Wednesday, October 31
Tuesday, October 30
I have been looking forward to Halloween for some time. Really since last year. You see, Halloween Day last year was the low point in our journey to "turn on" Drew's ears. You might think that D Day would be the low point, but really the days immediately following the diagnosis were worse. They were filled with so many unanswered questions. The uncertainly surrounding Drew's future made for some very long and difficult days. October 26th was awful, but the not knowing was even worse. How profound was Drew's hearing loss? What could be done? Would he go to school with his hearing peers? The list of questions went on and on and the uncertainty was unbearable.
Why was Halloween day, in particular, so hard? First, I found out that the audiologist that did Drew's test knew he had a profound hearing loss and did not tell me. After researching hearing loss, intervention and amplification over the weekend following Drew's test, I decided to call the audiologist. I had several questions for her on the testing she had run, results and amplification. I asked her, "Do you think Drew will benefit from hearing aids?" Her answer, "No, he will need a cochlear implant." How did she know he would need a cochlear implant if she didn't know the level of his loss? I requested the paperwork from his tests (she had not provided them to me on the 26th) and on the top of the paper she had written, "V Wave absent at 90db bilaterally". She knew he was deaf and did not tell me.
After finding out that a cochlear implant was likely in Drew's future, I decided to contact the insurance company to get information about our insurance plan. The representative from our insurance company told me that we had no (that's right, zero) coverage for hearing related issues. This included all diagnostic testing, hearing aids, cochlear implants and therapy for hearing related issues. When we learned of Drew's hearing loss I did not think that things could get any worse. But here I was learning that my insurance company would not cover the intervention that Drew needed. How would we pay for all of this ourselves? Luckily follow up calling in the days that followed revealed that we did in fact have coverage, so this fear was quickly dismissed.
It was cold and misting rain on Halloween day last year, which only added to my depression. I barely brought myself to cook dinner and once that was done I couldn't bring myself to do anything else. That included taking the kids trick-or-treating. Halloween was the one time throughout everything that I did not do what I should have for my children. I know that they will not remember the fact that they did no go trick-or-treating when they were so young, but I will remember.
I think that I have done a really good job handling all of the ups and downs surrounding Drew's hearing loss. From day one I jumped into finding out as much as I possibly could about hearing loss and intervention. I accepted the diagnosis and realized that Drew is going to have a great life. But there are days that were difficult and the anniversary of those days bring on a flood of new emotions. I am so happy with where we are at in this journey, but I remember what it was like at this time last year. It's a weird feeling to be so happy with where you are but remember how badly you felt just a year ago. At that time I could not have imagined how far we would come in just one year. I am confident that with time these memories will fall farther into the abyss of 'things not worth remembering' and the new ones of Drew hearing will be in the forefront of our minds.
Sunday, October 28
It's been a year? In some ways it seems like yesterday, in others it feels like forever. We have known of Drew's hearing loss for one year. My how things have changed, and yet somehow feel the same.
I would like to take a moment and thank those that have helped us in so many ways throughout this year. We are so blessed to have such wonderful family and friends that care so genuinely for our family. I can not mention everyone or every little act of kindness, so I picked a few things that stand out in my mind:
- My Mom, Dad, Sister & Brother: Thank you. Thank you for giving me the pep talk I needed in the crucial moments after Drew was diagnosed. I don't know that I would ever stopped crying or gotten out of bed without your words of encouragement and support. Thank you for taking care of Drew's Sister with a moments notice so that I could take the first available appointment to see a doctor, audiologist or therapist. And thank you for loving all of us unconditionally. You mean more to us than you will ever know.
- My MIL: You have tracked down more people than I probably know researching cochlear implants and oral deaf education. I know that you have spent many sleepless nights gathering as much information as you can for Drew. You have also talked with powers that be at Children's trying to get Drew in sooner than what they tell me over the phone. Drew is known all over the city because of how much you talk about him - only because you love him so much.
- Drew's Great Aunt & Uncle: Thank you for calling upon a friend to get Drew in for his diagnostic ABR months sooner than we were originally scheduled. One of the hardest parts of this journey was the not knowing, and you shorted that time frame immensely. We can not imagine how different this journey would have been had we not traveled to St. Louis and seen the Moog School for Deaf Education. Those children gave us the hope we needed to carry on and to make the decisions needed for Drew to get him to this day. We are forever grateful.
