Aiden's Magazine Debut

Last year we were asked by Dr. Niparko to have Aiden be a part of a National Geographic photo shoot during his CI surgery. The magazine was putting together an article on Bionics, and approached Dr. Niparko to learn more about the "bionic ear". Part of the process included having a photographer come to our house to get to know our story and take many, many pictures of our little man before sound was a part of his life - they were awesome with Aiden. They also took many pictures during his surgery (which I have chosen not see - yet) and came back to participate the day of his activation to capture his first sounds on video and camera. We were hoping to have more coverage on cochlear implants in the magazine than what was written as we are always trying to help educate the public or newly diagnosed families about CIs. All in all though, it was a terrific experience and HOW EXCITING to see our little man in one of the most well known magazines throughout the world!

The whole article is very interesting. It's amazing how bionics are helping people do things they once did or, like Aiden, never would have had the possibility of doing. The article is also online here along with some additional pictures that won't be in the magazine (click on Aiden's picture to bring you to the photo gallery and then click on each picture to read it's caption underneath). You can also pick up the January issue soon and see two full pages of Aiden - one of his xray after his surgery and one of him wearing his CIs about six months after surgery.

'Tis the Season

I was up VERY early this morning ... 2:30 to be exact. I tossed and turned thinking about our upcoming move and new house, appointments I need to get the kids to (and make), Aiden's map and why he's been making that whiny noise all weekend, what we still need to do to close on our home, HOW we're going to do this move just a couple days AFTER Christmas, how are my kids going to adjust in their new schools, we need to get family pictures taken, oh, but Aiden and Kailyn need a haircut first, blah, blah, blah ... all going through my head.

What a whirlwind.

At 4:45am I finally decided to stop fighting the demons in my head and the want to sleep and got up, made some coffee, and pulled out my planner/pen to write my daily list of to dos. I decided to put it away though and instead enjoy the PEACE and QUIET in the house, and the GLOW of our Christmas tree lights in the darkness.

It's Christmas time. My FAVORITE time of the year. Time to kick those voices out of my head and let the stress go. Things will work out, they always do. It's time now for baking cookies, singing Christmas songs, playing in the snow, watching Aiden's eyes light up everytime he sees Santa Clause. It's time now to sit back and enjoy all the magical moments this wonderful season is all about.

Hope you do too.

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!

Thankful

Everyday I thank God for the life I have ... three healthy full of life children, a fantastic husband, parents who love me, shelter, food, etc. I am truly blessed. At this time of year though, I like to take a deeper look at what I'm thankful for, what I've been blessed with.

The Opportunity to Move - When we moved to Maryland, we knew it wasn't for good, that it would be a small chapter in our book of life. Well, we're about to start a new chapter. Aiden's daddy has been promoted and we're moving back home to the Midwest! We will be so much closer to family and friends and I cannot wait! The opportunities this move provides for our whole family are tremendous.

Memories - This time of the year is very hard for me. It seems like Thanksgiving two years ago was my father's last "good day". It was after this that things spiraled downward and before I knew it, his time to leave us and join his parents in Heaven had come. But this year, after a good healthy cry, I took a step back and smiled. I'm so thankful for all that he taught me, for all he was to me; so thankful Ryan and Kailyn got to know their grandfather and that he will always hold a special place in their heart. Thankful for the memories ... and the smiles these memories bring.

My Husband - We have been married for fifteen years and he is truly my best friend. He makes me laugh, he is my strength when I am weak, my confidant when I need to let it all out, my partner when making tough decisions, my everything. He works very hard to provide for our family which also allows me to stay home with Aiden. I miss him by the end of the day. For all he is and the unconditional love he gives, I am so thankful.

My Parents - A lot has gone on in our lives the past couple of years and without the lessons my parents taught me growing up, I don't know if I'd be as sane as I am today. One of the biggest lessons they taught me was to cope, not to run and hide. But even more so, to have faith, because even when it seems it can't get any worse, it will, BUT things will get better. And they do. Head up, open up that heart and mind, and face those "opportunities" head on knowing the good Lord above is right there beside you (and so is mom)! Thank you mom and dad ... for you two I will always be thankful!

Cochlear Implants - Of course I'm thankful for these every.single.day. I can only imagine how different our life would be without them. Yes, we'd learn ASL and we'd learn how to communicate in a different way than what we've ever known. It wouldn't be easy, but we'd do it. Because of CIs though, we don't have to. Aiden has been provided with a technology that gives him the choice to hear and therefore speak. Our deaf son is hearing all the beautiful sounds our world has to offer, hearing the laughter and sweet nothings from his family. And for this, I am beyond thankful.

