this, plus others that were listed and cringe. One part of me thinks I started him too early in school ... he should be at home with me. But then, how much farther would he be behind next year or the year after? The bigger part of me KNOWS these concerns need to be addressed now. He needs to start learning NOW to compensate for his hearing loss and learn how to be successful in an oral, mainstream classroom, with noise. I want him to learn these communication/cognitive/social development skills NOW as to not further delay him in his hearing and speaking.

All of this has been such a huge reminder that my child is DEAF and even with Cochlear Implants he is going to have challenges ... not just now, but always. and today, I.hated.it.

I couldn't take anymore. We did discuss ways I can work, I mean PLAY, with him at home to help in these areas, but I'm feeling so spent. We're all hoping that a lot of these areas are due to his not hearing very well the past couple of months and that this revamp in his maps will increase his activity in the classroom as well as with his language.

THEN on the way home I opened up his Speech and Language Evaluation. Why do I do this to myself?!? I'm not even going to go there now. I'll write about it after his IEP meeting next Tuesday. I'll just say they weren't great. Definitely not what we see at home and reinforced my son is having trouble communicating in a group setting.

To end my day, I had a Dr. appointment for Aiden's sister to start her on ADHD meds (this is after a full evaluation including IQ and cognitive tests etc). By this time though I was done with any type of "test" results. While we were there I had them perform a basic hearing test (beeps and headphones) ... I wanted to rule everything out. Well, she was at 20 db in her left and at 40db in her right?!?! The Dr. said it could've been an attention issue. The test took five minutes, I know she has trouble sitting still, but not for 5 minutes! I have an email into our audiologist.

To overcome the whole day, on the way home we turned up the tunes, and JAMMED the whole way home ... SINGING our hearts out. I needed that. and the glasses of wine haven't hurt much either.

Standstill

I'm looking for some advice and guidance. Aiden has been hearing for almost 7 months with his right CI and just over 5 months with his left, but I feel we're at such a standstill.

Aiden had a mapping appointment a couple of weeks ago. I didn't feel my usual warm and fuzzies leaving that appointment, but then again, Aiden's booth test results weren't what I was used to seeing either, not bad at all, just not as good.

His last mapping was the beginning of June, in which nothing was changed. Aiden's audiograms have been at 15 to 20 db, sometimes dipping to 25db, since each ear's third mapping appointment. This recent appointment (his fifth soundbooth since right activation and third soundbooth since left activation) he was hitting the higher frequencies at 20 to 25 db, but the lower and mid frequencies he was at 25 to 30 db. I know this is still good ... amazing in fact, but to me, it was a drop in over 10 db at some points.

When I brought up that his past audiograms were from 15 to 20 db (with a speech awareness threshold of 10db), she told me that they don't like to see audiograms at 15db because hearing with a CI can get distorted at this point. Is this true? And if so, why was it okay in the past that Aiden was testing at this level and all was great? (his current audi is on leave, so this was a new audi that I felt very comfy with).

I walked out of there knowing that 25 to 30 db is still SO amazing and also took into consideration that Aiden was not his typical "great, easy to read" tester. There is typically no question when he hears a sound, as he looks right at the speaker it comes from. This time, he played shy, hung his head low. The audi. said she could tell when he heard something based on his eyes.

So my questions:

• How often are your child's maps adjusted?
• Have you ever heard that it's "not good" to be at 15db or lower with a CI?
• How long do your child's soundbooth/mapping appts typically last?
• What should I be looking for at this point to tell if Aiden's maps need adjusting?
• LVAS/EVAS moms/CI users - do you see good hearing days and bad hearing days due to the LVAS/EVAS?
• Did you find your child went through standstills with language development?
• The only lings Aiden is repeating at this point are /ah/ and /m/. We hear very few /oo/ in his speech, but no /s/, /sh/ or /e/. Should I be worried about this?

The other reason I'm getting more concerned about his recent results is that he seems to be at a standstill with language. Last month we had a small language explosion - new sounds, new words, and all with good consistency. In the last few weeks, we've seemed to have lost it.

