From Freedoms to N5s

Aiden finally joined the bandwagon and got the (not so) new Cochlear Nucleus 5 system (external) last week (they actually came out within the same year that Aiden was implanted, so they're about three years new and who knows when the next upgrade will be out). We were at a CI clinic who would not submit for an upgrade to the latest and greatest unless the current external equipment was five years old OR it could be proven that the newest equipment allowed for better hearing (which we tried and it didn't work). I get this and we loved our audiologist there, so we decided to just wait it out since his Freedoms were doing just fine. Once I found out though, they wouldn't submit for repairs with his Freedoms either (which were out of warranty), I had no choice but to switch clinics. (Yes, I could have bought the extended warranty offered by Cochlear, but why do that when our insurance will cover repairs/replacements at a cheaper cost ... I just needed a clinic who would submit the claim if anything did happen).

Anyway, it was very hard to switch as we love us some Dr. Rachel. Long story short, she has always went above and beyond for us and it was there that we finally reached a point of stable maps. She was also the one who completely stepped up when I called her from JTC in a tizzy, and said, "I want to try this phonemic mapping approach." As soon as we returned to Ohio, we did just that. She.is.ABOVE AND BEYOND.AMAZING. We are so lucky to have had her as part of our journey, but we had to move on.

BUT, before making the final switch, I called our local CI clinic and asked them if they'd consider the phonemic mapping approach with Aiden, if they wouldn't, we'd stay put. So be it, we met another amazing audiologist who stepped right up to the plate, worked with Dr. Rachel, and Project Talk, to understand this new phenomena of "out of the booth mapping". Our new audi got her whole team on board, including the team's AVT who came in and worked with us AS A TEAM to make sure Aiden's maps were up to par and that he was in fact hearing all sounds of speech (prior to the booth, in the booth, then after the booth). SIMPLY.AMAZING.

and I think this is one of his best maps yet.

OH, and the reason for this post, they submitted for the latest Cochlear N5s.

Some differences:

• much smaller (see pics below)
• Splash proof - he can wear them through sprinklers, in the rain, playing in a pool or in the bath, but cannot fully submerge his head with them.
• older recipients have claimed being able to hear ending sounds crisper with them. Aiden's teacher reported that he seemed more in-tune and chatty since he rec'd them.
• the controller is on the processor - so now it's just the processor, the coil, and the rechargeable battery vs the processor, the controller, and the rechargeable battery;
• the coil and coil cord are separate vs both together; this is good because if one is bad, you just have to pay for that and not both together.
• the processor has a tiny blue dot indicating the left ear and a red one for the right; so helpful t for siblings, grandmas, and friends (and mom & dad) to know which CI goes on which ear.
• did I mention they're smaller??!!! LOVE

Funny story - when they busted out the big ol' briefcase of choices, all Aiden wanted was the PINK CAMO covers.

{SMILE}.

I'm all about encouraging him to play with dolls and play house and all types of toys (in fact, his favorite is his little people house, which I LOVE), but sorry dude, not getting the pink camo covers for your new CIs. His favorite color right now is pink, which is just fine (Ryan always wanted to be the pink power ranger when he was four), but pink camo covers, not happening.

Let's move on. Check out the differences:

front view with Freedoms (and his first ever school picture)

front view with new N5s! you can't see them!

Freedom (minus snug-fit) vs. N5s (which he doesn't wear the snug-fit with since the ear hook is much sturdier and holds on better - we do still use the critter clip though).

Look how much more slender the N5s are

Such a difference! We LOVE them!

and yet to come (once I can get time to edit it), what Aiden thinks of his new CIs.

and for those who haven't switched or recently switched PLEASE NOTE!
We found out the hard way that the 1 magnet on the N5s can be a bit stronger than the 1 magnet on the Freedom. When I was washing Aiden's hair the other day he kept saying "it hurts" so I checked out his magnet sites to find one side was near infection and scabbed over and the other was a little red. I immediately put some Neosporin on the sites and called his doctor and audiologist. I then called Cochlear and they sent me the 1/2 strength magnet (another difference - Freedoms didn't have 1/2 strength), which I received the very next day. He hasn't worn the left CI for two days now as we wait for that side to completely heal. His audiologist told me that she has seen both cases, where the N5 magnet was stronger and on some it seemed weaker. Lesson learned for mom to check the magnet sites much more frequently!

