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!