Our hearing journey continues!

* Disclaimer: I am by no means an expert on cochlear implants, these are simply my observations as a mom. Additionally, every family dealing with hearing loss has a different story and circumstances. These are ours.

Where to start, where to start...

Since moving to Dallas, we've been working with the fine folks over at the Callier Center for all of Milo's audiology services. Milo also goes to preschool there, thanks to Grandma Jan and her connections. (She's the director of clinical education for the graduate program at Callier. A speech-language pathologist whose grandson has hearing loss - go figure! )

Every once in awhile, someone in Milo's support team (audiologists, teachers, speech therapists, etc) would mention the possiblity of him being a candidate for a cochlear implant, but we never thought too much of it until the hearing in his right ear fell to severe-profound. His left ear is at moderate-severe loss. Shawna, his primary audiologist, referred us to the Cochlear Implant (CI) program at Children's Medical Center here in Dallas.

Gulp. This one was, and continues to be, a hard pill to swallow. Hearing aids were an easy decision. (Didn't seem so easy at the time.) But surgery for our 2 year old to permanently implant something in his head that could possibly remove any hearing that he does have? Not so easy. 

There are a myriad of pros and cons for having/not having this surgery. If Milo was profoundly deaf, this would be a no brainer: no CI - no sound. Of course we'd get the surgery. Wouldn't even think twice.

However, that's not the case for Milo.

Milo can hear [a bit]. Hearing aids are most definitely benefiting him. He continually performs at (sometimes even above!) typical-hearing children when evaluated for speech and language. Just ask him what sound a snake makes (a hard one for a HOH kid), or what he wants for dinner, or which of the Thomas trains he prefers. This kid has opinions and isn't afraid to communicate them... with [near] perfect 2-year-old speech.

But are the hearing aids enough?

One area of concern that we've been working on is his inflection. Ya know, the highs and lows and pitch of speech. Milo's speech is a bit monotone. CIs could give him better access to those high pitches that he's missing with the hearing aids. Deaf-sounding speech is something we are determined to avoid. A CI could be a possible solution for this.

For those of you (like me!) who don't know much about cochlear implants here are a few of the myths:

- "Just get him an implant - he'll be able to hear immediately!" Nope. Those YouTube videos you've seen where the implant is turned on and the child immediately "hears" for the first time? Not typical - in the least. Cochlear implants aren't a "quick fix" for hearing loss/deafness. The implant bypasses the damaged cochlea, and the brain and auditory nerve have to re-learn to interpret sound in a completely different way. This requires lots and lots of therapy and mapping and adjustments.
- "An implant is completely internal. No one would even know he has it!" Nope. A cochlear implant requires much more [visible] hardware than a hearing aid. The receiver is implanted under the skin in the ear, and externally, there's a microphone (looks like a hearing aid) and transmitter (affixed to the head with a magnet). Not that the cosmetic piece of this would affect our decision, but it's something to consider. Here's an example of what they look like:

Probably the biggest thing holding us back are the "what ifs":
- What if hearing aid technology continues to improve and we don't need to surgically implant something in our kid's head?
- What if he's doing SO well with the hearing aids that he won't have deaf speech anyway? - What if we regret getting the CI? - What if we regret NOT getting the CI? - What if we wait to ask Milo what HE wants? - What if we wait, and it's too late?

We have completed the initial appointment to determine if he's even a candidate. Next steps involve getting tubes in his ears and a sedated ABR (Auditory Brainstem Response) test. The way Milo's hearing is tested at this point is dependent on his cooperation... and if you know any two year olds that love wires protruding from their ears and being still to listen for a beep, well, good for you. Milo does not. He does well, but he's still 2. An ABR will give us a full understanding of what he can hear and what he can't, and we can compare all of the ABRs we've had to see where his hearing falls. We have the ABR on June 9th, and while he's under anesthesia, we'll also be getting tubes put into his hears. We've been told that removing the fluid from his hears can increase hearing levels by up to 15 db.

A fellow HOH (hard of hearing) Mom totally put it into perspective for me: Be prepared. We're going to second guess this decision either way we go. Either we get the implant and wonder what life would've been like without it, or we decide against the implant and wonder what life would've been like with it. Those will be the questions we'll never know the answer to. All we can do is employ all of the resources available to us, listen to the recommendations from his awesome team at Children's and Callier, do the research, and pray.

I told you it'd be long and waaaaay more info than you care to read. If ya made it this far, thanks!

I'll keep ya posted!

Jaime

Back at it!

Whoa. Last time I posted, Milo turned one. It's been awhile. Here's what we've been up to: 

We got pregnant again! (hurray for babies!) 

Milo turned TWO. (And then two-and-a-half.) 

Marc got a new job! (Treasury Wine Estates!) 

 
We moved to Dallas! (Yeehaw!)

We bought a house! (And seem to now be hemorrhaging money like there's an endless supply... which there definitely is not.)