A Happy Heart - smiles and laughter and hugs and kisses from my kids + memories + girlfriends nights out + in laws I absolutely adore + the purring of my cats + a niece or nephew on the way (finally on my side of the family) + the best grandparents + love all around + a ridiculously funny husband who loves and supports me very much and is my best friend + my amazing mom + the sound of my deaf son laughing and speaking + a nice glass of wine ALL EQUAL a HAPPY HEART ... and for this I am truly thankful.

and last but not least ... I am thankful for Aiden finally walking more than crawling, which will help me get less packing done for our move, and "Elmo" who is a huge help, especially while trying to pack!
(make sure to turn the music off on the left)




Hope you had a wonderful Thanksgiving.

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.

the Good, the Bad, and the Ugly

the GOOD Aiden has added new words to his vocabulary list! He now says "meow" (without the /e/, so more like "mmmmow"), "hah" (hot), "buh, buh" (boat), "dah, dah" (duck or quack), and "En" for his classmate Ben.

He has even attempted to say his own name, is sounds like "Ay-en"!

Aiden continues to try to walk. He's going further and further, but just is not taking off. He can walk clear across the living room, will look at us, then fall to his knees. Frustrating but good that he continues to try.

He is trying to blow ... bubbles, a piece of paper across the table, my hair, anything. We've been working on this to help him with his "oo". It's hilarious! He either lets out a big ol' raspberry or has a wide round mouth blowing out, like sounding out the letter h.

He is trying to imitate us more, but mainly just the number of syllables. For example, for banana, he will say "ah-ah-ah" or pumpkin (and open and many other two syllable words) he will say, "uh-um" or "ah-um" and with each one he inflects his voice.

He's trying out /p/. I have been working on p since last summer! He's been saying "uh, uh, uh" (up, up, up) for some time, but I've heard it with that /p/ a few times now. We've been blowing a lot of bubbles lately too to help that /p/ POP!

His receptive language is growing. I really need to sit down and write a list.

He doesn't cry anymore when I drop him off at school! He smiles! This is HUGE!

the BAD Aiden is still stuck on the same consonants and same vowels. We have m, b, d, and sometimes n (although it seems we've lost it). Then put these with the his vowels of "ah" and "uh", and so consists his vocabulary list.

Even with all the HallOOwEEn sounds of /oo/ and /e/, still nothing. For /oo/ we get a deep, nasally /m/ and for /e/ we get that gasping for air sound.

Buh-buh (bye-bye) is just that and has been replaced with da-da. No clue.

We've completely lost the long o and long i that we'd hear every once in awhile.

The only Lings he'll use are /ah/ and /m/. Period.

He's still on the bottle. This is supposed to be only right before bed, but when Aiden wants a bottle he goes into the fridge, climbs up, and gets his own. I often find him sitting on the couch drinking his bottle. We had to put a lock on the fridge.

He's still not walking.

and the UGLY

Terrible twos 6 months too early ... the boy is out of control.

He's stopped sleeping through the night. Again.

He screams. Either a deep throat gurgly all out "AHHHHHH" or a shrill high pitched "AHHHH". His AVT thinks it's the boy in him. I'd like to take this part of the boy out of him.

We're working on the term "inside voice".

He's still not walking.

I have to say though that my little monkey makes me smile all.day.long. He has such a great personality, so much spunk, is such a little comedian, and truly is always happy (even when he is screaming, he laughs at himself when he's done ... he thinks it's funny ... I don't).

So there you have it ... so glad the "good" list is longer than the others! Although I have concerns with his expressive language and his maps, I do believe he's doing amazing. I look at him everyday and can't believe my baby is deaf. We have an appointment Wed. with our Hopkin's audiologist to hopefully clear up these mapping issues ... hope this adds more to our good list!

Halloween Fun

HaPpY HaLLoWeEn!!!

We started our festivities with a little bit of

pumpkin carving, or as Aiden calls it

"uh-un".

Ryan was feeling "too cool" to help out,

Kailyn ran the other way after a couple handfuls of goop.

but Aiden sat alongside daddy,

helping out the whole time!

TrIcK aNd tReAt!!!

We started our day making a bunch

of yummy Halloween treats.

Cupcakes, orange Rice Krispy Treats, and of course,

caramel apples!

