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!
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 :)
Throughout her journey to hear, Evy has soared above and beyond our expectations in every way possible. She sure is one strong, determined little girl. I'm often amazed at her strength, but I don't ever wonder where she's learned to be this way.
Evy's older sister, Paityn, is a sassy, strong, talkative, smart, persistent, stubborn, sweet, amazing little girl who loves her little sister unconditionally. With tomorrow being Paityn's 5th birthday, I thought it was the perfect time to recognize her for all that she does and all that she is. Paityn has definitely gone through the normal feelings of confusion and jealousy and she doesn't always understand, but her maturity through all of this has really surprised me.
Paityn pushes Evy around just enough to give her that "thick skin" that I'm sure Evy will someday need, but still shows enough affection for Evy to know that she is loved. Although Evy gets plenty of love from everyone around her, there is something special about the relationship with a sister; it's something only Paityn can give her. Though she doesn't always realize it, Paityn teaches Evy to be fearless, determined, strong, silly and beautiful in every way. Evy just wouldn't be the same without her big sister's influence, so today I want to say I love you, Paityn Taylor!! Happy Birthday and thanks for being YOU!!
Last year, The 4th of July left us with mixed emotions. We had not yet found out that Evy was deaf, but we definitely had our suspicions. She had not passed her newborn hearing test, but did show "signs" of passing at her follow up hearing test. We were told to wait and follow up if we felt like she was developmentally behind. So the waiting and wondering began and over the next few months there were times that we swore she could hear everything and other times that we just knew something wasn't right.
One of the days that stands out most in my memory is July 4th, 2011. After a day of fun with our family and friends, we were anxiously waiting for the fireworks to start. As soon as they started, Kyle and I were shocked that Evy laid peacefully in our laps through the entire firework display, without startling at all. We were confused and scared, but ready to face the reality of the situation. Although Evy's first 4th of July was very special, I will always remember it as the day I accepted that something might really be wrong with Evy's hearing. This year, I am so proud that we have a daughter who is not only hearing, but also thriving! Here is Evy last year- 7/4/2011, enjoying the festival. Always such a happy girl!
We've come a long way in just a year and we are so glad that this 4th of July was a much different experience for us! Here's some pictures of our day!
Evy absolutely loved the fireworks, and being able to see her face light up meant the world to me. I am so thankful for her implants and for all of the simple things in life that she is now able to enjoy! Here's the video of her hearing fireworks for the first time!
From June 12th through the 16th, we attended The Moog Center's Parent Workshop, and had a wonderful time! Even though we were already very familiar with the school, we thought attending the workshop would be perfect for Evy since she would be starting school the following week. It was a great introduction for her and I, and gave us both an idea of what her days at school will be like. I also got some helpful tips for me! The other children that attended won't actually be in Evy's class since most of them were visiting from out of state, but we both still made some friends. It was so nice to talk with other parents about both the joys and struggles that we endure throughout this sometimes tough but very rewarding journey!
Paityn was also able to come along and hang out with the hearing impaired kids her age. I think it was really great for her, because sometimes I think she questions whether or not Evy will really be able to talk and play with her. It's hard to explain to a four year old that these things take time! But after having some quality play time with her hearing impaired peers, I think she got a glimpse of what her and Evy's near future will look like!
I am so thankful to be a part of the Moog Center! The staff is wonderful and what they teach deaf children and their parents is truly amazing! Last week at the workshop I realized just how lucky we are to have Moog so close. So many families have moved here just to be a part of the program and other families often spend time in 2 different homes in order to be here for school during the week and then drive home on the weekends. I am so appreciative for the services and wonderful teachers that are available to us everyday, all while being surrounded by our family and friends!
Every morning I dropped Evy off in her classroom at 9am where she would play and do activities with her peers and teachers. Then for an hour she would work 1 on 1 with her therapist. Initially at drop off during the workshop, there were some tears and she didn't want to see me leave. But after a day or so, she got comfortable with her teachers and the daily routine, which made it much easier for us to drop her off today for her first day of school! Here's us heading inside on the first day of workshop.