We had a baby! Much to our surprise, it was a ... GIRL ! Meet our Reilly Louise, born March 18th:

Our first question when she was born: "Boy or girl?!" Our second: "Can you do the newborn hearing screen ASAP?" Luckily, this little lady can hear just fine. "Ssshhhhh, don't wake the baby" is a new concept for us!
  Now I'm on maternity leave for a few more weeks and finally have time to wipe the dust off this page. We'll see how long it lasts. No one really warned me - ok, ok lots of people warned me - but having two small kiddos is no joke. And one of them still sleeps most of the day!

I seem to turn to blogging when we have a major life change/decision to make, and this time is no exception. I started this blog when Milo was diagnosed with hearing loss. And this time...

Milo is being evaluated to see if he's a candidate for a cochlear implant

... which is a beast of a decision to make on behalf of your child. Probably the toughest decision we've ever had to make, and we haven't even made it yet.

I'll explain in LOTS of detail in my next post (prob way more than you wanna know). 

(Someone please tell Reilly to take a nap now, so I can get started on that next post...)

Til then,

Jaime

A Year?! Already?

Words cannot describe how fast the past year has flown by! The ups, the downs, and everything in between, I wouldn't change a single thing!

Here's a fun slideshow to document Milo's first year.

We love you, Milo-man!

Great news for Milo!

Milo-man has had his fair share of doc/audiologist appointments lately, and I thought I'd report back so everyone knows how great he's doing! (I hope that's clear by the shear amount of Milo pics uploaded to FB/Instagram! But just in case there was any doubt...)

The first big step was our very first behavioral hearing test!

A little background: until Milo is able to "tell" us what he can and cannot hear, we've previously relied on an ABR to measure his brain waves when given a sound at various decibels. That test assumes that when he's able to hear a sound, his brain waves move; when he cannot hear the sound, they're flat. They track patterns in these waves to determine level of loss. It gives an approximation of his hearing loss, which is how his hearing aids were programmed.

Obviously, at 7-8 months old, Milo (nor any child for that matter) is able to say "OK, I can hear that!" - so the audiologist team works to "condition" Milo so that when he is able to hear a sound, he's "rewarded" (I know, I know, lots of quote marks) with an animated, light-up toy.

Think back to Psychology 101 when were learned about the Pavlovian response. In a nutshell: ya ring a bell, give a dog some food. Do it enough, and the dog will start to salivate at the sound of the bell. Luckily, we aren't tracking Milo's drool (tho there's plenty of that!). They put a device in Milo's ear and play a sound. When he hears the sound and turns his head, a lighted dog starts dancing. The goal was to have Milo turn his head to see the dog each time he heard a sound. That way, they can measure the volume of that sound, therefore pinpointing his level of hearing loss.

Or something like that. (Gosh I hope this post never makes its way to an audiologist - the probability of me relaying this information accurately is slim to none!!)

Well we went for our first try at seven months. He definitely didn't "get" it that time. He'd turn to see the dog, and in my mind, said to himself "well that's not that special" and continue to go about his business. This was pretty common at this age, but we were a little disheartened.

At the eight month mark we tried again, and he did it! Here's a short lil video. Keep in mind that this was at the end after the testing was complete, so it's a bit more delayed than during the actual test:



The great news is that the behavioral test results were in line with the ABR results, meaning A) his hearing aids were already calibrated to the level that would work best for Milo, and B) his hearing loss hadn't gotten worse in 6 months! It's our hope that his hearing loss will remain as it is now. Only time will tell!

The next step in determining the cause of Milo's hearing loss was an MRI. Through blood tests, we'd ruled out the most common cause, a mutation of the Connexin 26 gene, as well as CMV.  We were to have an MRI to see if everything in the ear was structurally normal. We went to UNC Chapel Hill to have this test done. Since an MRI requires the subject to be completely still, Milo had to be sedated.

I was nervous as heck about the sedation, but it turned out to be not so bad. Just a quick squirt of medication through his nose, and Milo fell asleep in my arms within about 15 minutes. They wheeled him out, got the images they needed, and he was back to us within the hour. He was completely drunk until about 5 pm that day, but soon perked back up to his usual self.

Everything in his ear was intact! No structural issues! Cause of the hearing loss is yet to be determined - there are more genetic tests that we can choose to do. We're undecided about pursuing it at this point. 

We continue to work with Milo's hearing teacher once a week, and we've got lots of tools and resources to ensure that his speech develops normally. (Tho we're aiming for advanced!)

I'll leave ya with a few of the latest pics of our lil man!

Thanks for caring about our family enough to read this through!

Til next time,

Jaime

Taken the morning of his [successful] behavioral hearing test. All smiles from us!

Kinda creepy that they look alike, right? Even weirder? This doll was Marc's when he was a babe! Over 32 years old!

After the drunkness/sedation wore off.

His sleeping position of choice here lately.

Sometimes I think he's going to turn into a blueberry!This is one of his newest pilot caps - with mesh panels on the side (for clarity of sound and so it's not so hot) and snaps (instead of a tie)!

June in a nutshell!

I feel like every blog post starts with “so it’s been awhile since I blogged…” – so I won’t do that this time. (Even though it has.)

I’ll just start by asking if it is absolutely nuts-o that July will be here next week? What the crap? Where did June go? We’ve been busy!