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. 

Ten on Tuesday

1. Tomorrow we start another new AVT (auditory verbal therapy) adventure. We will still see Dr. Don every 2-3 months, but due to not being able to see him weekly (he's 2 hours away and if you haven't noticed, gas prices are CrAzY - especially with a SUV), we are starting weekly teleconferencing sessions with a new AVT and tomorrow we're heading to Akron so Aiden can meet his new friend and get everything set up. As Aiden said tonight, "It not Dr. Don." No buddy, not Dr. Don, but I'm sure it'll still be a lot of fun!

2. I am very excited to get this going. There is something about weekly sessions. I thought that once to twice a month would be okay, but there truly is something about the whole accountability thing. I'm really hoping the teleconferencing thing works for us, because between all of our kid's crazy schedules, this seems to fit in so much better.

3. To prepare for tomorrow's session with our new AVT, I made up a packet of information on Aiden, similar to the booklet I put together for our first IEP. I added in recent language samples, a chart of past language test scores, and all of his most recent evaluations (mainly from JTC). 

4. As I went through Aiden's audiograms and made copies, I couldn't believe how much he has fluctuated from map to map. At one point last year, he tested at 65 in the low frequencies! That's insane. His maps have had such huge fluctuations in the past two years, it's no wonder my baby is still behind expressively. We have had a pretty stable map about nine to twelve months now, but still not consistently at 20-25db across all frequencies as I'd like to see. He still drops to 35-40db here and there, hence the reason of seeing our audiologist every three months. 

5. He is still making good strides this year in all areas, but he definitely still has his off days. There are some days where he consistently loses his balance and those same days I can barely understand a word he says. Something's missing and I just can't put my finger on it. I voiced my concerns with his PT, SLP, and OT and all three of them agreed with me and suggested he be seen by a neurologist, "just to see and rule everything out" to make sure nothing else is going on. They all see both sides of him. So the referral was sent in and the appt made - for MAY. wow.

6. Do any of you/your children have a map with a higher pulse width? I don't fully understand it, but at Aiden's last mapping appointment (in December), a wider pulse width was needed to obtain NRTs on his right ear (which we've always had trouble getting NRTs on). His audiologist then proceeded to create and try out a new map with this slight increase in pulse width (increased to 37). As she adjusted it, Aiden was fine, but by the end he was burying his head in my chest and not liking it what-so-ever. We immediately turned it off and went back to square one (pulse width of 25) and adjusted based on phoneme repetition. Just curious. We go back next month for booth testing.

7. I LOVE this picture of my silly boy.

8. I CHERISH our "therapy Thursdays" together. We start out with an OT session and then the rest of the day is just ours. I really need to blog his OT sessions (and AMAZING therapist) - I have so much to share. We have noticed though that when he comes in with "slush mouth" (jumbled speech), within fifteen minutes of heavy work, he's speaking a lot crisper. He LOVES his OT and is quite the performer for her!

9. Took this picture of a beautiful sunrise the other morning from K's bedroom window. Bliss.

  

10. that's it. hope you enjoy your week. i will. i get two days with my boy ... tomorrow and thursday! As Aiden says, "No school tomorrow. Stay home mommy!" Ya buddy!!! i.love.it!

More "Out of the Booth" Mapping

I have so much to catch up on, I know, it's the story of my life, but for now ...

check out THIS POST by super mom Mel and her recent experience. Our stories are similar. Both our boys need frequent maps; both of us went through a long struggle of getting a stable map for our boys; both our boys SOAR from this out of the booth mapping.

Goes right along with our most recent "out of the booth" experience. Which by the way, continues to make a world of difference in Aiden's speech production!

and just a cute fall shot of my little monkey to end with on this rainy Thursday.

Happy Fall.

Out of the Booth Audiology

Here is a more detailed account of our recent "out of the booth" experience at the audiologist's.

In the past, Aiden's mapping appointments always started with him in the soundbooth - test lings, create audiogram based on his conditioned responses using pure tone audiometry (or sometimes warble tones), measure speech recognition (repeat for each CI separately, then together). Then head back to the audiologist's office and adjust CI programs based on new audiogram and parental feedback of ling checks, voice quality, spontaneous language use etc.