For awhile, he was always saying "mil" (milk), "ah-da" (all done), and "um-um" (yum-yum), among a few others. He's not saying these nearly as much as he used to. Then again, we've began to focus on new vocabulary feeling he had these others down quite well. He has picked up a couple new words, such as "baaaa" (for sheep), "mmmma" (for cow), and "bock bock" (for chicken - thank you Elmo). We've been working on these "new" farm animal sounds since day one though. The only new vocabulary he's even tried to imitate is apple, and that was just a couple times. It seems he's resorted back to his good ol' "mmmmm" for everything he wants lately. I hold out though and keep repeating "more" or "milk" or whatever word it is I know he knows, and sometimes, he'll eventually say it.

This is such a hard stage. At home, when I do the lings, he responds by pointing to his ear and saying "ah-na" (I heard that). So I know he's hearing them. I just wish he could tell me what they sound like to him. I wish he could tell me if something sounds funny. It just all seems like such a guessing game right now. Ugh.

Rockin' Right Along

Last Thursday was a very busy day. We started it off with a trip to Hopkins for an audiology appointment. I am glad to announce that it is our last audiology appointment for three months! YIPPEE!

My baby rocked it out in the soundbooth! When they played the first tone though, Aiden looked right over at the rabbit, which I have to admit is a bit "Chucky doll" like, and started to scream. (FYI about the soundbooth - tones are played at different frequencies and when Aiden responds to a sound, they reward him with showing him that scary rabbit in a box playing an instrument. I keep him distracted by showing him pictures in a book or playing with some toy so he's not just watching and waiting to see the rabbit). We thought he'd shut down after that and I'd have to reschedule, but he manned up and we finished the soundbooth WITHOUT showing that scary rabbit anymore!

Aiden's left ear has not only caught up with the right, but surpassed it by 5dB! So Aiden is hearing at 15 to 20dB across all frequencies and his speech awareness threshold is at 10dB - in both ears!!!!

Yep ... 10dB! This is the same baby who had NO RESPONSE on his ABR at 120dB! This is the same baby who couldn't hear a jet airplane (without his CIs), if he was sitting right next to it. This is the same baby who I worried and fretted (and truly continue to do so) over for the past year wondering if he would truly hear my voice one day.

and now he's hearing my whispers of sweet nothings. my whispers of I love you.

AMAZING. JUST SIMPLY AMAZING.

After the soundbooth I talked to our audiologist about my concerns with Aiden's expressive spoken language. He will imitate the /ah/ and /m/ sounds, is starting to babble a little bit more (ba-ba's, na-na's, a-ba's, "mar" for more) but still not as much as we thought he would by now. She explained how important the receptive (listening & comprehending spoken language) part of learning to speak is; that with everything we "feed" into Aiden's little brain, it is more important right now that he is comprehending what we say instead of him just constantly repeating what we say. The better the receptive base, the better the expressive spoken language. She also reminded me that hearing babies hear and take things in for a good 9 to 12 months before their first words ... and Aiden's only three months hearing.

She continued, "For example, we know Aiden understands when you say "airplane" because he'll sign airplane", and as soon as she said it, Aiden looked at her, smiled, and signed airplane and belted out a good "aaaahhh" (without her signing it). We just laughed and clapped! One example of how we know Aiden is not only hearing us, but comprehending what we are saying to him.

After our Hopkin's appointment, Aiden and I headed down to the Baltimore Harbor to have lunch with a family from Texas. I "met" the mom through the Yahoo group CICircle. They were in town to have their youngest son's second CI reimplanted by the same surgeon who performed Aiden's. This was going to be the little boy's third surgery on this ear and they had almost given up hope until finding Hopkins. This mom and I talked via email for a few weeks before their trip. Being from Texas, I was so excited to meet up with them. The one thing I did not know, until the night before, was that this little boy's mom and dad were both Deaf as well (I found this out as she called me through relay). All this time I have been communicating with hearing moms of deaf children ... I guess I hadn't really even thought of what I'm missing out on, until now anyway.

As I was very excited to meet them, I was nervous at the fact that 1) my signing abilities are next to none - except for the handful of baby signs we use with Aiden (well I can fingerspell, but that doesn't make for the easiest of conversations); and 2) I couldn't believe I had just then realized the very few contacts I have with Deaf parents with D/deaf children. I have to admit that I was relieved when my Texas friend communicated orally and was a great lip reader. She helped me through conversations and signing with her husband AND made me realize I needed to learn a lot more signs.

