2019 Family Photo

2014 Family Pictures

Safe to say we have not been the best bloggers recently. But when you have pictures as cute as these to share, it is hard not to want to post them. We love these kids.

Life is Busy! It has been over 6 months since our last post. And while this post is brief, it is hopefully a sign that we can find a few minutes here and there to update you on everything happening in the Ensign Household. Stay tuned.

Activation Day!

We will probably always remember November 1st as Kelsey's hearing birthday. While the following post shows her reaction to sound for the first time, we continue to remind ourselves that while this is a great step, there is still a long road to travel before we can truly know whether or not this process will be of benefit to Kelsey.

 Kelsey enjoyed this toy in the lobby prior to our appointment.

We entered into our room where they had set up toys, a high chair, books, and anything else they could think of to keep Kelsey entertained while they programmed her processors.

This shot shows the top of her processor hiding underneath the brown headband, and the transmitter attached to her head by magnet.

This picture gives a better idea what her processors and transmitters look like.

 

This first video shows Kelsey's response as they begin testing her reaction by sending a basic tone. It was nice to see her turn her head the first time.

Kelsey was so passive in her responses that eventually her microphone was turned on, and it finally got loud enough for her to have a response. I guess when you hear your name for the first time, it can be a little frightening.

We kept testing different frequencies and volume levels. The video above shows another scared reaction to hearing sounds for the first time. Overall it was a positive experience that verified everything appears to be functioning as it should. We were given instructions to remind family and friends that while she is beginning to hear sound, it does not sound the same way we hear sounds, but rather something like Donald Duck under water.



Kelsey climbed on top of the waiting room table and waived to everyone passing by.

It has now been 10 days since Kelsey's processors were turned on. We find it a challenge to keep them on her as she enjoys taking them off and bringing them to us. There really isn't much to report in terms of her reactions to sound because she really only has a hearing age of 65 hours. When it comes to sound...she is a newborn, and most newborns don't react to sound for some time. We do enjoy the times when she will leave her processors on and "appear" to pay closer attention to things.

We return to the audiologist two or three times a month for the next few months so they can adjust her programming and amp up the volume. This process is called "Mapping." It is essential that we make these visits as this mapping process will make it possible for Kelsey's processors to be programmed specifically for her and her needs. We will keep you all posted as we continue to learn more. As always, thank you for the love and support.

Cochlear Implant Surgery

WARNING: THIS IS A LONG POST WITH LOTS OF PICTURES

Thank you to all of our family and friends who have shown such great love and support as we have proceeded with Kelsey's surgery. We have received several questions that have made us realize, we have probably not done a very good job explaining what a cochlear implant is, and what it can do for Kelsey. This post will first explain what a Cochlear Implant is and what it is capable of, and then will show some pictures of Kelsey's surgery.



What is a Cochlear Implant?

A cochlear implant is a medical device that is designed to provide a sense of hearing to individuals with profound hearing loss. A cochlear implant stimulates the auditory nerve with a tiny electrode array, resulting in a relatively crude approximation to normal hearing. The most advanced electrode arrays today use only 22 electrodes, whereas the healthy human cochlea has thousands of hair cell receptors for transmitting information about sounds. A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds, a cochlear implant bypasses the damaged portions of the ear and directly stimulates the auditory nerve. The sense of hearing that the cochlear implant provides is fundamentally different from that of normal hearing. 



This diagram provides a basic overview of how the device works.



First, a surgery is performed to implant a receiver, magnet, and electrodes. For Kelsey, an incision was made above each ear, down behind each ear, and finally out towards the back of her head. The skin was folded back, and the muscle parted until the skull was visible. A portion of the skull had to be carved away to allow for a small pocket where the receiver, and magnet could be embedded. Then a small hole was drilled through the bone to allow a wire to bypass each of her external ear canals and eardrums. The wires, are then looped into the cochlea ending at the auditory nerve. The wires contain the electrodes that will help to stimulate the auditory nerve. The following picture shows the Freedom Device that Kelsey had implanted behind each ear. 

