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.