Weekend Update

This past weekend, my friend Noelle and I went up to NYC for the weekend to meet my friend Brandi who is there for work training for three whole weeks. I couldn't imagine being away from my family for three weeks straight, much less like Brandi, being away from her 3 year old and 3 month old. Brandi has been on a roller coaster ride this past year and a half, as you can read about on her blog about her daughter Avery Kate, who passed away from SIDS in 2011. We were glad to give her something to look forward to and to help pass the time :)

The weekend was filled with lots of laughter, love and even some tears. But most of all it was filled with some deep, some light and some alcohol induced conversations between three of us who have been friends since junior high.... yes, friends for 15+ years, and still remain in very close contact. I feel like I was able to take a real "break" this past weekend. I put the never ending to-do lists on hold for a few days and was able to detach myself from the real world responsibilities of work life and mom life. I was able to just go without any obligations while we were there. A part of me felt a little guilty, but an even bigger part knew that I needed that time away. With tax season already here, I'm pretty sure I fueled up enough to make it through April 15th!

Me, Noelle and Brandi

While we were there, we met up with a sorority sister of mine, Lauren, who has been living in NYC since graduating from UL. She and her husband live in an adorable quaint apartment in downtown Manhattan. They welcomed us to their apartment with open arms and showed us a night out like real New Yorkers!

Noelle, Lauren, Me and Brandi

Then on Sunday, we had the pleasure of having lunch with Sweet Baby Madison and her parents. There is nothing better than having a conversation with someone who has been on the same journey that you have, and who is walking in the same shoes that you are. Madison's parent, Brian and Jennifer, were two of the most inviting and admirable parents I have been able to keep in contact with. They emailed me when they first found out Madison was diagnosed with hearing loss. They were so glad to have found my blog and to have someone to follow on their quest to getting CIs. But little did we know, Madison ended up getting implanted 2 months before Hunter, at 7 1/2 months, even though she is 3 months younger than him. (yes, I am still a little bitter that we had to wait until after 12 months to get implanted) So I was able to follow their story through her surgery and get a close up picture of everything they had gone through before Hunter's turn came. So thank you to Brian, Jennifer and to sweet sweet Madison. It was a real treat to be able to meet you all and to share stories and experiences with you guys. I mean it when I say you guys are admirable, I can see it in your eyes that you are going to give Madison every opportunity to excel in so many ways!

Madison, Jennifer and me. 

Oh, and when I got back home, it seemed as though Hunter was talking leaps and bounds more than he was before I left. It was so rewarding to be able to really see progress after being away for a few days. The normal hum drum of life tends to take over and we don't appreciate the everyday talking as much as we should sometimes. 

3rd Anniversary

Tomorrow marks 3 years that Blair and I have been married. It's kind of crazy to think that we dated for 3 years between high school and college, broke up and went our separate ways for 5 years, then ended up back together after all that time. Went through a lot of up and downs throughout the years, but I think those trials were there to prepare us for what God had planned for our future. I could not have asked for a better person to tackle every card we have been dealt, and those which we haven't even been handed yet. We agree on most, and when we don't, we try to respectively agree to disagree. Hehe.

Without Blair, without our genetic makeup (Usher genes or no Usher genes), we would  not have Hunter. And without Hunter, our lives would not be complete. He may not have a "textbook" genetic makeup, but as my good friend Noelle once said, "Your son is pure perfection, made in the light of God and equal halves of two of the best people I know". He's perfectly made up of the two of us, and that's more than some people will ever be able to say.

Thank you, Blair, I truly admire the husband and father that you have become!

                                 

January 16, 2010

Mappings and AV Therapy- 8 Months Post CI Activation

This past Wednesday my friend Lauren and I started out early with Hunter for a mapping appointment in New Orleans followed by an AV therapy appointment in Baton Rouge that afternoon. I have to give a huge shout out to H and an even bigger thank you to Lauren because he did SO well the entire day. (for those of you who don't know or haven't gotten the pleasure of experiencing our long car rides lately, Hunter is just not a huge fan to say the least!) Our ride there was about 2 hours and 20 minutes, and I think it also helped that he had just woken up, we had Barney on the DVD player, his Barney stuffed animal, and iPad in tow! Whatever it takes.... right?

In the picture below is our angel of an audiologist, Ms. Tanya Andrepont from Ochsner's in New Orleans. She was very satisfied with the mapping levels that Hunter is on for now. She hooked his ears up to the computer and did a series of beeps to get him to drop the blocks in the box when he heard the beeps. Of course he just wanted to drop them all in and subsequently pour them all out, but he showed off his ABCs and his numbers, so she was smiles from ear to ear! (Thanks for all the footage, Lauren!)

Waiting to go into the sound booth.

Ms. Tanya did a longer series of beeps and sounds through a microphone on the other side of the window in the sound booth to see if Hunter could localize the sounds and turn in the direction from which the sounds were being permitted. We did this on our last visit and he didn't react up to par, but this time he turned for every single one! I was so excited that he was turning towards everything, but for some reason I had a feeling he would do well. I was telling Ms. Tanya how every time he hears something new or out of the ordinary he points to his ear, perks up and says "Her dat" (I heard that). And he does it even when the refrigerator starts to hum on or when the freezer drops ice. He can be reading a book or playing on the couch and he will always point those things out. Now get ready for it because I'm about to brag.... but Ms. Tanya said Hunter is the posterchild model for Cochlear Implants! I was floored. Music to a CI mother's ears! She is always so sweet to us and loves Hunter, but this was the most amazing news I have heard since he got his ears. She was so impressed by his progress. My little angel, all of his hard work has definitely started to pay off!

Here's a small video from the audiologist to give you an idea of what she was doing.

Now on to AV therapy. As you can see from the pictures below, we have a good ole time every visit. Hunter hasn't seen the student teacher in a while, so basically all he did was make sweet eyes and flirty faces to her the entire time!

Even showing off his abs!

We could not have asked for a better day. I was semi-dreading it, I'm not going to lie. But in the end I know we will always get through it. 

A whole new meaning to Christmas...

This Christmas will go down in the books as one of my most memorable. Not only was it filled with an abundant amount of love from great friends and family, but for one special little guy, it was filled with the joy of sound. 

I could sit back for hours and watch Hunter "dance" around the house, run around in his diaper, "play" with his many many cousins, and rip open presents like there was no tomorrow. I wasn't prepared to enjoy Hunter's reactions as much as I did, simply because I didn't think he would care much for the presents and the toys inside of all the boxes. And every so often when he would hear something new or out of the ordinary he would sharply point to his ear and say "herdat". And we would abruptly respond with yes, I heard that! That was the singing bear, the piano/guitar, etc... it was truly a special time for us all. 

With all of the new vocabulary that comes with the holidays, Hunter's speech and language has really started to soar over the last month. And I have to say, it's one of the most beautiful and rewarding experiences I could ever be a part of. Being Hunter's mother is not only a job and a role, it's a gift. One that keeps on giving back, good days and bad, time after time. 

Enjoy some memories from Christmas 2012- One that will go down in the books forever. 

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!