Freedom Device
The circle portion is silicon with a small circle magnet, while the large square is the receiver. The short wire is for ground, while the long wire with the loop is inserted into the cochlea and ends at the auditory nerve. The entire Freedom Device is implanted into the head, and then surgery is complete.

Kelsey is home now and resting comfortably. Her swelling is going down and she is returning to her normal "busy" self. The next step is to wait for her incisions to heal before proceeding to the external portions of the Cochlear Implant. We have an appointment on November 1st to have the external device activated. Because Kelsey has never heard any sound, we expect November 1st to be a bit of a scary day. The following picture shows the Nucleus 5 Device that Kelsey will wear.

The Nucleus 5
The main piece will fit behind her ear with the bottom portion containing the battery, and the upper portion containing her speech processor. Once activated the speech processor will collect sound and convert it into a digital signal. It will send that signal along the short wire up to the transmitter (Circle Piece). The center of the transmitter contains a magnet that will attach itself to the magnet previously implanted as part of the Freedom Device. The internal receiver will collect the digital sound, send it along the internal wire and ultimately end up stimulating the auditory nerve.

We plan to video our November 1st Appointment to document when Kelsey hears her first sounds. Although Kelsey has over 60 signs, when it comes to sound it will be as if she is a newborn again. We may not know for years the level of success this Implant may prove to her. It is because of this uncertainty that we plan to always sign first with her, and have American Sign Language always be her first language.  

Kelsey's Surgery

On Thursday we visited our Surgeon's office for Kelsey's Pre-Op appointment. Mostly they just checked her ears, answered a few of our questions, and marked her ears.

 She got a little bored, so I had to improvise a balloon.

She did not enjoy having her ears looked at.

We finished our Pre-Op appointment earlier than we had planned so we made a brief trip to Hogle Zoo to let Kelsey look at the animals. She loves animals.

You can see where her ear has been marked. "Y" for "Yes, you can implant this ear."

On Friday Morning we arrived at Primary Children's Hospital at 6:45 a.m. She was measured, weighed and had her vitals taken. We also changed her into her clothes.

After she had been changed we moved to meet our Anesthesiologist. He was very kind and had a great idea to ease the separation anxiety surely to come when we could no longer be with her in the operating room. He brought over a wagon and placed some toys inside. Alisa pulled the wagon until we reached the doors where we had to say goodbye.



This scene was the hardest part of the whole day.

Surgery took nearly 4 hours....it felt longer than this. After the surgery was completed Kelsey's surgeon Dr. Shelton came and found us in the waiting room to tell us that the surgery went according to plan with no complications. We were allowed to join her after she began to wake up.

We feel truly blessed and believe that so many of the prayers offered in Kelsey's behalf were answered as she was able to sleep for the far majority of the time we spent in the hospital. Thank you for all the prayers.



Maybe "Princess Leah" for Halloween?

Early Saturday morning they came in to remove the large bandages. Amazingly they did not have to use stitches, but instead use something called Steri-Strips to basically tape the wound together. This is supposed to minimize the scar.

While waiting for the "all clear" to go home, Kelsey began to act like her old self and was ready to get out of our small room. Thankfully we found the Wagons again and she took a ride around the halls.

Kelsey is doing great. The last few pictures were taken about 48 hours after surgery. The strips will stay on for about 7 days, and after that we can finally give her a bath.

We will continue to update this family blog with Kelsey's progress, beginning next with her November 1st activation appointment. Thank you for all the love and support. 

Our Dear Kelsey,

At the time we write this letter, you are just barely one year old. You are adorable, full of personality, and are beginning to take your first steps. There is a large “life-step” in front of you, that as your parents, it is our responsibility to make a decision on your behalf. From the time that you were identified with a profound hearing loss, we have been faced with an important decision that may impact the rest of your life. Nothing is more important to us as parents, than ensuring we provide our children with every opportunity to succeed. As such, we have decided that it is in your best interest to be bilaterally implanted with a Cochlear Implant. At the time of this letter, your surgery is only two days away. We anticipate that when you are older, the time will come when you will ask us, “Why did you choose to give me cochlear implants?”


