~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!

Sunday, March 17, 2013

Catching Up!

Ok, a blog update is way, way overdue! So much has happened since the last time I updated! We had a wonderful holiday season and then jumped right into Evy's first hearing birthday! On 1/25/13 we celebrated the 1 year anniversary of Evy hearing sound for the very first time. It was a special day filled with friends, family, love and happiness for our sweet Evy!

We have also had some pretty crazy weather lately! Since Evy hadn't really ever played outside in the snow, we took advantage of it this winter! Even though she could barely move in her snow outfit, she had so much fun sledding and playing outside. Of course I was a nervous wreck about accidentally losing her implants somewhere in the snow! I had her hair up in a ponytail, then put her implants on, put two headbands over them and then had two hats on her. Every time she went down the hill, we'd lift her hat to check that they were still in place. All was fine though, and we made it though the day with no scares! It was a great day with lots of memories made!
Evy has been doing absolutely wonderful at school! I just couldn't be more proud of the progress she's making! She's trying so hard to communicate with everyone and constantly works hard to learn new words and perfect old words. For example, the word "baby" was being pronounced ee-ee for a long time because Evy couldn't pronounce the 'B' and 'A' sounds together. But she worked hard quickly mastered it. Seeing her learn new words and then use them will just never get old!
Evy is also very into watching movies now and has become quite obsessed with Finding Nemo! We watch it multiple times a day and she demands to see it nightly at bedtime. She even carries her Nemo stuffed animal around everywhere. Kyle, Paityn and I have pretty much memorized the movie now and although we may be tired of watching it, I cant say no to her because its just SO cute when she says "Nemo, where are you??"
Although her implants have been working amazingly, Evy has still been having lots of bad ear infections. Back in November she had new tubes put it in and her adenoids out, but it hasn't seemed to help much. Hopefully when the weather gets nicer and the "sick" season is over, we won't have to worry as much. For now though, her ENT felt she should have her tubes taken out and start a month long course of two oral antibiotics, so that's what we did.
The older she gets, the harder it is to put her through these small surgeries. At the hospital, she kept telling all the nurses that walked in the the room to "Get outta here!" Trying to get her to take the daily antibiotics is a whole other battle, but it's getting better! Although it's a tough thing to deal with, I know we are doing the best thing for Evy, and that's what I have to keep reminding myself!
Other than that, we've just been hanging out, waiting for Spring to finally arrive! I have so many fun things planned for Spring and Summer this year, so come on, we're ready!!

Wednesday, December 5, 2012

Happy 2nd Birthday Evy!!

On November 1st, our sweet Evy turned 2!! I can't believe it, where has the time gone??? It feels like only yesterday that we were here...

 I took off work on the day of her actual birthday so we could make the most of it and because your baby only turns 2 once, right?!

We started off by taking Evy to school- in the adorable birthday outfit I made her, of course! Later on that day I brought treats up to school for Evy, her friends and her teachers. They sang "Happy Birthday" and then enjoyed cupcakes.
Afterwards, we went to the mall where we had lunch and did some shopping. It was a wonderful day and I'm glad that I was able to spend every minute of it with her!

 About a week later, we had her birthday party. Evy had a Disney princess party and her and all of her guests dressed as their favorite princess. They were all so cute!
It was great to have all of her friends there, as well as some of her Moog friends with cochlear implants! In the end, a good time was had by all and Evy loved it!
In my last post, I mentioned that Evy was going to have another surgery to have her tubes replaced and get her adenoids out. It was a rough day for us all but Evy's surgery went well and she had a pretty easy recovery. Here we are in front of the giant Christmas Tree at Cardinal Glennon before her surgery.
Since everything has gone fairly well since the surgery, her ENT has said that we won't need to see him for another 6 months. Thank Goodness! Not that I don't love her ENT, because I do, but I'm more than ready to be done with all of the sickness!
Besides staying busy with all the normal stuff we are also getting ready for the holidays and Evy's first hearing Christmas! She gets so excited when we talk about Santa and the Christmas Tree. I think this year will be our best yet! Here's Evy and Paityn visiting Santa at my work last week.
All of Evy's teachers have noticed, and we have too, that her speech has just really taken off since she turned two. She is now using 2 and 3 word combinations almost all the time. Most of what she says is "I want" ...Banana, juice, baby, etc. Or "I want more"...
It is so exciting to hear all of these amazing things from the mouth of my child, who just a year ago had never heard anything. Just amazing! Couldn't be more proud of this girl!
I'll leave you with a cute little video of Evy asking me for her favorite...Bubbles!!!