What an experience it all was. Absolutely wonderful. Both mom and dad are part of the Deaf community and I was intrigued by their life story and the decision they made to get their two youngest boys bilaterally implanted (their oldest child is hearing) although neither mom nor dad have any type of aided hearing (mom is possibly considering a CI herself but wants to take care of her kids first). It tore my heart apart for her that she didn't have a lot of support from friends and family within the Deaf community who were anti-implants. She has been through a lot, but fully believes in what she wants for her boys and keeps trucking along. I admire her for her strength and perseverance.

We are going to meet again this summer when they fly back up for activation. I can't wait! I found my visit with them to be heart warming, a tiny glimpse into Aiden's world, as well as into the Deaf community ... I can't help but imagine everyday what it would be like for him without CIs or truly, what it's like to be Deaf. It's nice to meet and befriend people who are there. Thanks for an enlightening time!

Bilateral Soundbooth Testing

Today we had another appointment up at Hopkins, this time to see how Aiden was doing with his left ear after 2 weeks post (re)activation. This was the first time since his left ear was ever activated that we got to see booth test results for this ear.

We've been seeing problems at home and therapy with Aiden responding to the /s/ sound since his left CI was activated. /s/ is a very high frequency sound (greater than 4,000Hz) and is heard around 25 db. We knew from Aiden's last soundbooth on his right CI (which was done the same day they reactivated his left CI), that he was hearing between 15 and 20db across all frequencies. We confirmed today that his right ear is still doing great, but that we did need to fix his map on his left CI.

I have to say though, that I am still VERY impressed at Aiden's results! For his left ear, he tested pure tones between 20 and 30 db! For speech awareness threshold, he tested at 25 dB in his left and 15 dB in his right. His left ear audiogram sorta looks like a hill - he tested at 30 dB at 250 Hz, rose to 20/25 dB from 500 to 2,000 Hz, then dipped again to 30 dB at 4,000 Hz (this is where the /s/ sound falls). So his map was changed to adjust for these dips at 250 & 4,000 Hz. Aiden's audiologist also gave us two other programs to work with in case we still don't see much response to /s/ or /m/ in the next week. He did respond right away to both sounds in her office though.

All in all, Aiden's been doing great and we continue to be amazed by our little man everyday! Since his left CI was activated two weeks ago, we've really seen some good progress. For example, his grandma came in town to visit, and before Aiden ever saw her she called his name. I figured he'd hear her voice, but look at me since it was just another female voice. But he turned around and looked right at her and smiled! We've also noticed that he's recognizing sounds from longer distances. Just over two weeks ago, his hearing bubble was about three feet. Now, he'll turn towards sounds or voices six plus feet away! I don't know if it's that the right ear is just taking off, or if it's the help of the left ear, but we're amazed! We are so happy we went with bilateral CIs!

Now we're good to go for a month! It'll be nice not having to drive up to the hospital for mappings every week or two. When we go again in the beginning of June, Aiden will go in the soundbooth and we'll make any mapping adjustments as necessary at that time.

Six Weeks Post Activation on Right Ear - Update on Left Ear

I've been horrible at keeping up this blog and so much has been happening! I SO want to make a video, but I am SO busy what seems like ALL the time! I'm toting my older two kids to and from school everyday, which turns out to be over an hour trip two times a day, then there's AV therapy or Infants & Toddlers (Aiden's TOD and PT) or audiology or lately, back to see the surgeon. Then Aiden is such a busy, busy one year old that does not like to play by himself. I think with all the "play therapy" I've done taught him he only likes to play if mom or dad is sitting on the floor playing with him. UGH! Gotta break this habit and fast! So anyway ... here's a quick recap of what's been going on:

Aiden's left implant looks GREAT! After surgery, he had a bout with fluid build up and had to rewrap this ear. We finally got the left CI back on this past Monday (10 days after surgery) and our baby's bilateral again! Whew! He did great with reactivation and has barely tried to pull it off since! We're back to P1 (program 1) with this ear, but have two additional programs to move up to over the next two weeks. Then after these two weeks we'll go back to the sound booth to check both ears, and readjust, if needed, from there.

Aiden was also tested in the sound booth Monday. My baby is hearing at 15-20 db across all frequencies with his right CI!!! To me, this is unfreakinbelievable! 15 to 20 db!!! This is the same boy who just a year ago couldn't hear anything at all at 110db and now he's hearing at 15-20db! Are there truly any words to describe this?!?

