~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!







Wednesday, January 25, 2012

Activation Day! 1/25/12

Today was one of the biggest days of Evy's whole life; she had her cochlear implants activated! It was a very emotional day, but overall went well! Evy woke up in a great mood. She had a bath and then at about 7:30am, we headed out to Cardinal Glennon to meet with the audiologists.
When we got started, the audiologists had Evy sit in my lap while they put her implant on for the first time.


 Evy's internal device has electrodes which are threaded through her cochlea. Below is a picture of what the cochlea looks like.

The electrodes are threaded through the cochlea so that Evy gets all the ranges of sound. The audiologists began with the right ear, and had to start with testing each electrode to make sure they were getting a response. After they got a response, they used a computer to send beeping noises to her implant. They gradually made the beeps louder until Evy reacted as if she heard it. They look for a behavioral response from Evy to know that she heard it, but also want to also make sure that she doesn't squint or startle, which would indicate that it is too loud. When they were able to establish a level of sound that was comfortable for Evy, they officially turned the implant on and she was able to hear everything around her! Evy definitely showed signs that she could hear us, it was pretty exciting!

After the right ear, they did the same exact thing on the left ear. She did very well with the left ear too, and before we knew it, they were ready to turn both of the implants on at the same time. As soon as both implants were on, Evy became quite scared and overwhelmed (on top of it being past her lunch/nap time!) She was really upset at that point so we wrapped things up and Evy went on a wagon ride through the hospital while the audiologists sat with Kyle and I to teach us how to use the implants and all of its accessories. It was information overflow and we felt nervous to bring Evy and all of her new gear home! There is so much that goes into taking care of the implant and its equipment, but it's still all new to us and I'm sure that soon enough we will be using it effortlessly.


Although we were very much looking forward to this day, it was as difficult as it was rewarding. I was happy for her and proud that I was finally seeing her hear, but watching her get confused and upset was hard. The rest of the day after we arrived home was better. I could tell she felt more comfortable at home and she was excited to play with her noisy toys! She would look at the toy and then look at me like she was thinking "Huh, this has made noise all this time?" A few times, while she was playing we called her name and she turned around without us having to tap her to get her attention.


Those little things, that most take for granted put a smile on my face and made me forget about the stressful moments of the day. The best moment, however was when I sang Evy "Twinkle Twinkle Little Star" tonight and I knew that she heard me. I have been singing to Evy since she was born, even when I knew she couldn't hear me, so tonight when she calmed as she heard my voice I wasn't sure if I wanted to smile or cry, but I am sure that it was an amazing feeling!

There will be hard times during Evy's journey, that's for sure. Hard for Kyle and I as parents, when we have to be "the bad guys" in order to make her future the best it can be. Hard for Paityn, who will sometimes feel that she is not getting the same attention as her little sister, and hard for Evy who will always have to work harder than other kids her age. The tough times won't be easy, but the good times will always be that much more rewarding and we are all stronger for having gone though this. One thing I know for sure is that there is definitely no shortage of love in this family, and that makes us very lucky!

Sunday, January 22, 2012

A Week For "Firsts!"

We have quite an exciting week ahead of us! On Wednesday, 1/25/12, Evy's implants will be activated and she will finally be able to hear! We have been waiting for this moment for SO long,  and I can't believe it's so close! To prepare for the big day I bought Evy a new "activation day outfit" (perfect excuse to shop), and we went online and ordered her a special headband which makes it easier for her to wear the cochlear implants. Since I have been so anxious for the 25th, my dreams over the past few nights have been completely consumed with thoughts of activation day. Will she be happy and smile, or will she be scared and cry? I don't know what to expect, but whatever her first reaction to sound may be, I know that it will forever be one of the most special days of our lives! I can't wait to catch every moment of it on camera and let her watch some day.

Speaking of catching special moments on camera, we got a pretty special one tonight. Evy has been taking "baby steps" for months now, but was a little too scared to really take off and go for it. Well, today she took those first "real" steps, and it was so exciting to watch! We think it is amazing that she will have reached two major milestones in one week, and we are so proud of her! I know she has many more accomplishments to come in the next year or so and I can hardly wait to watch!  Here she is taking those first steps... Go Evy!!!

video

Monday, January 16, 2012

Evy's Surgery Day!

Here's a little video that I put together of Evy's surgery day, Enjoy!

Sunday, January 15, 2012

Cochlear Implant Surgery Day- 1/11/12!

1/11/12, the day we've been waiting for has finally come and gone! It was a long day filled with every emotion possible, but I wouldn't have changed a thing about it. The day started with a 5:30am wake up call. Evy is like me and LOVES to sleep, so she knew something was up when it was still dark as we woke her. Regardless, she woke up with that wonderful Evy smile on her face, ready to get the day started. She relaxed on our bed and had some juice while we got everything ready to go.
After 6:30am Evy couldn't have anything to eat or drink. She was a little upset about not getting a real  breakfast, but was quickly over it and was all smiles the whole way to Cardinal Glennon. In fact, she was so happy that Kyle and I almost felt bad because she had no idea that today would be so hard for everyone. But we reminded each other of the many reasons why we want this for Evy and quickly pulled ourselves together.