Kailyn was my little chef, head of the kitchen

while Aiden cleaned up the mess. After taste testing all our yummies,

the kids got all dressed up to

go collect even more sugar!

Aiden's sister was a "good" witch,

which she reminded us of many times.

Aiden's brother put on his Yankees

jersey and hat and was an

instant baseball player.

Then there's my little monkey,

whose costume fit him perfectly,

in more ways than one.

(actually sitting in his stroller)

When we got home I went to change

and my little monkey immediately headed

to his favorite place - his sister's room

to find his own monkey business,

aka - up to no good.

The costume was definitely a good fit.

All in all, we had a

SpOoKtAcUlAr EvEnInG!

Hope you did too!

Walk4Hearing

The Walk4Hearing was this past weekend in DC. This is a walk produced by The Hearing Loss Association of America (HLAA) in an effort to end the stigma associated with hearing loss and provide support and resources for hearing loss prevention and education programs. The Honorary Chair for the DC walk was Reed Doughty, Washington Redskins #37! You can read about his journey with hearing loss here.

We joined Aiden's school's team a few weeks back to help raise money not only for the HLAA, but also for his school. Christian's mom started this team last year and so we jumped on the bandwagon this year to help raise money for such an important cause. I have to shout out that our team had two of the top earners of the entire walk (YAY Stephanie and Tina!) AND was the number one fundraising team raising over $8,000, with half the money raised going directly to our children's school! WAY TO GO TEAM!

This would have been our first walk ever, but we were home sick with the flu (hence, no pictures)! ICK! I was so bummed we could not make the walk, but with our temperatures finally under control and still not feeling too great, I couldn't risk taking Aiden out in the 40 degree rainy damp weather. I could barely make it up and down the stairs carrying him, I doubt I would've made it the short 3.1 miles. Needless to say, I was VERY, VERY bummed, but I look forward to the next one! I heard regardless of the weather, there was a great turnout and the DC Walk4Hearing surpassed their total goal!

THANK YOU! THANK you! thank you! to all of you who made a donation in support of Aiden and helped us make this walk a success for such an important cause! It feels SO good to help give back to Aiden's school and the HLAA, both of which have been tremendous resources in our journey to help Aiden hear! Your generosities are truly appreciated!

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).

Apples and Leaves

Sometime ago, I said I wanted to post on Aiden's blog the particular theme we're working on. I'm finally getting around to it and I'll start with what we're doing now then go back as time allows and post the others. I hope to keep these up as a recurring post everytime we start something new. This is good documentation for Aiden's journey, but I hope it helps others too. If you have anything to add (activities, songs, etc), please leave them in the comments section for all to see!

With fall in the air, what a better time to work on the two things that remind me most of this beautiful season - apples and leaves. We started with apples/fruits about a month ago, but added in leaves. We're slowly moving on to pumpkins/Halloween for our next theme.

Theme: Apples and Leaves

Vowel Variety: oo, yum, oh, wow, up, down, fall, ah, pretty

Functional Words in Phrases: cut, peel, more, bite, crunchy, smooth, down, uh-oh, eat, pick, pour ... etc.

Activities:

Play farm/store/baby with apples

Cut up an apple and look at the core, seeds, stem, apple slices

Use half the cut apple and apple slices, dip in paint, and press onto paper.

Make an apple pie and/or apple butter

Go apple picking and/or visit a Farmer's Market

Separate the apples or leaves into big and small

Go on a walk and watch the leaves fall from the trees and hear them crunch under our feet

Play in a pile of leaves talking/singing about throwing them "up, up, up" then watching them fall down, down, down and hearing them "crunch, crunch, crunch".

Collect all shapes, sizes, and colors of leaves then bring them home to use in song play, books, arts/crafts, etc.

Print out apple/leaf clip art to color

and ... climbing trees with dad

Books:

• Up, Up, Up! It's Apple Picking Time, by Jody Fickes Shapiro
• Apples, Apples!, by Salina Yoon
• Apples, by Gail Gibbons
• Leaves, Leaves!, by Salina Yoon
• Leaves, Leaves, Leaves!, by Nancy Elizabeth Wallace
• It's Fall!, by Linda Glaser

Songs/Finger Plays:

Falling Apples (to the tune of London Bridges)
This is Aiden's favorite song for both apples and leaves (just replace apples with leaves) I use real leaves and real apples and do the motions as we sing.