This appointment went more like this (I'll do my best to explain it, but let me preface by saying I am by far not a professional audiologist. I know enough about mapping to be dangerous and explain it to the best of my knowledge.)

• FIRST - changed maps based on Neural Response Telemetry. (background if you'd like: Aiden's implanted electrode arrays each contain 22 electrodes, each one delivering different loudness and pitch of sound to his auditory nerve then onto the brain. The NRT provides an objective measure of how his auditory nerve responds to the electrical stimulation produced by each electrode. This provides the audiologist with initial programming parameters.)
• I had learned from another audiologist that they typically see a common shape on the maps based on NRTs.
• Aiden's "old" map on his right CI was very similar to this said "commonality", and to his NRT.  There were no neural responses in the high frequencies (in which she calmed me down after a brief mom freakout and helped me understand that just because there isn't a response to some electrodes, doesn't mean he isn't hearing the sound - in fact on his right CI, there were only THREE responses out of the 22 electrodes. She reassured me that this in not uncommon and that older CI patients reiterate they still hear  sounds where electrodes show no response). So, based on our personal observations and his audiogram from JTC (30db@4000hz), she increased high frequencies too.
• For his left CI, there were more drastic differences in his old map vs. this commonality AND his NRT results, especially in the low and high frequencies. We did see a lot more responses across all frequencies from this NRT, which went hand in hand with this "common" map shape I was told about. His lows here were very sporadic and were made more "fluid" and the mid and high frequencies were both increased.

• AFTER, changes were made based on NRTs, we talked to Aiden about things sounding "too soft", "good" (thumbs up!), or "too loud", and we showed him a picture of monkeys demonstrating each. She would then bump up his levels, across the board, little by little. I was very apprehensive of this, as he is only 3 1/2 years old, and wasn't quite sure he completely understood what kind of response we were looking for. Low and behold, he seemed to be pretty on target instead of all over the board with just "choosing" whichever monkey. After a couple increases, he would immediately cover his ears and say, "it's too loud". Very small changes were made based on this. 
• FINALLY, she tested him based on his phonemic awareness that ranged across all the frequencies for each CI. For example, he had to imitate back /p/, /t/, /k/, /d/, /g/, /b/, /m/, /n/, /f/, /s/, /sh/, /v/, /z/, /ch/, /dg (j)/, /y/, /l/, /r/, /h/, /l/ and all long and short vowel sounds, including diphthongs. (all the sounds noted are listed as you and I know them - not as a speech pathologist writes them ; ) )
• With his right CI, he repeatedly imitated /k/ as /p/, /f/ as /s/, and /g/ as /d/. After making a few adjustments, he said each one pretty darn perfect.
• With his left CI, he repeatedly imitated /f/ as /p/, /g/ as /d/, /p/ as /t/, /k/ as /t/, and he was very closed mouth with the short i and e. Again, after adjustments, he was saying each one beautifully!
• /v/ was hard on both sides and we couldn't get him to imitate it, but at one point he was pretty close. We also could not get him to reproduce /n/ for the life of us (kept reproducing it as /m/; they overlap each other on the speech banana), but he does not seem to confuse them in his speech (besides the word "milk", which he says "nilk"), which we'll keep watching.

After all this, we would ultimately bring him to the soundbooth, but after two plus hours, he was spent. We are heading back in two weeks for a new audiogram. I can say though, that the days following, I'd sporadically ask him how things sounded, and before I could get out the choices of too soft, good, or too loud, he'd throw up his thumb and tell me, "good!"

During the whole appointment, my little monkey entertained. What cracks me up is he knows he's funny and laughs at himself. A few times throughout, his audiologist would cover her mouth and tell him to listen, and before she could get anything out, he'd yell out, "ah, oo, ee, s, sh, m" then laugh and laugh. Or she'd say a letter sound, and instead of imitating it back, he'd tell her what letter it was, then laugh some more.

Little stinker.

After four days with his new map, I still see very good changes in his speech, but he still sounds very jumbled when putting more than two or three words together. Even though his technology definitely needed a good tune-up, he still has motor planning challenges, which is why we will continue on strong with OT. As Aiden strengthens and overcomes his praxis challenges, we should also start to see an increase in his conversational speech. I think this is going to be a GREAT year for him!

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"!

