From our family to yours...

Ochsner's CI Recipient Christmas Celebration

Last week, we switched Hunter's AV appointment to Thursday morning so that we could head to New Orleans for a CI Recipient Celebration honoring children implanted by Dr. Molony at Ochsner's Hospital in New Orleans. It made for a longggg day, but my good friend Lauren offered to join us... and I'm pretty sure she has all of the Barney video words and dance moved memorized!

The day we went to see Dr. Molony for Hunter's 1 week post op appointment, he said next time I see this guy I want him to tell me hi. Well what do you know... the first person we saw when we walked up was Dr. Molony and Hunter proceeded with his adorable little "Hi!"

I didn't realize this, but Santa Clause had also planned to make an appearance at the party. There were about 60-70 people there, and the kids below were all implant recipients.

Patiently waiting for Santa....

There he is!

Going in for the kill....

And.... hands in the mouth, nervous, not really sure what to think!

It was very nice seeing SO many other families who are part of the Ochsner implant community. I have met various families over the past year, and two of them were there that I had been in contact with before.

I also met a few new families and overall, it was just a great experience. I know when Hunter gets older, he will appreciate this gathering so that he can meet other children his age with "ears" just like his! 

Live and Learn

AV Therapy Comes to Town

I got a text from Hunter's therapist, Shelley Chesney, last week... and she said she was looking into coming to the Lafayette area once a week for therapy, she just needs more clients.
You all have no idea how much easier this would be on us. The drive was taking a toll on everyone. One time Hunter cried from Lafayette to Lobdell because no one was available to sit back there with him. It sounds ridiculous, and frankly it is. But last week, Blair took him and his mom was sick so she couldn't ride with him. Well Hunter was so upset and wanted to get out so bad, that he got himself too worked up and threw up in the truck!

It's just not an ideal situation. Do we do it? Of course! And we will do it as long as Hunter needs. But it would be a WHOLE lot easier if she could come here.
So if you or anyone you know has CIs or has children who are HoH, Shelley is amazing. I could go on and on about how great she is, but if you watch the videos on my blog, the proof is in the pudding.

Please contact myself or Shelley Chesney with the Chesney Center in Baton Rouge. We would love to have you as part of our Chesney Center family. And better yet, Hunter would love not to have to ride back and forth to BR every Wednesday afternoon!

My Fuel

I read something on a blog recently that made me think, this is so me... this is so so me!

"I sacrifice sleep. I sacrifice work, against my better judgment sometimes, because I need to spend time with friends. It fuels me." 

I do. I take long lunches sometimes just to catch up. I stay late at supper club and go to bed an hour later than normal to be with my girls. And as hard as it is to only see my family for a couple hours at night after work, I sacrifice them as well when old friends come to town, or my Italy friends want to get together.

Getting off of Facebook a few months ago was a pretty big deal for me. I think it was a bigger deal leading up to it than it was after the fact. Because I survived, yes. Do I always know the latest and greatest news...no. But I don't miss it. Because my friends... My tried and true friends remain in contact with me in other ways. Now I'm not hating on facebook, because I'm a huge advocate. I just needed a break to focus on more important things than what a girl I had one class with in college was eating for dinner that night.

Now back to my point. I want to thank my friends, basically anyone in my life who has taken time out of their own schedules to go out to dinner, to stop by and visit, to call, email or even just to text to check in and see how things are going. I have one friend that I haven't seen in months because she now has 3 kids under 2, but we have the best and longest texting conversations. I have friends that I've never met before who have children in the same situation as Hunter, and I have connected with these mothers like I will never connect with any of my other life long friends. There's just something about a friend who knows what you're going through... you want to grab on to them as tightly as possible and never ever let go.

I know when Hunter was going through his surgery, I emailed Landon's mom at least 50 times about different things. And when she responded, she elaborated on every single thing I asked about. What a selfless kind of friend. Eventually we even met for lunch one day because she only lives an hour away, and it was so awesome. It felt like family.