Wednesday, October 31, 2012

Fall 2012

So much has been going on! We've been staying pretty busy and I need to catch up on my blogging!

Evy has been doing wonderful at school and her speech and vocabulary continues to expand! As she approaches her 2nd birthday (tomorrow) we anticipate that this will be a BIG year for her!

On 10/6/12 we participated in the St. Louis Walk4Hearing, which was a wonderful experience! Many of our generous friends and family members donated. Team Evy, on behalf of her school, raised $960 for a great cause! Many thanks to those who donated or joined us in the walk. Here's some pics!
We also recently took our yearly trip to the pumpkin patch, which was a ton of fun for us all! The only setback occurred shortly after arriving. We were taking pictures when all the sudden, my sister noticed that one of Evy's implants was missing! It had fallen off somewhere, so we began frantically searching and retracing our steps. Finally, after about 15 minutes and a small heart attack, I found it on the ground! Thank goodness! Evy usually tells us when something isn't right, or one falls off but she was so caught up in everything going on around her that she didn't stop to let us know. Minus that incident, we all had a great time!
In other news, we are currently in the middle of finding out the cause of Evy's hearing loss by seeing a geneticist. Although it won't change anything, it will give us piece of mind to know exactly what the cause is. Soon, we will hopefully be doing a blood test to get confirmation. We're hoping to get her blood drawn on November 14th, when Evy goes in for another surgery :(

Evy had not been feeling well lately, so after a trip to see her ENT, it was decided that she will need her tubes removed and have new ones put in. He said that after so many ear infections, the tubes can develop a film of bacteria on them, which causes infections more frequently. So this will be her third set of tubes... fingers crossed that we won't need another! The doctor will also take her adenoids out that day, since she will already be under anesthesia. He said that her adenoids just harbor bacteria, and again, only cause more frequent infections. Because of her implants, the adnoidectomy will be a little more difficult than usual. Normally, the ENT would use cauterization during the surgery, but cannot use it on Evy because it could cause her implants to stop working. The ENT will have to use special tools, which might cause her recovery to be a little rougher, but she's a strong girl and I know she'll do fine! This is her fourth time going under anesthesia in the past 15 months, which scares us a bit! Hopefully this is the LAST time and we can get Evy healthy!

Anyways, Evy had her school Halloween party today at Moog! She had so much fun trick or treating around the school and I really enjoyed watching her and all of her adorable friends collect candy! I'm sure she will enjoy tonight's trick or treating just as much! I can't wait to take them out!

Tomorrow is Evy's birthday! I can't believe that she turns two years old tomorrow! Over the last year she has changed from a baby to a beautiful, smart, amazing little girl! I am so proud of you Evynn Reese!

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 :)  


Wednesday, August 1, 2012

6 Months of Hearing!

On the 25th of July, Evy celebrated 6 months of hearing! I can't believe that the stress and anxiety of surgery and activation day was so long ago, time has really flown by. Thanks to Evy's hard work, our constant pushing and her school's dedication to helping Evy learn to speak, all of the pieces to this puzzle are finally starting to come together. I am just so thankful to be where we are at this point and I can't wait to watch it get even better!

 Starting in September, Evy will go to school 3 days a week from 8:30am to 12pm, which is a day more a week than Summer school. I am really anxious to see just how much her speech and language takes off after that! But for now we are just practicing a lot at home and with her teacher.

Lately we have been practicing the "ling sounds". The 6 "ling sounds" are different speech sounds that vary from low to high pitch. By having Evy repeat the sound, it helps us to know that Evy detects speech at all the levels, which are all necessary for learning proper speech and language. The ling sounds are:
ee (fEEt)
o (hOt)
oo (shOe)
s (Splash)
sh (fiSH)
m (Mama)

When her school told us that Evy was now doing this effortlessly, Kyle and I decided to try it at home. As you will see in the video, I have Evy sitting on my lap and I am saying the sound and expecting Evy to repeat it. I am bribing her with an M&M, that she will get after she's done repeating the 6 sounds. Apparently, I wasn't going fast enough. She wanted that candy NOW, and did not appreciate me keeping it from her!

Needless to say, Kyle and I couldn't help but laugh. But no matter how frustrated she may get with me, I won't ever stop pushing her to learn, even if it means I have to occasionally take a slap to the face! I think she will thank me for it someday :)