HUGE THANK YOU TO AIDEN'S CI TEAM

How do you show SINCERITY

to a team of individuals

who have given you

something you will FOREVER

be grateful?

How do communicate appreciation to

amazing professionals

who provided your child with

something that will IMPACT his

life forever?

What can you possibly give someone,

whom you respect and admire

beyond words, for all their

hard work, DEDICATION, and care

to your child?

How can you possibly show all this to

a phenomenal team that has provided

your deaf child

THE CHANCE TO HEAR?

We gave them many, many thank you's,

a big ol' cake, huge hugs,

and bittersweet tears.

We also give them

OUR PROMISE:

to not take Cochlear Implant technology

for granted, knowing

it's not a "simple fix"

but a continuous WORK IN PROGRESS.

there will always be challenges.

to fully commit ourselves to face

these challenges head on,

to not give up and know, no matter how frustrating,

they CAN BE OVERCOME.

to know that you gave him the "tools"

to hear, and now it's up

to us to PROVIDE EXPERIENCES

and proper therapy to use this

hearing "hardware and software" to open up

a world of hearing and spoken language.

to "PLAY" with Aiden everyday

enriching his mind with

language and listening opportunities.

to appreciate and respect all the

sounds our world has to offer and to

TAKE THE TIME TO STOP AND LISTEN,

as each moment is an opportunity to learn.

to EMBRACE this journey for

the miracle it is,

and walk hand in hand with Aiden

and cherish every single SIMPLY AMAZING moment.

as without the technology of

Cochlear Implants,

without his amazing surgeon, Dr. Niparko,

audiologist, Miss Jill, and team of therapists,

this all wouldn't be possible.

Our GRATITUDE to our surgeon, our audiologist,

and the whole support team

at Johns Hopkins Listening Center

is beyond anything that words or a cake can say.

We THANK YOU from the

bottom of our hearts,

for providing our son with

the chance to hear.

WE WILL MISS YOU!

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.

Next Steps After Concerns ... and a little "h"

After posting my concerns about Aiden's standstill I received a lot of great feedback, so first let me shout out a huge THANK YOU! All my CI mommy friends rock and it is so nice to know there is support/words of encouragement/advice out there from those who have been there done that! Second, these comments confirmed my inner mommy concerns, so I scheduled a meeting with the audiologist at Aiden's school for a second opinion.

The audiologist here did reassure me his audiogram was not bad, but that if he was in the 15db to 20db range, across all frequencies, that dropping to 25-30db, was something to definitely recheck. She also mentioned that she doesn't like to see anything less than 15 db as sounds can become distorted any lower than this. She's going to take a look at his maps (programs) and test him in the soundbooth. I love this place.

The school's OT also joined our meeting as they have concerns about Aiden's muscle tone and the fact that he's the only one in his class who is still not walking. They're not overly concerned, but want to evaluate him more and work with him to help him along.

Aiden's sister was a late walker, but her pediatrician was never concerned. She also never crawled, she walked on her knees to get around ... also, no concerns. What I've learned is that skipping the crawling stage can hinder fine motor skill development and muscle tone for years to come. To this day Kailyn's handwriting is not that great, her muscle tone is weak (she's in gymnastics to help this), and even the muscles in her eyes are weak (we just increased her glasses Rx for the second time in 6 months). I wish I had known then what I know now. I'm sure she would've qualified for OT services and there's a good possibility she still may. Just another battle I'm working my mommy magic on.

Anyway, I say all this because if this is a service Aiden's school provides and Aiden will benefit from it (even though this is something else we have to add to our plate of craziness), we're definitely going to take advantage of it. Again, love this place.

I have to say my concerns for Aiden aren't that he's not doing well. I believe my little man is doing a wonderful job with his CIs and coming along beautifully. But I feel we're stuck and I am truly concerned about his map. I need to validate if my concerns are right or wrong. If they're right, we'll get it fixed and move on. If they're wrong, then I will see what I can do differently and continue to work hard on next steps.

My main concerns are:

• Aiden's not using the /oo/, /ee/, /s/ or /sh/ in any babbling or words. Nothing. Nada. Nilch. (I'm not as concerned about the /sh/ and /s/ as I know these come later). We work on them all the time - owls, cars, ghosts, etc. Yes he responds to them by pointing at his ear when I Ling check him, but who knows if he's really hearing the /oo/ and /ee/ like it's supposed to sound. I'm going to talk with his SLP about this more and get her opinion on it. Maybe it has something to do with his oral motor skills?