We got checked in at the hospital, then they took us to a room to get her changed into her hospital gown. The nurses got all of her vitals and soon after, the anesthesiologist and Dr. Costa came in to speak with us about how the day would go. They asked if we had any other questions, but my mind went blank. I asked a couple things that I pretty much already knew the answer to and then said "Ok, we're ready!" A nurse came in after that and gave Evy some medicine that would help with separation anxiety when they took her back to the operating room. The medicine made her feel comfortable and she was pretty funny to watch for the next few minutes. She was carefree, happy, and even did some dancing for us! Then came the moment we had been dreading. The anesthesia team came to the room and said they were ready for her. We walked her back as far as we could, then the doctor reached his arms out to take her. My eyes filled with tears, and my heart broke. I wished I could do it for her and I knew Kyle felt the same, but we knew she was in great hands. Luckily, Evy went right to the doctor and made it easy for us. She went through the doors and didn't look back. It felt as though she wanted to say bye guys, I'm comin' back with new ears, see ya in a few! We felt more confidant then ever with our decision and headed to the waiting room for our LONG day!


The nurses called from the operating room every 2 hours with updates. Every time the phone rang we anxiously waited to see if it was for us. The secretary would call out "Evynn Grubb's family?" and we would quickly head over to the phone. Luckily, every update was a great one and the nurse always said "Evynn is doing wonderful!" We occupied ourselves with magazines, cards, snacks, computers and conversation. Kyle and I were so lucky to have our support system with us! And yes, we took up about 1/4 of the waiting room!


 The day went on and one by one, each family left. By 6pm we were the only ones still waiting! The custodial team had even come in to clean and that's when we started to get anxious to see our baby! Finally, at 6:20pm, the nurse made her final call and said that both implants were in, Evy was doing great and that we could see her in thirty minutes. We were SO relieved! We started getting our things together and making sure the camera and video camera were ready.

Dr. Costa came to the waiting room and explained how the surgery went. After he was done I started crying tears of happiness and said "Can I just give you a hug?" We are so thankful for him and what he has made possible for Evy, we just can't thank him enough! I asked if she was crying or upset and he said not yet, she actually woke up and started waving to us and blowing kisses. Kyle and I laughed and said "Yup, that sounds like Evy!" In the recovery room Evy had 3 nurses with her and each one kept telling us how sweet she is. When we went in to see her she was pretty swollen and still a little out of it, but being with mom and dad was exactly what she needed! We held her for a few minutes in the recovery room while the nurses down the hall prepared the room where we would spend the night.

When we got to the room we were all pretty exhausted. Evy got some pain medication, then laid down for some rest and Kyle and I shortly followed. That night was a little rough. Evy was up every few hours and nurses were in and out of the room checking her vitals all night, but by morning Evy was already starting to act like herself again. Around 8am Dr. Costa came in and took her bandages off. We were amazed at how great the incisions looked. Dr. Costa didn't even have to shave any of her hair during the procedure, he used a special glue to keep her hair out of the way.

Dr. Costa said that Evy looked great, and that we were ok to leave whenever we were ready. With his say so, we started packing our things to leave. The only problem was that it had snowed over night and the roads were horrible! We stayed at the hospital until about 10am and waited for traffic to clear, but it still took a little over 2 hours to get back home (normally a 40 minute trip). Regardless, we got home safely and Evy, Kyle and I were happy to see Paityn who had been anxiously awaiting our arrival.

Evy has done an amazing job recovering and pretty much seems to be back to her normal self already! She was sent home with a pain medication but we have already stopped using it! We are so very proud of how strong Evy has been through all of this. With the scariest part behind us, we are looking forward to January 25th, when the audiologists will activate Evy's implants and she will join the hearing world for the very first time. I love you SO much Evynn Reese and I cant wait to watch you do wonderful things!




Thursday, January 5, 2012

Just a Little Extra Info...

Everything has been happening so fast! I suddenly realized that I have been so excited about Evy's surgery that I didn't do too much explaining about what a cochlear implant is and what the doctor will actually be doing during Evy's surgery.

We first heard the words cochlear implant the day that Evy had her ABR test done in the hospital. While she was waking up from anesthesia, the audiologist who had been reading the test asked if she could come in and talk to us about the results. After she gave us the news that Evy was profoundly deaf in both ears, Kyle and I blankly stared at her with tears in our eyes and said "Ok...What do we do now?!" We were shocked when she told us about all of our options. We immediately thought that Evy would learn sign language and possibly never speak, but then the audiologist told us about cochlear implants. She let us know that it would be a long process and that we had lots of steps to take before getting Evy an implant, but it left us with a lot of hope for Evy's future. All hearing impaired children have their hearing tested multiple times and are required to have a trial period with hearing aids before getting implants, to be absolutely sure that implants are the best choice. Four months ago I knew absolutely nothing about hearing loss and now I feel like a I could practically teach a class on it! We have certainly done our homework, and know we are ready!

