~Evynn Reese~

My daughter, Evynn Reese was born on 11/1/2010. At 10 months old she was diagnosed with a profound hearing loss in both ears. This blog documents her journey to hear. It includes ups, downs, testing, hearing aids, cochlear implants, therapy, school and everything else going on in our crazy but wonderful life! Evynn is such a strong, incredible little girl and we are so very proud of her!

Saturday, September 22, 2012

2 Major Milestones in 2 Days!?!

This week Evy continued to impress us with her amazing progress! On Thursday Evy did something incredible... for the first time, she put her "ears" back on all by herself! Recently she had been noticing when one would fall off and would say "Uh Oh!" Then she started attempting to put the coil back on by herself and it didn't take her long to master it! Here it is...

Then, yesterday I heard her say something that I'd never heard before... her name!!! Evy has consistently attempted to say everyones name; Mama, Dada and Paityn...but never Evy. Well yesterday that changed! Here she is saying her name for the very first time!

So proud of my baby, GO EVY!!!!

Wednesday, September 19, 2012

September 19, 2011...A Day We'll Never Forget.

It was exactly one year ago today... the day we found out that our sweet baby Evy was deaf. We woke up early that morning to head to Cardinal Glennon Children's Hospital to have an ABR (automated brain stem response) test. We had already done a hearing test in the booth the previous week and were told that there was enough suspicion of a hearing loss to indicate that an ABR be done. They explained that the ABR was much more conclusive than a normal booth hearing test and that if Evy was deaf, the ABR would be able to identify to what degree. They let us know that Evy would have to be put under anesthesia during the test and that it would take a couple of hours. Here she is before they took her for testing.

We went to the hospital that day prepared for what we might hear. After all, we were there because we truly felt in our hearts that something was wrong. But as time passed and we sat in the waiting room, I started doubting whether or not I was really ready to hear the results.
When they brought us into Evy's testing room, we were greeted by a very groggy baby who was still coming out of the anesthesia. They said that Evy did very well during the test and then allowed us to comfort her for a few minutes before she asked if we were ready to discuss the results. I was shaky, nervous and already on the verge of tears because the look on the audiologists face didn't make me feel optimistic. She had a look of sympathy and sadness on her face. Even though she's done this for years, I can't imagine that it gets any easier to tell parents that their child is deaf.
I handed Evy to my dad so that I could focus on what she was saying and then reached over to put my hand in Kyle's. We were given pieces of paper with audiograms on them which showed the different degrees of hearing; normal, mild loss, moderate loss, severe loss and profound hearing loss. She showed us where Evy's hearing level was and then began to explain that Evy had a profound hearing loss; the most severe kind. She continued to speak but the only thing I heard after that was the word PROFOUND. It kept repeating in my head... and then she paired the word profound with DEAF. At that moment my heart ached, and suddenly my worst fears became my reality. Profoundly deaf? This can't be! As I glanced around the room, I saw Kyle, my dad and my mother-in-law all crying, I tried to hold in my emotions, but it was just too much. I suddenly wanted my baby back in arms. I wanted to kiss her and hug her and apologize to her. Everyone repeatedly told us this was not our fault in any way, but as Evy's mother, I still couldn't help but feel guilt. I hated that I couldn't change the situation, I felt helpless.
After the immediate shock, I thought ok, what now? Will she ever speak? Will she learn sign language? Will her life be normal? The audiologist spoke about our options and we were sent home with a folder full of information.
I cried the whole way home. I was supposed to go to work after that, but left after the first 5 minutes of being there because I just couldn't stop crying. My family, friends, co workers and bosses were all amazingly supportive but at that moment, no one could say anything that made me feel better.
After I came home, I eventually brought myself to look through the folder of information and started making calls. Over the next few days we had appointments to look at schools for the deaf. Although we liked them all, we knew immediately that The Moog Center was the right choice for us. After viewing the school and observing it's amazing students, we caught a glimpse of what Evy's bright future would look like and realized that Evy was going to be just fine! And we were right!
Evy is the sweetest, most intelligent, most determined little girl I know! She hasn't let this hold her back one bit! On September 19th, 2011, I felt devastated, like the world as we knew it was crashing down on us. Although I will never forget that day and how it made me feel, I also appreciate it because I know that it has truly made us a stronger family. Because of the news we got on that day, Kyle and I are better parents who love and understand each other a little more and Paityn is a more caring sister. Now that we've come so far, I couldn't imagine life any other way. I wouldn't change a thing. You make me so proud, I love you Evynn Reese!