Some very fun, amazing, just out of this world, I thought I'd never experience with him things he's doing include:

• Whenever I do the /ah/ sound - he signs airplane (well, with his pointer finger flying around) - without anything from me except the sound /ah/! No joke.



• He is turning more and more to his name! I called his name all day today and almost each time I said it, he turned, looked at me, and smiled!



• When he's in his booster seat in the kitchen and someone comes in the very squeaky front door (which he cannot see), he turns to look who's coming in!



• When he went to dump the cat water bowl today, as always I said, "Aiden, no-no", which he typically never hears and continues to dump the water all over, but today he stopped! STOPPED, looked at me, went to do it again, I repeated myself, signed no, said it again, and he crawled away! I tried it again later as he tried to rip apart an arrangement ... and he STOPPED again, looked at me and smiled, very slowly put his hand up towards it again, I repeated myself (without sign this time), and he crawled away! I almost wanted to put him in situations so I could say "no" to him just to watch him respond! I've never been so happy telling a child no before!



• He's starting to babble ... a little bit. This is my biggest concern, but like his audiologist said - he's only six weeks hearing with one CI. True. And we are finally getting some "ah's, da's, and ma's" and today I even heard a couple times of him just gibber-gabbing like a hearing baby does, but still not like he did with his aids. We'll get there though.



• Sometimes, when we say "bird" or "tweet-tweet" he will look out the window at the bird feeder and then sign bird (which he does backwards and with his full hand). And sometimes when I say "cat" he will look around for one of the cats.

I need to get some of these things on video, but again, it's been so nonstop with all three kids. I can't be more pleased with how far my little man has come this past six weeks. I hate all that he's endured, but we know the end result is worth it. He's a tough little thing with an amazing disposition. He looked at me tonight, with those big blue eyes, and as I looked back at him, he just smiled at me. Smiled a big ol' smile. And he melted his mommy's heart just one more time today.

Nine Days Hearing ... A Little Rockstar!

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

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

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

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

Other amazing firsts I've seen at home are:

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

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

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

Going for the Bilaterals

Aiden had his last behavioral soundbooth January 12th. Well, obviously not his LAST, but his last one before his big day (which is just three short weeks away!). They tested each ear separately and the results were very similar to his last test -- he showed responses, with his hearing aids in, at 45db to 50 db across all frequencies. What is weird is he always seems to dip a little in the middle frequencies, his audiogram looks like the speech banana to a sort.

We took the past month or two and really looked at all the pros and cons of bimodal (one CI and one hearing aid) and bilateral (two CIs). We researched and read all we could on each. We know families whose child(ren) have been successful with bimodal and bilateral CIs. We questioned and questioned, but what we always came back to was that bilateral would be best for Aiden. We decided to wait and make the FINAL decision the day of this past soundbooth, but with no improvements, our decision had been made.

Here are just a few things we looked at when making our decision.

What we liked about bilateral CIs:

• Better localization and better understanding of speech in noise-- Kids learn so much from other kids and we believe that bilateral CIs will be a huge help in the classroom - for the noise and to help determine whom is speaking and from which direction.
• Better sound quality and more sound balance
• Less fatigue at the end of the day - I know at the end of any seminar I attend, I am worn out. Who would ever think listening would be such a hard task, but for a deaf/hoh child, even with cochlear implants, it can be very tiring!
• If one side breaks, there's the second one for back up.
• I also read many personal stories from parents or kids themselves saying that their child became more social with peers and participated more in class once they were bilaterally implanted. I believe this has to do with confidence. I can relate this to one of my fourth graders. I knew his hearing could fluctuate due to fluid/tubes. Whenever he was very quiet in class, stopped participating, and was very apprehensive if called upon, it alerted me to contact mom. Once the problem was corrected medically, he was a whole new student.

Some of the places we found helpful information on bilateral CIs are here, here, here, and here.

In this write-up, Is Bilateral Really Better?, this wonderful mom (and mentor to all us newbies out here), did an excellent job comparing unilateral vs. bilateral CIs. And, as she states in her article, bilateral CI's are not for everyone. There may be significant usable hearing in one ear, there may be insurance issues, or maybe medical issues that do not allow for two implants among other things. We are lucky that we have the choice between bimodal or bilateral, and bilateral is what we've determined is best for our baby.