See the apples falling down,
Falling down, falling down,
See the apples falling down,
Down to the ground.
Pick the apples and throw them up,
throw them up, throw them up.
Pick the apples and throw them up,
Up to the sky

Applesauce (to the tune of Yankee Doodle)
Peel an apple, cut it up
Cook it in a pot, When you taste it
You will find, it's applesauce you've got!

Apples/All the Leaves are Falling (to the tune of Are You Sleeping?)
Apples are falling, apples are falling,
From the tree, from the tree.
Pick up all the apples, pick up all the apples,
One, two three. One, two, three.

Five Little Apples (similar to Five Little Pumpkins or Five Little Monkeys)
Five little apples hanging on a tree
The farmer didn't care
So guess who came to eat?
A caterpillar! Munch, munch, munch!
Repeat four more times using a different animal
(again, I use real apples and leaves and whatever toy animals/puppets I have. It's a lot of fun singing this with the names of people in your family too!)

We sing all these songs with props and Aiden is very active in it. He likes making the animals eat the apples and the leaves or picking up the leaves and throwing them in the air! Another idea is to use a felt board if you have one and use cut out felt apples and leaves.

With this theme, he's voiced apple a couple of times. I don't even know how to spell how he says it, but it's more of just the vowels "a - le" without too much of the /l/. I just can't get him to say that dang /p/! Whenever he sees an apple he does say "mmmmm" and rubs his belly! When I ask where the leaves are, he'll look up in the tree or throw his hands up.

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.

Welcome to Holland

When I first met Miss Helen (one of Aiden's first AVT's) she told me about the poem, Welcome to Holland. Whenever I read it, it reminds me of how in the beginning I really wanted to be in Italy, and still, on not so good days, would rather be there than "Holland" too. Believe me, I truly wouldn't change Aiden for the world and this journey is so amazing, but fact of the matter is, it isn't always the easiest, and there are days I want to give up, crawl back in bed, ignore it all, AND get back on the plane and demand they take me to Italy - NOW. Today was one of them. But I don't. I can't. Those precious baby blues, big ol' smile, and sound of "maaaaam" keep me going. Who could resist?

Then I get a phone call. I received a call tonight from a mom in Texas whose sweet baby girl didn't pass her newborn hearing screening. She's now five months old, has been wearing hearing aids since about six weeks old, is in AVT, and well on her way. We talked about the devastation felt when hearing the words "didn't pass", the "friendly", yet very awkward remarks on how "things could be worse" from family and friends, the "I'm so scared" of what's ahead. This is what I wanted from the get go ... to help newly diagnosed families in any way possible-it's what I love about this community of "friends". So, I emailed my new friend some resource links, some blogs to look at, and a big hug. Tomorrow I'm sending some pilot caps.

Then I thought about this poem and wanted to share it too. Even when first read, the thought of not being in Italy was stomach turning for me, but is Holland truly that bad? I've found not. In fact, I've found Holland to be just as beautiful and rewarding, it just took me a little bit more time to realize what a great trip it truly is.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

18 Month Mommy

Aiden had his eighteen month well baby visit yesterday.

As I sat there waiting I couldn't help but reminisce

about his two month well visit.

The tears welled up in my eyes that day,

sixteen months ago,

as I watched a toddler play in the waiting room.

I pictured Aiden at this little boy's age

(who was about 12 to 18 mths)

and all I could picture was all this equipment.

I tried to shut my mind off, but it wouldn't.

I wondered if he'd be as outgoing as the little boy

toddling around, babbling to his mom as happy as can be.

I thought about the possibility of Aiden not babbling,

and my heart skipped a beat, as if I couldn't breathe,

I was scared ... very scared.

I will NEVER forget that day.

That day I hated that my baby was deaf. Hated it.

I left the office feeling very sick to my stomach, tears rolling down.

Aiden at 2 months

Fast forward to yesterday. and my experience,
as the mom in the waiting room with an 18 month old,
with "that equipment" we now can't imagine him without.

We walk in and Aiden immediately starts squiggling

and says, "owwwn" for me to let him down.

I sit down, and Aiden hovers by my legs

playing shy in front of another mom and her daughter.

My monkey then climbs up on the seat,

saying "maaaaam" as he lays his head

on my shoulder still playing shy,

then decides he needs to show off instead

and gives me a nice whack on the head

as he yells "ow!" laughing out loud.

Continues to show off as he does a nose dive over me

to get a magazine with Halloween pictures on the cover.