Wednesday, September 12, 2012

Florida Vacation, Back to School, and Starting Dance

On Tuesday 8/29/2012, we left for our annual family Florida vacation. But this vacation was different than the previous ones because this was Evy's first "hearing" vacation! We made great family memories and had an amazing time! We enjoyed the ocean, sand, pool, sun, Disney World, and most of all, had a great time visiting family!

We started off by loading up the rental car and driving to Destin, Fl to see Evy's Great Grandparents!
Evy was so good on the way down, she slept the whole way! When we arrived in Destin, we didn't have the best weather because of the tropical storms, but we made the best of our time there and truly enjoyed spending time with Kyle's grandparents.
After a couple days in Destin, it was off to Sarasota, to see my Grandma. Luckily, the weather in Sarasota was BEAUTIFUL! We even got a little sun burn, but we were so excited to see the sun and didn't mind :)
Kyle, the girls and I had a ton of fun visiting with my Grandma, Aunt, Uncle and cousins. After that we headed to Clearwater to visit my other Aunt, Uncle and cousin. The girls had a blast at Clearwater Beach, and I could barely keep Evy out of the water!
There were a couple of times where I got a little sad knowing that Evy couldn't hear herself splashing or hear the waves rolling in, but every time I saw that huge smile on her face I knew that there was no reason to be upset. She was having too much fun for me to feel sad. One day when she's a little older and more responsible, we'll let her wear her "ears" on the beach. But for now, we didn't take the chance and she didn't seem to mind one bit. In fact, later on that day she embraced the silence and took a nice nap right on my chest!
The next day was the day we'd been waiting for...Disney World! Kyle and I had debated whether or not to take Evy since she is still so young. My Aunt offered to watch her for the day and we considered, but in the end we thought Evy would really enjoy herself and decided to take her. I am SO happy with our decision because Evy truly had the time of her life! She rode every ride that she was tall enough for and loved all the characters, parades, music, and lights.
When we arrived at Disney, we went to guest relations and asked if we could keep Evy in the stroller while going through the lines. From past experiences, I know that normally they require strollers to be parked outside of the attractions. Just the thought made me nervous because Evy walks around with over $20,000 in hearing devices on her head, so losing them at a huge place like Disney would be horrible! Disney's guest relations did not ask any questions, and without hesitation, came back with a "Guest Access" card. We didn't wait in a single line all day long! It made our trip a much smoother one and put our minds at ease. For once in her life, Evy's deafness was to her advantage for a day, and seeing her smile all day long made me so happy!
Evy got to meet Rapunzel, Cinderella and Belle!

Evy danced, waved, smiled and pointed out her favorite characters during the day parade.
And with her guest access pass, she was able to sit front and center for the night parade. She had the best time!
Evy made it all day long with only about a 45 minute nap in the stroller, I was shocked! She was a trooper and stayed awake until we got settled at the hotel, but when she passed out for the night, she sure did sleep good!
We spent the next day at Downtown Disney and then headed back to St. Louis. We all had a wonderful time on vacation, but we were pretty anxious to get back to our own beds!

When we got home we jumped back into our normal schedule. I had 4 more days off, but Kyle went to work, Paityn went back to school and Evy had her first day of school at Moog for the new school year. I thought she might give us a little trouble getting back into the routine, but she walked right on in and was very excited to be back. She had a wonderful day!
Evy also just started dance and had her very first class on Monday. She LOVED it...and looked so stinkin' cute in her dance outfit!
Evy has also been doing incredibly well with her speech and vocabulary. She is talking more than ever and her little personality is really starting to show. It seems like she matured overnight! Her new favorite word is "No!" Every time I say something that she doesn't like, her response is "No!" Although it's not always what I want to hear, I can't help but smile at her efforts to be bossy, sassy and independent. It's just too cute :)