When Blair and I went to St. Louis for the Usher Coalition conference, Sophia and her mom and dad met us for dinner. What an amazing experience. We sat there and shared stories, shared struggles, and shared success stories. But the hearing loss, what brought us together, is so much deeper than a special needs child. It's people in this world who want to help and want to meet and want to just be there for you.

When the founder of Eye on Jacob and I met back in October, we had something even deeper. When she was telling her story of why she started the foundation, she looked at me said I can just see the pain in your eyes, and I feel that pain for you. I feel the burning desire that you have to do something about this and be part of a cure.

And when I met Jennifer Lentz, the researcher from LSU. She said of all the things in her life that lead her to where she is today, that she knows finding a cure for Usher 1C is what she is here on this earth to do. And I just started crying at the table. It was music to my ears, and when we left the restaurant, I said I am pretty sure you are going to be our saving grace, and I am going to do whatever it takes to help you get there.

This past year has been a lot of firsts for me. Meeting new people, expanding my comfort zone, and just learning more about myself and what keeps me going in a positive direction, while eliminating the negative.

I had my 10 year class reunion Thanksgiving weekend, and a majority of the girls there are ones that I have stayed in touch with over the years. And then there were some whom I have stayed somewhat in contact with but not very often, but still came up to ask how we were doing since Hunter got his ears.
There really are thoughtful people in this world. The ones who aren't there to just tell you the magnificent things they have going on in their lives, but the ones who are truly interested in yours.

I have sorority sisters that I haven't seen since we graduated, and they send me the most thoughtful emails and messages. (one thing I miss about facebook). But I wasn't always one to reach out before, I was always too hesitant wondering if they would think it would be weird to say Hi, I hope all is well. But as much as I love hearing from others, I know they appreciate it just as much.

So thank you to my friends, the old, the new, and all those inbetween. My email buddies, and my texting ones. My work peeps who get my day in and day out stories. And my family... I know I can't pick my family, but God couldn't have picked a better family for me!

Holidays

I don't even know where to begin this post... it's been so long since I have had time (or energy) to sit down and blog.

Hunter has been walking/running around NON-STOP. I even asked Blair tonight if maybe he was hyper-active becasue he just doesn't stop when we get home! It's so fun though. I honestly can say, now that he is walking, this age is a ton of fun! He is repeating everything we ask him to, and we are starting to work on putting two words together.

Here is a video from AV therapy two weeks ago:

 

And here is a video from AV therapy this week:

 

 

And here are a few pictures from the Safari of Lights at the Zoo of Acadiana

 

 

He hasn't really touched the tree or the presents.... YET

 

And here is our latest video of him walking/running. Excuse the diaper only fashion statement, I think he feels free with no clothes on :)

 

 

I am hoping after this week that I can get back on track with more details in my blog posts. Meanwhile, it's pictures and videos galore!

 

Happy Holidays Everyone!

 

20 Months & Walking

Yesterday, Hunter turned 20 months. Where does the time go? And when can I stop counting his age in months?!? At 2 I assume!

Today, Hunter started walking/running on his own, and he did.not.stop.

Here's the proof that it wasn't just a one time thing!

And super duper excited and proud parents :)

and obviously he's pretty proud of himself too, ha!

Thank you to everyone who has "walked" Hunter with us, all of the hard work has definitely paid off!

Friday Phone Dump

Speech Therapy with Ms. Amy!

Life has been so busy lately, I can't believe it's almost the middle of November. So for now, it's a picture/video post! 

Tomorrow, I am having lunch with Jennifer Lentz, a researcher from LSU in New Orleans who is researching a cure for Usher 1C, and I am thrilled to hear what she has to say! 

Have a wonderful weekend everyone ;)

Paw

Rest in peace, Paw. In your

favorite "Helping Hunter Hear" t-shirt. And thank you, thank you, thank you for the many many prayers you said for Hunter.

Keep them coming from Heaven!

