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!!!

 

 

 

 

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!

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!!!!

 

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!

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 :)  

 

 

 

 

 

 

 

 

 

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 :)

One For The Big Sister

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!!

My, How Far We've Come In A Year!

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!

Moog Workshop and Evy's first day of school- Summer 2012

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!

Summer!

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!!

Moving right along...

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 :)