Saturday, November 16, 2013

just had to post

I'm in the middle of writing a long overdue (as usual) update on Aiden, but just had to come share a special moment shared by him and me this morning.

Early this morning, as everyone else slept, Aiden and I sat on the couch snuggling, me trying to search for Christmas ideas on the internet, him trying to get me to play Candy Crush on facebook. I don't even know what started the conversation, but we started talking about being deaf, hearing aids, and cochlear implants. He understands he's deaf, he knows that not everyone needs CIs to hear, and honestly, he never says much about it. He loves his technology and at times, even prefers to be without.

So as we talked, we watched videos. Videos on his hearing journey - from the time he had hearing aids (he thought it was hilarious that he was in the audiology booth as a baby!) to his activations, to his one year hearing video. It was after watching this one year hearing video that he snuggled up closer and said,

"I want to make a video. I'll say how I hear with cochlear implants and why I love them. and about (being) deaf."

This March will be his FIVE year hearing birthday.

Celebration indeed.

and what a perfect project to work on together.

In the meantime, a little flashback to his first year hearing video - From Silence to Sound.

Saturday, June 29, 2013

Good Articles to Share with Educators

Just a couple hearing loss articles I came across that I thought would be beneficial to give to schools, teachers, day care providers, etc. to advocate for our kiddos.

I came across this one and then realized it is written by Leah over at Say What! I absolutely love her writing! So informative, so detailed, and I think this one is especially great for those people new in your child's life who need that basic understanding of what hearing loss looks like and sounds like.

This second one I stumbled upon from a hearing loss group I'm a part of on Facebook. I've never heard of this blog, but I'm going to search through it as I always love reading about hearing loss from a deaf adult's perspective to give me a better insight into Aiden's world. In this article, he writes about concentration fatigue. With Aiden starting full day kindergarten this fall, it's that something that's been weighing on my mind as I know he's just going to be whooped by the time he gets home. I thought this is a great article to share with educators as well.

Thursday, June 20, 2013

Introducing the Nucleus 6

This is so exciting! It's not available in the US yet, but just the fact that Cochlear has had two upgrades in the short four years that Aiden's been hearing is just amazing to me! Now let's just hope that our insurance agrees!

Monday, June 17, 2013

Never too late ...

to start this blog back up (and catch up on everyone else's!), even if it's been over six months since my last post.

So I've vowed since it is summertime, to sit and have journaling time for my kids, and for me.

Time to get back into our journey.

and since the last time I posted (in November 2012), we have

  • packed up and moved to Texas (it feels SOOOO wonderful to be back home)
  • spent some good time in Wisconsin before heading south
  • acclimated to new schools
  • had IEP madness (so glad that's over!)
  • said good-bye to an AMAZING AVT program in Ohio and reunited with our very first AMAZING AVT and audiologist back in Texas
  • been catching up with friends GALORE!
  • sang Happy 5th Birthday to Aiden
  • signed Aiden up for KINDERGARTEN! (deep breath).
  • had many swimming/bbq days with our friends
  • went fishing, had bbqs, and more catching up with friends
  • been submitting applications to reenter the classroom (I can't believe it's been FIVE years!)
  • been hanging with our Ohio cousins who came for a week long visit
  • been HAVING FUN.
Needless to say, I've been non.stop.busy.

But it's time to stop, and catch up.  I have so much to write about.

Aiden's journey continues. At his own pace, with his own special needs. We're still climbing that mountain, with obstacles along the way, but we're getting there. We're on the right track and I feel good about where we're at.

Friday, November 16, 2012

going {home}

We're packing it up
 heading home.

Well, not truly HOME-home, because neither my husband nor I grew up there,

BUT, Texas is where:
I moved to in 8th grade ... and stayed
 (my dad was military, so I was used to moving EVERY.three.YEARS).
Where I fell in love back in 1993 with my amazing husband,
had our first born,
and then our second,
and then eight years after our second decided, "Hey! let's have a third".
Where we owned our first and second home,
made many friends that became "our family",
started my first (and second, and third) careers.
Where my brother recently moved back to (even though he'll be FIVE hours away)
 and my other brother is moving to this Spring.
(Now we just need to pack up mom and get her there too.)

so yes, 
we are going HOME.
Back to the same city.
Back to the same schools.
Back to friends and "family" we've known for
all the years we've been married,
 celebrated many holidays with,
and who watched our kids grow up.
Back to an area we know and love.
Back to the CI team who diagnosed Aiden and his first
AH.MAZING auditory verbal therapist.
(you know, the one who doubled as my own personal counselor for the first 8 months of A's life)
Back to Kat and Thomas and Sid.
(all I can say is wine+a great friendship between us AND our kids+sunshine and patios and pools=pure bliss)

All my kids are excited.
especially aiden who truly has no clue,
yet tells me nearly everyday,
"Mom stop {insert whatever it is I'm doing}. We have to pack for Texas!"
oh and Ryan.
Beyond excited to go back to the friends he's known since he was SIX.
and Kailyn.
well, she's a little more apprehensive. She left in 2nd grade, now she's in 6th
(enough said).
she's been reconnecting with all her friends there through texts though; she's excited too.

We're all excited.

As another chapter comes to an end,
another book begins to open.
Life is a journey.
Enjoy the ride.

Thursday, November 8, 2012

and the preschool teacher says ...

(posted this on Facebook, but trying to catch up on his blog and this is definitely "baby book" material)

first - one of my favorite "waiting for the bus" pictures

and here is a little snippet from Aiden's teacher at my recent parent-teacher conference.
(remember, Aiden is in a mainstream (nontypical) preschool class with 13 kids, all hearing with 8 typical peers)
"He reads the board out loud before I have a chance to,
he reminds me when I miss something in our daily circle time routine,
we have to ask him to give the other kids a chance to answer the questions,
and he's one of the most vocal in the class."--Mrs. M.

Wednesday, October 31, 2012

From Freedoms to N5s

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

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

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

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

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

Some differences:

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

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


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

Let's move on. Check out the differences:

front view with Freedoms (and his first ever school picture)
front view with new N5s! you can't see them!
Freedom (minus snug-fit) vs. N5s (which he doesn't wear the snug-fit with since the ear hook is much sturdier and holds on better - we do still use the critter clip though).
Look how much more slender the N5s are
Such a difference! We LOVE them!
and yet to come (once I can get time to edit it), what Aiden thinks of his new CIs.

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