What we liked about bimodal:

When we started seeing Aiden doing well with his hearing aids and learned his deafness was due to EVAS, we started thinking about just implanting one side. Here are factors we considered when making this decision.

• Use of residual hearing -- Through the great use of his aids and his learning to listen, Aiden has shown us that he does have some residual hearing, and therefore the sound of music and sound quality in general could be better for him. With CI's you hear electronically, with hearing aids you still hear acoustically (the difference was described to me by the analogy of a song played on an acoustic guitar vs. the same song played on an electric guitar). In a bimodal situation, it allows for all sounds of speech through the CI (hearing aids provide more lower frequency sounds than the higher ones), yet still allows for natural acoustic hearing through the hearing aid. One thing we had to consider though, was with his EVAS, his residual hearing can be lost progressively, or one day, completely gone.
• Future technological advances - This has always been a thought in the back of our minds, should we "save" an ear for future technologies? We are sure that one day there will be better technologies, but we decided we needed to stay in the now and the known. NOW is the time that Aiden is in his prime learning stages and what we know is that cochlear implants will provide him optimal learning capabilities.

When researching bimodal, this is one article I found interesting.

All in all, we decided that bilateral implants are a better choice for Aiden and our family. Therefore, on February 11th (with certification from our insurance, which we're still waiting on, please cross your fingers all goes through!), Aiden will get his cochlear implants. Our surgeon agreed to perform simultaneous implant surgery, which will save Aiden from having to go through a second surgery months from now. Recovery may be a little rougher (hard to sleep on either side), but again, we feel this is the best for Aiden and we can't be more excited (or nervous)!

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!

A Day With Our Wonderful Audiologist

Last week we spent almost three hours of testing with our wonderful audiologist. Now that three hours included stopping to feed Aiden, getting set up for tests, and then all of the tests themselves. There is a good possibility we're heading up north (I'll write about this soon), so Aiden's wonderful audiologist Miss Tracy got us all prepared so when we do haul out, all of his test results are ready to hand over and we don't have to play a waiting game of getting all of these done. I type this and want to cry because I just love her and the rest of my team ... but again, this post is about his test results, I'll write about moving when I feel not as weepy!

Here are the tests he was given and his results:

• Tympanometry test - This measures the mobility of the eardrum. It is not a hearing test, but is valuable in determining if a loss is conductive. We know Aiden's loss is not conductive, but they still do this test to make sure there is no fluid in his middle ear that could alter any further testing. He was good to go.
• Acoustic reflex test (ART) - This measures middle ear function as well. Aiden's results were conclusive with his diagnosis of profound sensorineural hearing loss (SNHL). Go here to read more about this and the tympanometry test.
• OAE (otoacoustic emission test) - This test helps determine if the loss is sensorineural. We have had this before, but Tracy performed another OAE to verify the test results from our initial OAE. This verified again that Aiden's loss is a sensorineural loss (most likey damage to the cochlea) vs. auditory neuropathy.

Then, in between all of these tests, we were in and out of the sound booth for behavior testing. Tracy first tested Aiden without his hearing aids. I didn't have to wear earplugs, because she put the microphones right into his little ears. I was amazed at when she called his name & said her "BOP,BOP, BOP's", not only did he show facial reactions, but picked his head right up and looked around like "where is that coming from?!" That was at around 80-85db ... WITHOUT AIDS!!!! When Tracy would play the static sounds though, there were some responses around 100db, but no more then that. Remember, Aiden's ABR shows no response to 110db sounds!

The tests with hearing aids were the same with the last booth test. Aiden showed response to spoken sound at about 60db with lower frequencies, but with static sounds he was more around 85db. I compared those static sounds to a monotone professor ... how boring! And even if we can hear them, we drown them out anyway! This was the last testing we did, so he was pretty sleepy and ready to just go home.

All in all, his test results were how our audiologist expected them to be and conclusive with all past testing. He has a severe to profound sensorineural hearing loss in both ears. He is gaining sound awareness through his aids and we are on the path of him looking to be a great candidate for cochlear implants!!! It was a very exciting day at the audiologist's! Aiden did a wonderful job and I left giving a huge hug, shedding some tears, and an appt. to come back and discuss the different implants. I'd rather do it with someone I trust and adore than someone I'm just meeting.

Oh yeah, we got new ear molds made too ... we're going blue camo! I can't wait to show them off!

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!