I could tell that Evy had worked really hard at school on the first day. That night I went upstairs around 7pm because I thought it sounded too quiet. Evy had been playing with her sister, but when I went up, this is how I found her. Passed out in the hallway...
I think it's safe to say that she was exhausted! We enjoyed the rest of our weekend and before we knew it, the big day was here!
Today was Evy's first day of school! For Summer school, Evy will go every Wednesday and Thursday from 9am - 12 pm. Here's a picture from this morning!
We dropped her off and she walked right on in to the classroom! They said it's usually best for the parents to make a quick exit so that none of the kids get upset. So that's what we did, and Evy was fine with us leaving. The class starts off by working as a group and having "circle time" then each student does a 1 on 1 activity with the teacher. At some point during the day Evy also gets pulled out of class for an hour of 1 on 1 with her therapist.
Today, it just so happened that Evy was due for an audiology appointment as well (she has audiology about twice a month right now). I thought it might be a longshot to expect her to cooperate after her first day of school, on top of it being nap time... but I was wrong! She did an amazing job in audiology today and they were able to get a lot of good information. When they see Evy for audiology they work on mapping for her implants. This requires Evy to sit in a highchair and listen to a series of "beeping" noises through her implant. They have trained Evy to look to her left everytime she hears a beep and when she looks, they turn on a little duck that moves. Even though she has one implant on during the session, while they are testing, all the background noise is turned off and the only thing Evy can hear are the beeps.
Considering where we were 5 months ago, Evy has gotten SO much better at this process! She used to only work while sitting on our laps, and even then she got fussy and didn't cooperate for long. She was also very scared for any unfamiliar person to touch her ears or get too close to her. I took a couple short videos of Evy's session today to remind myself of her progress because I am truly amazed at how far she has come!
Well, the Summer has started off great! Evynn LOVES to swim, we can hardly keep her away from the pool! With this being our first summer with Evy's implants, Kyle and I are constantly stressing about them while we're out, especially at the pool. I didn't mind her wearing them in the small pool in the backyard, but I'm not quite brave enough yet to let her wear them in the big pool! Evy's just too daring, and I'm afraid that she'll just dunk her head right under. I know that this whole process will get easier and we will eventually get a routine down, but for now, it's a little hard to relax at the pool. But...as you can see Evy seems to have no problem!
Right now Evy really doesn't mind if we take her ears off because she's just too busy, but I know that eventually she will want to play with her sister or other kids while swimming and will really want them on. I see how much fun she is having without them and often think about how much MORE fun she would have if she could hear everyone. It tends to break my heart at times, but then I look at my happy baby girl who wears a constant smile, and I realize that if she can put a smile on her face through her struggles, then so can I! Her strength can always get me through any feelings of guilt or sorrow. Her face can cheer anyone up! There is one positive thing about Evy not being able to hear though. On a recent trip to the lake, Evy was able to relax with me on a raft, regardless of the chaos. We took a nice, peaceful nap and didn't mind the noise one bit! :)
Evy's been very good about leaving her "ears" on, however... she has figured out that taking them off is the best way to get our attention. For example, Evy wanted something out of the fridge the other day and when we told her no, she took her ears off, and threw them at us. After that didn't get her what she wanted, she proceeded to lay herself out on the kitchen floor and throw a fit. I guess it is typical behavior for her age, but she is clever in the way that she uses her "ears" to get what she wants! What a stinker!
Evy's speech and language continues to amaze us! She's learning and understanding more and more words. Her teacher said Evy's attention span has gotten so much bigger, which means there is more listening and learning going on during her therapy sessions. There's still a ton that she cannot say, but she does recognize words when we say them. For example, she can't say "jump" yet, but when we say it, she knows what to do! She has also taken more of an interest in music and movies too! Evy's big sister Paityn had her first dance recital recently and Evy absolutely loved watching it! She was dancing and laughing and enjoyed it so much that I we have decided to enroll Evy in dance as well! Here is a little video we took of her enjoying the recital!