• Why aren't his maps ever tweaked? Right now we've been going in every three months. There hasn't been one change to any of his maps since the beginning of May.


• Why has he dropped so many of his words? I'm hoping it is because he's been trying out walking more. Many of you confirmed my standstill concerns and said that your children definitely have them, but again, with his most recent audiogram, I can't help but wonder.

To end, I have to share a recent video of my little monkey. All these concerns, and then he does this. Here he is showing off his mouth parts and demonstrating his progressing "h" sound (which he picked up by me saying "hot" every morning as I let him feel my coffee cup).

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.

Tiring Week ... but He's Bilateral!

Our binky boy is now bilateral! He has both his "ears" turned on. I wish I could type this all with more excitement and happier emotions. It's just not there, not right now. Don't get me wrong, I feel so blessed that we live in today's age where my child has the opportunity to take advantage of such wonderful technology; I thank God everyday for Aiden and what he's brought to our life. But truth of the matter is, this week has brought tears, struggles, and heartache.

I'm sure a lot of it has to do with the lack of sleep I've had all week. Aiden's been sick and not his usual animated self. At his activation, his audiologist checked his ears and they were all clear. That night his fever spiked to 101. I blamed it on teething, because his fever went away. When nighttime fell again though, we started the sleep fight all over and after today's dr. appt. and 101.8 fever, we confirmed the ear infection made it's way through.

Anyway, for the first time in a long time, I cried. I cried seeing all this equipment on my son. I cried thinking about how I shouldn't look at his CIs as all this "equipment" but as the miracle they are that allows my son to hear my voice and all the beautiful sounds this world has to offer. I cried at the fact that as long as he wants to hear, he will always have to wear something on his ears ... this isn't a quick fix ... this is for life. I cried because my son is deaf and I hate it.

Not really.

Well I do, but I don't. Clear as mud? Of course I wish Aiden didn't have to go through all of this. Of course I wish Aiden didn't have to wear all this "equipment" to hear, having to crawl around with all these wires hanging off of him, ripping off his "ears" as he tries to crawl, me constantly behind him putting an "ear" back on. Of course I wish that I knew that he was going to be okay and that I could protect him from kid's mean words and adults staring, and all the therapy, and appointments, and hard work he's about to go through for many years so he can learn to listen and speak. Of course I wish I could hear Aiden babbling, saying mama and dada, and nonstop chit chatting that one years old do, when all he does right now is grunt and moan. GRUNT and MOAN. He was babbling more with his hearing aids. Every once in awhile now he lets out a mixture of sounds and I just savor the sound of his voice. SAVOR EVERY BIT OF IT. But it's very far and few in between right now. Of course I wish we weren't back to square one again.

Of course I wish AIDEN WASN'T DEAF.

But he is.
and it sucks ...

... at least for this week. and maybe next. I truly haven't had a moment like this since this day just a short month and a half after we found out Aiden was deaf. I think I've just been going so nonstop focusing on preparing him (and us) for the CI world. Staying positive ... moving forward to our new world. I have to remind myself, it's okay to have days (or multiple days in this case) like this. Obviously there's no changing who he is and honestly ...

I WOULDN'T CHANGE HIM FOR THE WORLD!

I truly wouldn't, except that he would be able to hear. Honestly. Yet I know he is who he is and he's brought so much to our life. God blessed us with three beautiful children, and for some reason, chose Aiden's daddy and I to raise each of them. So even with all my tears, all my sorrow, all my wondering why, I am so happy he has blessed our lives. I know he's going to be okay.

Just watch. His personality, his determination and his fight (that is fighting mom trying to put on those damn processors on his ears ... man it's such a fight) reminds me everyday-this kid's going to be just fine. It's just been one of those weeks.

Here's his left ear activation video. Here's my baby ... my deaf baby listening with his left ear for the first time. (turn off the music on the right. And sorry about the wobbly video taking ... I don't have a steady hand like Aiden's daddy when it comes to video cameras!)

I am having trouble with Overstream to caption this right now. There are only a few beeps here and there and then at the end, Aiden's daddy is talking to him about the pop up toy as we watched for voice responses.

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!