Testing, testing. Is this thing on?

Welp, we are activated. Milo has now entered a whole new world of sound.

The whole activation process on Friday was actually pretty anti-climactic - which is a GREAT thing. We knew there wouldn't be this AHA! moment, since Milo has had access to sound previously. Those miraculous YouTube videos are typically of individuals who haven't any sound before. Not the case for Milo.

What we were hoping to avoid was a bad reaction, which - thankfully - he didn't experience. We could tell he was hearing the beeps and voices. At one point in the second video below, he asks to take it off, which isn't uncommon, since the new sound is so unfamiliar. As time goes on and as we work to improve it, it will become his new normal, and he'll likely love it.

And we think he's already getting a little more used to it. He doesn't want to take it off for naptime/bedtime, and he keeps asking Marc to clap his hands. Must be a new/different sound to him.

Sometimes he says "I don't want to wear that [cochlear implant]" but doesn't resist too much, and once it's on doesn't mention it again.

I jokingly ask him (in a robot voice) "do. I. sound. like. a. robot.?"(and in a high-pitched voice) "or do I sound like Mickey Mouse?" and he laughs and says "you sound like a robot, Momma!" But it won't always be like that.

Here are a couple of videos of our activation experience. You can see his facial expressions change when he hears the sound.

Here's one with beeps:

And here's one with the microphone (so he's hearing voices):

I was surprised to learn that there are 8 million little accessories to Milo's new ear. I don't know what half of them do yet, but we've got some time to learn.

So if I'm completely honest, I expected one extreme or the other. For him to hate it, and we constantly battle keeping it on. Or for him to love it and for us to notice immediate increased understanding. It hasn't been the former, so I'm grateful for that, but it also hasn't been the latter, so I'm ready to start working with his speech therapist and teacher at school [without his L hearing aid in] to see exactly what we're working with!

Thank you SO much for your support, prayers and well-wishes. The work starts... NOW.

Happy Halloween everyone!


- Jaime

Milo's New School!

#truth

I saw this graphic in one of my FB parents' groups, and during such a big week, it resonated in a BIG way.

This past Sunday, October 23rd was Milo's THIRD birthday, which means he's transitioning from the infant/toddler Early Childhood program and gets to start at Pearson Elementary School through PISD at the Plano Regional Day School Program for the Deaf (RDSPD for short).

He's in a class of 8 kids who all have hearing loss and his teacher is an LSLS Certified Auditory-Verbal Educator and there is an SLP who works with the kiddos and they're both absolutely WONDERFUL (as is the rest of the staff at Pearson). His classroom is set up with optimal acoustics and an FM system and the curriculum is geared towards kids with hearing loss. Milo came home talking about his day and his teacher. From the look on his face in every picture we saw from that day - he's going to LOVE it there. We're expecting great things!

The biggest news (for Milo, anyway) is that he gets to ride the school bus!! It picks him up at our house in the morning, and takes him to "Reilly's school" (his old school) in the afternoon. He's been waiting to do this for a long time!

 Milo's first day!

Elaine worked with us through PISD weekly until Milo turned 3.
We'll miss you, Elaine!

 And you've heard me say it only 8,433,133 times before, but Milo is getting activated this Friday!!

I can't reiterate enough: it won't be like those magical videos that you've seen on YouTube, but this is the start of a whole new world for Milo! Thank you for all of the prayers and well-wishes.

Also, please keep Milo's buddy Layla in your prayers. It's been a hard week for her and her family - with a long road ahead - but she's such a strong lil lady. You can read more about Layla's story here. You got this, Layla! Milo can't wait to be told which My Lil Pony to play with. :)  #laylastrong

Milo Post-Op!

This kid, is a champ. We knew that. You knew that. But he proved it time and time again following his surgery! Thanks SO much for all of the calls, texts and messages following his cochlear implant surgery a few weeks ago!

Our surgery was scheduled for 7:30, so we had to check in by 5:50. This was GREAT news, as we didn't need to deny food for very long. Donned in his new TMNT pjs from Uncle G and Aunt Nini, we headed to the hospital and never looked back. Marc and I were both a bundle of nerves leading up to surgery day, but an eery calmness set in on the morning of surgery.

Thanks to amazing nurses, anesthesiologists, doctors and child life specialists (thanks, Jessica!!) - we had the best experience at Children's Dallas.

We were able to be in recovery when Milo-man woke up, and I believe it make all the difference in the world.

Y'all. We were HOME by 11:30 am. They just implanted a device in my kid's head, and we were home before noon. He napped (we tried to) and was up and ready to play by 1pm. He never once complained of pain. Pretty sure he thought that a cochlear implant was a cotton ball, because that's what he knew of his right ear.