As I try to talk to him about the pumpkin and the ghost

and the spiders, he yells,"ah da" (all done),

rips it from my hand and throws it on the floor.

then proceeds to try and climb up the seat

and onto the window sill ...

that's when the nurse came to call us back

thank God.

The nurse brings us back to the room, and

when she's done, says, "bye-bye Aiden!"

So Aiden waves and then blows a kiss

with a big ol "mmmmua"!

And I was worried.

Aiden at 18 months

and just for the record, his stats:

• 27 pounds 4 oz vs. 12 pounds at 2 mths


• 33 inches vs. 23 inches at 2 mths
  
• 50 cm head circumference ... and I only put this here because I had to laugh at the fact that his head size is in the 95th percentile!! Oh my boys and there noggins!

Good with My Bad

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

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

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

I can't help but think:

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

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

Then I remember:

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

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

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

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

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

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

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

The time to enrich his mind is now.

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

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

- He's starting to imitate more

- He's becoming more observant and vocal

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

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

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

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

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

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

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

But he does. So we forge forward.

I wish I was as strong as he is.

He truly is one amazing little boy.

Just Like a Cat

Just wanted to share a little video we captured the other night of one of Aiden's newest acts - it's hard to hear, so you have to turn up the volume as he imitates the cat drinking from the water dish (and make sure you turn off the music to the left).



Outside the fact that this makes me laugh out loud, I love it for many reasons:

1. I need to put the cats' bowls up because Aiden tries to eat from them instead of dump them all over like he used to.
2. He's showing the beginnings of imaginative play.
3. He's hearing our cats eat/drink and therefore imitating the sound and actions they make!
4. At the end, he totally reads his dad's lips (his dad is not signing, yet Aiden signs back his version of cat) ... not that I LOVE this as we don't emphasize lip reading, but isn't it amazing how he's already teaching himself to understand what's being said when he's without his CIs (he had just gotten out of a bath).

and when the cat bowls are up, Aiden will dump his snack bowl on the floor, get on his belly or all fours, and eat up his snack like a dog or cat would. Oh if he would only say "meow" or "cat" now!

Mom of the Year Award ... I Think Not

Okay. So yesterday I started off my day by helping Kailyn's teacher for a good hour or so, then hurried home to get Aiden ready for therapy. As I am driving down the highway, rushing, as always, to get to where we needed to be, I realized I truly did not want to go.

It's at 11:30 and the time just.does.not.work. BUT, it's the only time that's available right now, unless I want to take a late afternoon appt. and guess what, I don't. The drive is already 30 to 40 minutes, and although Aiden's missing his morning nap, not getting lunch until we get back, I feel the need to be home for my third grader when she walks through that door. I hate it for Aiden, yet she's still too young to come home to an empty house. Not happening. Not yet.

As I'm driving, I am feeling out of control with so much to do. Have to go here, need to do this, can't believe I forgot to rent Kailyn's violin since practice started TODAY, does Ryan have lunch money, we need milk, and I'm feeling like a crazed, frantic mom with a to-do list a mile long when all I want to do is go home and play with my little monkey ... or maybe not ...

because truly, at the moment, all I wanted to do was drop Aiden off with his dad at work and go have lunch on a patio with some good wine, good food, and good friends. Now that's a good stress reliever. BUT, back to reality, NOT HAPPENING.

So as I'm driving, I'm thinking of all the things I didn't get done/things I needed to do and just start laughing. We as moms put so much on our shoulders to be PERFECT. Perfect for our kids. Perfect for our husbands. Perfect for our parents. Perfect for our friends. Perfect for everyone but ourselves. When is the last time you truly did one good thing for yourself EVERY.SINGLE.DAY.OF.ONE.WHOLE.WEEK ? Okay, that's a lot to ask, so how about at least one day in one week?

Moms tend to take care of others first and themselves last. Then throw in one or more of any of the following: having more than one child, having a child with special needs, working full or part time, being a single parent, taking care of a parent(s), etc. etc. AND not to mention, whatever personal problems that may arise. I know I am just worn out by the end of the day. Why is this? Truly, if we took care of ourselves first everyone would be a lot happier, because mom would be happier. Right?

When I got home, I did myself an injustice and looked at my schedule for the next week and wish I hadn't. I had to let it go. So I went and poured myself a glass of wine.

That's when I realized I seriously need to start scheduling in some "ME" time ... and not just saying it, but actually writing it down on those great white board calendars for everyone.in.the.house.to.see. Because you know, if I'm going to get that "mom of the year award" (NOT), I better take care of me first.