At this point we are unsure of the cause of Evy's hearing loss. After surgery we will have to see a geneticist and Kyle, Evy and I will have to do blood work to be sure. Her doctor suspects it is a mutation in the Connexin gene. Connexin 26 is the most common cause of nonsyndromic hearing loss, and since Evy has had no other health issues since birth, this is likely the cause. We are told that it is reassuring if this is the cause because it will mean that there is no other syndrome or illness that has caused Evy's hearing loss. Basically, about 1 in 30 people carry this flawed recessive gene, and if both parents are a carrier, there is a 25% chance of having a hearing impaired child. For instance, our other daughter, Paityn could be a carrier of this gene and not be affected, or she could not be a carrier at all. Although it won't change anything, we will still find out the cause so we can rest assured that Evy is 100% healthy.

 There are different degrees of hearing loss; minimal, moderate, severe and profound. At first we felt discouraged that Evy had the worst degree of loss, but then the audiologist explained that Evy's situation did have some positive aspects. She said if your child has a hearing loss, you either want it to be a minimal-moderate loss, or a profound loss. Children with minimal-moderate loss can have their hearing improved with hearing aids and children with a profound loss usually become candidates for a cochlear implant. She explained that children who are in the gray areas in between often have more difficulty because hearing aids don't provide them with enough benefit but they don't quite qualify for a cochlear implant. We found some relief in this and since we knew she would likely be an implant candidate, we quickly began our research to see whether or not the implant was something we wanted for Evy.

The first time we toured her school, The Moog Center, our hearts melted as we watched all of the children talk and play. A few times I found myself staring at the kids, looking for an implant or hearing aid because I couldn't believe they were hearing impaired! I was stunned by how amazing these children were, and my immediate hope was that Evy benefited and thrived just as much as these children had.

True, it's a very scary thing to think about your child having a major surgery, but after seeing the proof right in front of us, we knew this was the right choice for our precious girl! Below I have posted a picture of what the implant looks like.

The picture on the left shows what will actually be implanted and the picture on the right shows what the external piece will look like. They will start by making a small incision behind her ear, then he will drill a hole through and thread the tiny electrode through her cochlea. Next he will need to hollow out some bone from the skull in order to keep the internal piece from moving inside her head. During surgery they will hook her up to a machine to make sure they are getting a response and to see that the device is in correctly.  Lastly, he will suture the incision. She will likely need to have some hair around the incision area shaved, but he says he will make it as minimal as possible. The external piece shown in the picture on the right will not be worn until 2 weeks post op, allowing time for swelling to go down and for her sutures to heal. The implanted device will have a magnet which holds the external piece in place. Evy will take off her external device when she sleeps, swims or bathes and when it is taken off, Evy will not be able to hear anything. We will not control the sound level on Evy's implant. Her audiologists will constantly be working with her and programming the implant so that it's perfect for Evy!

There are always certain instances where a child ends up needing their implant removed at some point for various reasons, but if all goes as planned (and I know it will!), then Evy will always have the same internal device. As the years go on and technology progresses, the implant company will make advances in the external processor which will communicate with what is already inside.

People often tell us that we're handling the situation well and that we keep a very positive attitude, but the truth is that I don't have a choice. I can't be any other way about it and stay sane! I definitely have days where I'm almost in tears while staring at my planner and seeing all the dates of therapy, ENT and audiology appointments I have written down and scratched out and rewritten. Our schedule is crazy and I constantly have a million things on my mind, but if I let every little thing get to me I would drive myself insane! When I sit back and look at the big picture I realize that I have so much to be thankful for. This whole situation has and will continue to cause some tough times for us, but it's nothing we can't handle!  I know that the rewarding moments will surely outweigh the tough ones and when we look back, those will be the times that we remember!

Tuesday, January 3, 2012

Pre-op...Check!

Evy had her pre-op appointment today with her ENT surgeon. She had been running some high fevers lately and we were a little nervous about whether or not the doctor would want to postpone the surgery. After a negative influenza and strep test and a normal chest x ray, we suspect that it is probably her teeth giving her trouble.

We are happy it's nothing that will keep her from moving on with the surgery at this point, but the worrying isn't over quite yet. The hard part will be keeping her healthy for the next 8 days, and anyone who has kids knows that this is no easy task! Anything can happen in a week so we are going to do our best to keep her inside and away from anyone who might be sick. If she should have any fevers or cold symptoms before the 11th, we would need to call him immediately to reschedule for about 3 weeks later.

We obviously can't wait for the surgery and don't want to put it off, but ultimately we want everything to go as smoothly and safely as possible for Evy. So, if anything happens and surgery gets postponed, we will know it's for the best! After talking with her surgeon today, I know more than ever that we are SO ready for this...  1 more week!!!