Love,

Walk-Walk

:)

6 Months Post Activation

Saturday, October 27th marks 6 months since my baby boy first got his "ears" turned on. What an exciting new world everything has become to Hunter! I have been trying to keep a running list of words that Hunter is saying on a consistent basis, but we have lost count because there are so many! I am pretty sure it's safe to say that he will attempt to repeat anything to tell him to. And about 80% of the time, it sounds correct! Every day we hear 2-3 new words come out of his mouth, and he has even put a couple of words together here and there.

Our AV therapist did a progress test on Hunter last week at therapy, and she was amazed to see how far he has come in only 6 months. I think we are all pretty blown away at how far he has come. We never imagined that at 19 months Hunter would understand a majority of what we are saying, and repeating so many words after only hearing for 6 months.

As far as OT and walking are concerned..... we are still making baby steps, which means progress! He even stood alone for a couple of seconds at a friend's house this past weekend. We are getting there... 21-24 months, that's the average time frame for a baby with Usher Syndrome to walk. But I have said the one positive thing about walking with him and holding his hand is that we are able to talk to him so much, every step we take we are talking. Rather than a 19 month old running from us, we are with him able to teach him at the same time. So there is a positive. But I think we sleep just as hard as he does, because we go go go go go just as hard as he does!

Here are a few pictures from this past weekend. Great times with great family and friends!

Hunter's 1st pony ride!

Superman!

A little therapy pushing Kell in the stroller all by himself! And zero face plants I must add!

(This is the same boy who refuses to walk with any kind of walker at home.)

After one very busy day! (I love sleeping pics!)

Usher Syndrome Awareness Wristbands

Blair and I recently purchased these wristbands to help raise money for the Usher Syndrome Coalition. The Coalition puts on the Usher Syndrome conference every summer, and when Blair and I attended the one this past summer, I knew these people were real. Real in their every day struggles, real in the hardships their family members had faced, and most of all real in the passion that this group of people has to find a cure for Usher Syndrome soon! 

Each wristband is selling for $5 (without shipping charges) and all proceeds will go to the Usher Syndrome Coalition to help fund the services that they provide to those individuals affected by Usher Syndrome. There are two sizes, one is an 8 inch adult and one is a 7 inch child. Upon receiving these wristbands, I noted that the 7 inch fit myself more appropriately than the 8 inch, which was more fitted for Blair. So I would say if you are interested in ordering a wristband, the 7 inch is more fitted for women (I don't have a tiny wrist) and the 8 inch is more fitted for men. When I first placed the order for them, I ordered more 8 inch wristbands because the 7 inch were labeled child. But if need be, I can always order more 7 inch. 

The Usher Syndrome Coalition's website, www.usher-syndrome.org,  will soon put these up for sale with the option of paying through PayPal. It will also calculate shipping charges for those of you who don't live around Lafayette or New Iberia. I know people have been seeing the ones Blair and I wear and have been asking if they can purchase them now, so I figured I would put up a post about them now.

If you do not feel comfortable wearing them, that is perfectly fine. We just ask that you put it in a place to remind yourself to send up a small prayer when you see it. If you do wear it, please feel free to tell anyone who asks about Usher Syndrome everything that you know, and even direct them to my blog if they want to know more. Bringing awareness to this area is the first step in helping to find a cure. 

To order, please email me at HelpingHunterFaucheaux@gmail.com with the quantity and sizes. If you do not live in this area, I can mail them in a regular letter size envelope for a small fee. And if anyone wants to order in bulk, I can arrange that as well. 

Thank you in advance, we truly feel like this is going to be a huge step in educating people on Hunter's condition!

Blair and Elise Faucheaux 

Wordless Wednesday

Pumpkin Patch 2012

Hunter and Mommy

Tia (Marianna) and cousin Kell

If you all could have heard how many times we called their names to look at the camera, and this was basically all we got!

One decent shot of a zillion!

Super man and super daddy!

Hunter and Mommy before the twins' baptism, keep scrolling for double super cuteness!

Happy 2 Month birthday to sweet Greyson and Sawyer!

Our new handed down twice playhouse in the backyard. Completely new to Hunter!