Well, then fast forward to tonight. Hmmm, far from perfect.

Aiden's older brother had a baseball game. This place was not close, and in an area I've never been. This meant getting there, to say nicely, sucked and was very stressful (even with Miss GPS aka Miss B&*ch). On top of it all, Aiden's daddy had to work and I knew by the time I got home it would be too late for baths. So, here I go again, rushing to get homework completed, dinner done, baths over, on the road (realizing half way there that Aiden was missing a CI - oh the stress) and back home three hours later only to realize,

I fed everyone...

BUT Aiden.

Do I still get a trophy?

First Day of School for My Little Caterpillar

Yesterday was Aiden's first day in the toddler program at The River School! They have two classes for his age that meet on Tuesdays and Thursdays, and he is in the Caterpillar/Butterfly class. I've already said it, but I just can't say it enough, this school is AMAZING! Now, I think I may be a little nutso for taking him here, because to get there, which is 37 miles from our house, took over TWO HOURS ... with the last four miles taking a good half hour! I obviously need to find a new route because that's just pure insanity. The drive home was MUCH better though and we were home within 45 minutes. So, needless to say, Aiden was late for his first day ... oh well, we'll get it down.

On our way to school!

Aiden's cubby with the caterpillar he colored at the teacher's homevisit.

Aiden had a wonderful first day! For the last week, we've been talking to him about school and showing him pictures of his teachers, the classroom, and the playground to help prepare him for the transition. Once in his classroom, he immediately wanted to get down and play and from then on, he didn't look up more than twice to see if we were still there. He was good to go. His speech pathologist told us he cried a total of five minutes for the three and a half hours there. Pretty good for a boy who's never left his mommy's side!

"I'll be just fine mom and dad!"

Snack time!

I LOVE to draw!

Here's what Aiden did on his first day (per an email from his teachers, which we will receive each day detailing specific activities from class):

• Sensory Table - Use cups to scoop and pour colored water.
• Circle Time - Teachers will introduce our name song and we will meet a caterpillar and a butterfly puppet.
• Dramatic play/theme - We will play with caterpillar and butterfly puppets and pretend to feed them the food from the story of "The Very Hungry Caterpillar".
• Art - We will use dot markers to decorate caterpillars for our classroom window.
• Books - "The Very Hungry Caterpillar" by Eric Carle and our class book, "Caterpillar, Caterpillar, Who Do You See?"
• Mouth Time - We will have fun with bubbles and introduce our Mouth Time character.

The day ends with some fun playground time!

Aiden was very excited to see us at the end of class. After his daddy picked him up, he took one look at his teachers, waved bye-bye and blew them a kiss. The boy was ready to go. He was asleep within five minutes in the car. They wore him out!

Oh, and a lot of these pictures of him throughout the day came from his teachers to us in an email, detailing Aiden's first day! Did I tell you how excited I am for my little monkey?!?

Thankful

Lately I've been writing about our goals, our workboards,

what we're doing to help Aiden speak and hear ...

but today, I just want to say

I am THANKFUL.

THANKFUL for

his never-ending laughter,

it truly is contagious.

the way he says,

"ma-ma-ma-ma-ma" and "daaaad"

the kisses he gives

as he puts one hand

on each of my cheeks,

when asked for a kiss.

belly laughs at hearing the simple whisper of "t,t,t,t,t",

because he knows a tickle session is on its way.

the constant gibber gabbers and pointing,

like he's talking to everyone

and everything,

whenever we're out for a walk.

"MMMmmoooomm",

when he wakes up each morning.

the way his eyes light up,

when he discovers a sound,

then smiles so proudly.

his curiosity
to explore the many different sounds

our world has to offer.

the way he wrestles with his brother and sister,

screaming and laughing.

the excitement he shows

when he hears the simple words,

"let's go bye-bye."

how he races his cars and trucks,

"bbbrrrr, bbbrrrr, bbbrrrrr"

such a boy.

the mischief he gets into,

then crawling away

as fast as he can, laughing

as he hears me walk into the room.

Everyday I am thankful for

Cochlear Implants,

Professor Graeme Clark for inventing them,

and all the beautiful sounds

my little monkey

can hear because of them.

This journey is amazing.

simply.amazing.

and everyday I am thankful,

that God chose me,

to be Aiden's mommy, and to walk with him,

hand in hand, on this wonderful journey.