We all had so much fun and I'm glad that Evy was able to join in too!
On another note, my sister Lyndsey is an amazingly talented photographer and lucky for me, she is constantly taking pictures of my kids! Here's a few that I love :)
Hope everyone is enjoying their Summer as much as we have so far!!
So much has been happening here in the Grubb house! Evy is learning many new sounds and words. Every week when her teacher leaves after therapy she says "I think today was the best session yet!" She keeps moving right along with her listening and speaking. Right now she is attempting to say about 1-2 new words a week. Her vocabulary now includes Mama, More, Dada, Bye Bye, Eat, Cheese, Yeah, Wee and Up. She even tried putting two words together for the very first time! She took Mama (which she has been saying for months) and put it with Bye Bye. Obviously her "Bye Bye Mama" was not completely clear, but her attempting to put them together was a big step! Right now she mostly just focuses on the vowels in the words, for example Eat is mostly just Eeee and Up sounds like Uhhh, but she is making some serious progress and everyday she surprises us with a new attempt at a word. She is also doing surprisingly well wearing her implants without her headband!
There is nothing more precious than working with her and seeing her eyes completely focused on me, just soaking everything in like a sponge. I just love watching her, knowing that the little wheels in her head are turning and she is truly learning something new.
Evy has had a few "firsts" in the last month. She had her first trip to Chuck E. Cheese, which I was nervous about. I was afraid that she would take off and want to run all over the place, which would make me nervous about her implants falling off, but she was surprisingly good and wanted to people watch more than anything else. She had a great time going on the rides, playing games and watching all the kids around her.
Evy also went to her very first Cardinals game on 5/2/12. We knew to expect the normal 18 month old behavior, such as not wanting to sit in her seat, which inevitably happened, but I was most worried about the noise. Our seats were very close to where they shoot the fireworks off after a home run. I thought that the firework noise combined with the cheering would frighten her, but it was quite the opposite! She was laughing, clapping and really enjoying it all. It was adorable! The game was a 7:30 pm game, so I thought she would eventually get tired and fall asleep in our arms, but nope! She stayed up until we got into the truck to go home, just watching everyone and enjoying the chaos. Although stressful at times, we made family memories and had a great time!
On 4/28/12 we had our first play date with a fellow CI family! Evy, Paityn and Sophie had fun playing at Brendan's Playground together, and I had a nice time talking with Sophie's parents about school and other things that we will be approaching in the near future. I look forward to more of these play dates and watching Evy and Sophie go through their exciting journey together!
Last weekend we had our first swim of 2012! Of course the biggest debate was whether or not to let her keep her implants on as she played in the kiddie pool. I decided to let her keep one implant on. I was pretty tense the whole time, but I watched her closely and she did very well. I actually think she enjoyed swimming more since she could hear us!
We are all signed up and very excited for a convention at Evy's school that will take place from June 12th - June 16th. The children will attend workshops and do lots of fun activities together, while the parents attend seminars on how to help our hearing impaired children. I'm sure it will be very informative for me and great for Evy since the following week she will start attending school at The Moog Center!
So much to look forward to over the next few months :)
Today Evy had her weekly session with her deaf educator. Both her teacher and I were quite impressed with how well Evy did! Since she has now mastered saying "Mama," her teacher said we should start working on getting her to say other M words such as "more" and "milk". We were very surprised at how well Evy did with imitating sounds.
Her teacher would give Evy a mini M&M and then when Evy would reach out for more, the teacher would withhold it and ask Evy if she wanted MMMore? Initially Evy fussed and wanted the candy right away, but she eventually repeated the MMM noise, indicating that she wanted more! Of course we would applaud, and then Evy would proudly clap for herself!
After her teacher left, Kyle and I decided to try doing this exercise ourselves...and it worked! Her teachers always joke, saying that Evy strictly works for food! And they're right, Evy will pretty much do anything for an M&M!
