~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!

Thursday, December 29, 2011

Recuperating from the Holiday Fun and Trying to Stay Healthy!

Wow, we had an awesome Christmas! We spent time with our amazing families, ate lots of food and got some pretty nice gifts too! Kyle and I absolutely adored watching the girls get excited over their presents. Ok, so Evy liked the wrapping paper more than the actual gifts, but still... she had a blast!

Our greatest gift will come on January 25th when Evy's cochlear implants are activated and we get to see her face as she hears our voices for the very first time! We can't wait!

 Now that the holidays are about over with, we are definitely realizing that surgery day will be here before we know it... less than 2 weeks! We are excited, nervous, overwhelmed, scared, anxious, hopeful and just about every other emotion a human being can feel. But we know it will all be worth it.

Right now we are extremely focused on making sure that Evy STAYS HEALTHY! Although her surgery date is set, if she gets sick at all between now and then, they will have to postpone surgery until she is healthy again. She has a little bit of a cold right now, and since she is very susceptible to ear infections, we're a little worried! With the cold weather and viruses that are around this time of year, there is little we can do to hide her from it, aside from keeping her in a plastic bubble. (Which I would do if it were possible!) We don't want anything holding us back from our new start, so we ask that everyone keep Evy in their thoughts!

The year 2011 has had it's ups and downs and we have definitely been through a lot! Kyle, the girls and I, are very lucky to have each other and lucky to have an extremely supportive family and great friends! Without all of you, this process would have been much harder on us. Even though we don't get a chance to tell you everyday, we are so very thankful! 2011 was rough, but we have SO many exciting things to look forward to and I just know that 2012 will be OUR year!  

Monday, December 19, 2011

Getting Closer...

The other day I was giving the girls a bath together when Paityn stopped what she was doing and said "Mommy, when is Evy going to start talking?" This kind of a question from my four year old would usually make me a little sad and lost for words. Although they are very close and have their own special ways to communicate, I know that they can both tell that there is something missing. I would normally be searching for an answer to give that would help Paityn better understand, but this time I didn't have to. I quickly and proudly replied ..."SOON!" It felt good to say that word and know that I meant it! All of our relentless pushing, researching, testing, and hard work has finally paid off! I know that we have a long road ahead of us and that perhaps Evy's hardest moments will be after her surgery, while learning to listen and speak through intensive therapy.

We received a list of dates from her ENT surgeon that we're pretty excited about. On 1/3/12 we will see the doctor for a pre-op appointment so he can take a look and make sure that Evy is in good health for her surgery. Then on 1/11/12 we will go in for her actual implantation. The doctor said the surgery will take about 8 hours and afterwards will need to stay the night at the hospital to be monitored. If all is well, they will discharge her the next morning. This will surely be the most stressful 24 hours of our lives, and the next week will be spent at home, caring for our precious Evy. We're also lucky to have such amazing family and friends that will be here to help and spend time with Paityn!

The day that we will be most excited for is 1/25/12... Activation Day! Evy will be implanted with the internal device on 1/11/12, but will not wear her external processor until 2 weeks post-op. She will need time for swelling to go down and for her sutures to heal. When she gets activated, she will have access to the sounds around her for the very first time! Although we anticipate this being a happy day for us, the audiologists said to expect any range of reactions from Evy. Being activated is exciting, but can also be very frightening to a child who has never heard these noises and voices before. She will probably be a little overwhelmed and scared, but it's normal. That's when the intense therapy comes in! Her teachers and audiologists will constantly be working with her and programming the implants to her specific needs. Nothing will happen over night and this process will take lots of hard work from all of us, especially Evy, but I just know that she will enjoy the hearing world so much that she will adjust quickly to her new way of life! We'll have a little chatterbox before we know it; especially with her big sister around to show her how it's done ;)

We certainly have a lot on our minds, but for now we are going to enjoy the holidays with our family and focus on having a great Christmas! Hope you all do the same!

Wednesday, December 14, 2011


Hello Everyone! Thanks so much for checking out Evynn's blog! I wish that I had started this a little sooner, but we have been so super busy. I'll start with getting everyone all caught up, from the begining! Evy didnt pass her newborn hearing screen at the hospital when she was just 2 days old. The nurses said that this was common and that we shouldn't worry too much. Fluid from birth can still be in the ears, causing some infants to fail the screening and we were told to make a follow up appointment for another test. 2 weeks later, on 11/17/2010 we brought her back to the hospital for her 2nd test. They said that she had not completely passed the test, but again, there could still be some fluid in her ears. We were told to simply watch her and see an audiologist if we felt like she was developmentally behind. We felt relieved that there was nothing permanently wrong and the next few months were pretty carefree. Around 6 months old we started having doubts, but it was difficult to determine whether or not we thought Evy heard us, or if she felt vibrations and was responding to that. Shortly after, we were referred to an ear/nose/throat specialist for Evy's frequent ear infections and our worries regarding her hearing. The ENT said that Evy had some fluid in her ears and on 8/18/2011 she had tubes put it in. The hopes with the tubes was to get the fluid out and help Evy hear better. After a few weeks with the tubes in we went back the the ENT because we did not feel that Evy's hearing was improving. We weren't really getting answers, so we contacted Cardinal Glennon Childrens Medical Center and got an appointment with an audiologist. After hearing tests in the booth, the audiologist felt there was enough of a suspicion of hearing loss to indicate an ABR be done. An ABR is an automated brainstem response test.  On 9/19/2011 we went back to Cardinal Glennon where Evy was sedated for the ABR test. The doctors put sounds at different decibel levels in her ears and looked for her brain's response. The results told us that Evy was profoundly deaf in both ears. Kyle and I were absolutely shocked. We cried for a few days straight, but we leaned on each other and had amazing support from family and friends. We went to work right away to find Evy the best care possible. We chose the Moog Center for Deaf Education as Evy's school and we couldn't be happier with our decision. 10/12/2011 was a special day for Evy- she recieved her hearing aids! We were so very excited for her, but she didn't like them too much. She has good and bad days with them. Hearing aids were not benefiting Evy enough for her to learn proper speech and language, so we started looking into getting her cochlear implants. After more audiology appointments and counseling with her deaf education teachers, we all decided this was Evy's best shot!. Paperwork was submitted to insurance for approval on Wednesday 12/7/2011. We were told to expect about a month before getting approval, but just 7 days later, they called us with the great news that insurance had approved the surgery!!! We immediately set a date! Evy is scheduled for bilateral cochlear implant surgery on 1/11/2012. We are so excited for her new chapter in life and so very proud of all of her accomplishments so far!