Milo has now taken SIX trips on an airplane – three to Texas and three to Florida. Most of which require four takeoffs and four landings, since you have to connect everywhere when flying from Asheville. Too bad this tiny traveler can’t rack up some frequent flyer miles!

 Since we last blogged, Milo’s been:

• Visited by Grandma Jan, Grandpa Bill, Aunt Carol and Uncle Fred
• To San Antonio celebrate the short life of Baby Kate. He got to be the only dude at Girls' Weekend and thought it was pretty sweet.
• On a major bike ride/nap for Mother’s Day
• To three breweries. His total count is seven!
• To Dallas for cousin Shannon’s graduation from Baylor School of Nursing
• To the beach! (Charleston, SC/Isle of Palms)
• To Tampa on a last minute Dad’s-out-of-town-for-work-so-why-not trip
• Swimming for the first time! And on his first boat ride!
• To his first Hip Hop (“Kid Hop”) concert
• To a handful of Jr. League meetings with Mom
• To the Audiologist for his first “booth”/behavioral hearing test (better luck next time!)
• To lots of playdates
• To Charlotte to visit the Taliaferros
• To lots of Jazzercise classes
• Back to Dallas to see cousin Molly, Aunt Nicole, Uncle Gregg and Grandma & Grandpa

And it’s certainly a good thing Milo-man is OK with being busy. Come to think of it, we didn’t really give him a choice!

Needless to say, we’re ready to slow down and stay put for awhile. Asheville is an amazing place to be during the summer. It’s warm but not too hot and there is a lot to do! Hint, hint: come see us!!

Oh yeah, and Marc and I celebrated five years of marriage! (But now that Milo’s here, no one cares about us, right?)

Back to Milo.

He’s also growing like a weed and learning new things every week! He’s been sitting up unassisted for about a month, and he’s thisclose to crawling. And I caught him standing in his crib today. Guess it’s time to drop the mattress. He’s finally figured out the Johnny Jump Up and can bounce for hours. Well, not hours exactly. But you know what I mean. He’s eating some solids every day and LOVES puffs (aka: baby crack).

He’s laughing and babbling and overall the happiest little boy. We completely won the lottery by getting this kiddo! It’s clearly not our parenting. Our technique tends to be bumble-around-and-figure-it-out-as-best-we-can. 

Anywho, these pics are way more enjoyable than anything I could write. So… enjoy! 

With GREAT Aunt Carol at Tupelo Honey Cafe in downtown Asheville

 

Caught sleeping on the job! Daddy was less than thrilled.

Celebrating Shannon's BSN in Dallas!

Atop Mount Mitchell during the Mottingers' visit.

Grandpa installed a swing on the patio and Milo loves it!

The graduate and her cousin!

Milo and Grandma Judy!

You guessed it - Milo @ 7 months!

Taking time to chill at the beach.

Another visit to Granny in Florida, another ride on her Rascal.

Milo & Molly (sounds like a TV show, doncha think?)

All the Mott & Song kiddos. Aren't they cute?

A less than perfect pic. It captures 99% of that photo shoot!

On the boat with cousins Savanah and Collin.

Just an ordinary afternoon at the Bywater. In a Team USA onesie. Swinging around the pole.

Kash & Lola: the standoff. (Lola won.)

USA! USA! USA!

This little stinker got caught!

Time is flying by!

Checking himself out at the gym in our building.

Milo visits Daddy at work!

Cheering on the US Men's soccer team while chewing on a hearing aid. This kid is talented!

Milo heads to Norfolk!

Back in April (what?! I clearly have some catching up to do!) we took Milo on his first road trip to see Uncle Gregg, Aunt Nicole and cousin Molly! This was only their second time to meet, the first being back in November or December, when they were just babies! We had a ton of fun enjoying the kiddos. Boy things have changed, though!

He did amazing in the car, sleeping from door-to-door on the way there. We left at his bedtime (and arrived in the middle of the night!), which turned out to be a successful travel tactic for us! 

I'm incredibly lucky to have such an amazing sister-in-law! We were blessed to get to experience pregnancy at the same time, and the milestones continue! Milo and Molly are only nine weeks apart - so I've got a great resource for all the "what's next?" questions that I have.

Here are a few pics from our trip! We hired a photographer for some Mother's Day pics for Grandma Jan - those are included at the bottom. I've wanted to share them for awhile, but we couldn't ruin the surprise!

Aunt  NiNi and Uncle G with Milo!

Headed to the Norfolk Zoo with the Burtons!

Fun at the Zoo!

Talking soccer, I'm sure.

Cousin love!

Smooches for Aunt NiNi!

Lovin' on Miss Molly!

Don't we look good with TWO babies?? :-)

The first of many hair pulls, I'm certain. I can just hear her in three years "will you tell Milo to leave me alone?"

Kissing cousins!

Playing airplane with our Daddies!

Mommas' turn!

My favorite picture from the day. You can't tell here, but it was preeeeetty frigid that day...

More blog posts coming soon - we've been busy!!

Jaime