Although we will certainly strive to answer that question at the time of your asking, we wanted you to have this letter where we could explain to you the thoughts and feelings we had at the time we came to this conclusion. Time and experiences will ultimately continue to shape our overall assessment of this decision, so we hope that this letter will help you understand our hopes, excitement, and concerns that have surrounded the choice before us.

Kelsey, you are a beautiful girl with such a vibrant and curious personality. In truth, we see so many traits and characteristics in you that remind us of your older siblings. You are happy, funny, spontaneous, and strong. Throughout our entire decision making process, we kept saying, “Whatever we choose, our Kelsey will succeed.” We want you to know that we truly believe that.

The decision to give you a Cochlear Implant was not a simple one. We had many strong feelings FOR and AGAINST proceeding with the surgery. We feel it is only fair to you to share some of the thoughts and feelings we have had.

We have a testimony that our family was prepared for you to join us long before you were born. Your mother gained a college education focused in Deaf Studies and ASL, and is privileged to work each day with Deaf Students in Utah’s Education system. Your father, although not nearly as fluent as your mother, took Sign Language classes in High School and in College. Our desires to learn Sign Language long before we were even married; we believe, was part of the preparation process to have you join our family. We have signed with you ever since you were identified as Deaf. Your older siblings are receiving in-home instruction not only from us, but also an instructor who visits several times a month. This environment, coupled with your intellect and personality have allowed you to have a communicating vocabulary of nearly 60 signs. Your communication success is well advanced of other individuals your age. For this reason we felt implants could be unnecessary. Emotionally we struggled with the idea of an implant, as we never wanted you to grow up believing your parents thought you were “broken” and needed to be “fixed.” Please believe us as we tell you that you are perfect just the way you are. We know that there may be some individuals you interact with that may chose to be cruel or poke fun, we apologize for any social stress our decision to implant you may cause. We believe you to be strong enough to withstand any teasing or unkindness that may come your way.

Although we had hesitations with the implant process, we also could think of many reasons to proceed with the surgery. You are a valuable part of a “loud” family. Your older siblings love to sing, yell, laugh, and in general make insane amounts of noise. We want you to be able to fully participate in the commotion. Although music may still pose a challenge to you, there is much beauty in music that we wish you to have the opportunity to interact with. We live in a hearing world, and implants may also foster your independence. We wanted you to have every opportunity to succeed in whatever your interests may take you. While interpreting sounds may never be an effortless process, we also felt that an implant would provide you with a tool that may allow you to follow whatever dreams you have.

Ultimately Kelsey, our decision to implant came down to a few basic feelings. First, you are Deaf. You will always be Deaf, and our decision to implant you is in support of that Deafness and not in our efforts to change who you are. You are Deaf, and we love that about you. Being Deaf will help define you as an individual and will grant you access to a world of culture that your parents may never fully understand or appreciate. We want you to be a part of this culture and enjoy the blessings this culture provides.

Second, our decision to implant you is our effort to provide you with a TOOL. It will be up to you to determine how well this tool works and in what capacity you WANT this tool to work for you. We are here to support you and the decisions you make. This means, as you reach the age where you can make decisions for yourself, we will never force you to use this tool. As you grow, if a cochlear implant impedes in your ability to be who you want to be, then we support your decision to remove the device and communicate solely through American Sign Language. Our family will further our efforts and education so we can always communicate with you in this way. If; however, you wish to continue using your cochlear implants, then we will also make every effort to ensure you are equipped with the technology you need to succeed. We felt strongly that choosing to implant you at a young age, would give you the best chance to succeed, but also would “give you the choice” later in life to decide whether or not you wanted sound in your life. We do, and will support the decisions you make.

We love you. We are so happy that you are a part of this family. Your smile brings so much joy into our lives. We hope this letter will help you understand why we are making the choice we have made. We hope you will always feel comfortable in asking us any questions. We are here for you.

Love,

Mom and Dad