I kept him home from school on Wednesday, but it was immediately clear that YOU CAN'T HOLD THIS KID DOWN. Annoyingly (and gratefully) so.

He went back to school on Thursday. (48 hours after his surgery, in case you were keeping track.)

We're now anxiously awaiting his activation. (When we get to turn it on.) Friday, October 28th is the day. Say a prayer for us that Milo responds favorably. (You KNOW that I'll update you here once it's happened.)

Here are some fun photos and videos of this day. This kid is so resilient.

Milo, pre-surgery (7ish on Tuesday morning)

Milo, post-surgery (1ish on Tuesday afternoon)

Til next time,

Jaime

Taking the plunge

After months of testing and debates and research and tears and prayers... we've finally made the hardest decision we've been faced with yet: 

Milo is getting a cochlear implant on September 27th! 

There. I said it. 

Just feels good to have finally made up our minds and we're ready to move forward. 

I wasn't aware that with that one decision would come many others! Did you know that there are only 3 companies that make cochlear implants, and the parents have to decide which to go with?! No clear-cut winner (or loser), no real recommendations from the audiologist. Every single person I've asked - and I've asked A LOT of people - says that it's impossible to make a wrong decision. No matter which we go with (Advanced Bionics, Cochlear America or Med-El, in case you were curious), Milo will likely be successful. They all look [mostly] the same, function the same, will give Milo similar benefits. The main differences between the companies are the "bells and whistles" that are offered. BTW - Milo will be able to do far more with this device than you could with your last cell phone. And SWIM! Each of the three companies has water accessories that make it possible for Milo to wear while in the pool/ocean/bathtub. Marco Polo, here we come!

Now, I'm not so naive to think that there won't be lots (and lots and lots) of challenges with this. They won't even turn it on ("activate") for about a month. And when they do, it's very likely that Milo will hate it. His brain will have to learn to interpret the sound in a whole new way. Doesn't sound fun to me. One adult CI user told me that in the beginning, when they heard a bird chirping sounded like a car alarm going off. But eventually she adapted and chirping is no longer unpleasant. 

Everyone says kids adapt SO fast. Apparently, kids have this heightened elasticity (or sponge-y-ness) in their brains until about 3.5-4 (and then it starts decreasing), so we'll have lots of time to capitalize. It's the same reason why kids can learn a second language so much more easily. Let's hope Milo is able to adapt fairly quickly to these new sounds so that we're not second-guessing this decision. I know it'll be better for him in the long run, but when things get tough in the short term, I'm going to need you to remind me of this. 

And don't get me started on how nervous I am for the actual surgery. Milo reacted less than pleasantly (to say the least) during the anesthesia for his ear tube surgery that we had back in July, and this time they're inserting a medical device inches from his brain. (Do not, I repeat, do NOT do a google image search for CI surgery. I saw some black and white pics in a book and got a little queasy.) Rest assured - the pain meds will be administered to a T, and the ice cream will be more than plentiful. I'm hoping for hugs and snuggles rather than tantrums and glares. We shall see. 

Luckily, I'm tied into an amazing network of Moms here in Dallas who have gone/are going through the same types of struggles as we are, and it's so cool to have this kind of support. They speak this language. They know what it's like. Advise is given without judgement. We can joke about attaching refrigerator magnets to the sides of our kids' heads. (True story!) Pretty sure you might feel awkward doing that. Not these Moms!

Another exciting change is that Milo will be starting preschool through Plano ISD when he turns 3 in October. He'll be in an aural communication class with other kids with hearing loss. We toured this classroom a few months ago and fell in love - I'm so excited to see how he progresses. I never ever wish time to go faster, but I'm ready for October to be here. After school, he'll be bussed to the preschool where he is now (and where Reilly will be), so he'll get [what we consider to be] the best of both worlds. Six hours of speech and learning with his new teachers and friends, followed by fun and controlled chaos in a mainstreamed preschool with his familiar teachers and friends. 

In other news - we just returned from an awesome trip to Asheville and had the best time catching up with friends in our favorite city. Reilly is now FIVE months old, and the happiest, laid-back baby you ever met. She's still our chubby baby, and it's so fun watching her learn new things, and to see Milo interacting with her. Peek-a-boo is a new favorite, and she'll give the cutest lil giggle whenever he makes silly noises/faces at her. Here's a couple of photos of my two favorite Motts: 

And here's how I feel most days... but it's alllll worth it. Right?

Thanks for reading! Hope you have a great Thursday. 

- Jaime

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!