- My Friends: For picking up the phone the day you found out about Drew's hearing loss. I know that you sat at your computer, reading the email I sent with the diagnosis, for some time trying to think of the perfect words, but you realized that there were no words to say. I needed your phone calls more than you know. Thank you for not being afraid to talk about Drew's deafness with me. Thank you for calling weekly to see how the little guy is doing (or are you calling to see how I am holding up?). There have been so many unforeseen things that have come from Drew's hearing loss, and one is how this experience has deepened our friendship. I am blessed to be able to call you friend.
Drew is an amazing little boy and I feel so lucky that I am the one he will call "Mommy." Through this year we have all laughed and cried together. We have celebrated milestones that we at one time thought might not be possible. The love I have for him and his sister is indescribable. Drew has an amazing journey ahead of him and I know that he looks forward to sharing it with you.
Love, Drew's Mom
Thursday, October 25
It was a rainy fall day, with a fierce wind that put a chill in the air. Beautiful golden leaves were falling off the trees and blowing all around, covering our lawn and street. It was the kind of fall day that reminds you summer is over and another winter is headed your way. Drew's Sister spent the day at preschool and with Grandma because of Drew's doctor appointment. The appointment with the ENT was scheduled for 2:00 pm.
I decided that it was a great day to go shopping! I can remember how happy I felt walking through the mall with Drew that day. I was in no way worried about the appointment later in the day. Drew's Dad and I were confidant that there was still fluid in Drew's ears. I enjoyed picking out a birthday present for my Sister and eating a nice lunch at Panera Bread.
After leaving the mall, I still had time before Drew's appointment, so I decided to stop at the grocery store to pick something up for dinner. Drew's Dad and I love crock pot spaghetti, and with the chill in the air, it felt like a great day to have our first "fall" meal. Drew fell asleep in the car on the way home from the grocery store. When I got home, I tip toed around the kitchen making dinner while he slept in his car seat sitting on the kitchen floor. I knew that if he were to wake he would want to eat, and I did not have time to make dinner, feed him and get to the doctor on time. So I was quiet. I lifted the stock pot out of the cabinet so quietly. I gently laid the spaghetti in the pot and I went to the bathroom to get water. There were points that I would make a little too much noise and I would hold my breath and turn to see if it woke Drew up. He never startled.
The ENT's office was cold and sparse, just as before. Something was different this time, however. My behavior. I was not nervous nor was I shaking. I notified the receptionist that we had arrived and then took a seat in the corner of the waiting room. I gently flipped through a magazine while I waited for Drew's name to be called. I only sat for a few moments before they called us back.
I sat in the same office as before. This time I went ahead and removed Drew from his car seat and held him in my arms. He was still sleeping. He was so warm and cozy in my arms, and I kissed his forehead. As the doctor walked in, wearing the same funny thing on his head, I told him, "I'm ready for you!" He was just as I had remembered, middle aged and unfriendly. He looked in Drew's left ear first and proclaimed, "The fluid is clear." My eyes got big and my heart sunk. I tried to maintain my composure when inside butterflies were jumping in my stomach. He had checked the right ear in the meantime. Same answer, "The fluid is clear in that ear, too."
I sat for a moment and then the doctor asked, "So, do you think he can hear?"
"I don't know," I responded, in a soft voice. "I was certain that there was still fluid in his ear because I haven't seen any changes in his behavior." It was at that time that the doctor picked up a metal pan and dropped it to the floor. The clanging and banging of the pan hitting the floor was so loud that people in the waiting room probably startled. Drew laid peacefully asleep in my arms. The doctor shrugged his shoulders and said, "I'll be back in a minute."
He returned with an audiologist. She was young and friendly. She escorted me to a new room where she ran an OAE test on Drew. His results were "refer" at all five frequencies in both ears. My heart sank further, as if that was possible, and the butterflies danced harder in my stomach. "Let's do a different test," she said. "The OAE is just a screening test and can produce false results." She moved Drew and I to another room.
From there much of the rest of the testing is a blur. I sat in a rocking chair, holding my baby while all sorts of wires were placed on his head. The audiologist switched the equipment from the left ear to the right and then back again and again. She would leave the room and return with another audiologist. Then she would leave and return with a doctor. I watched the hand on the clock on the wall tick, tick, ticking. One hour went by. Then another. I sat in the rocking chair, holding Drew and I cried. I would ask, "How are things going?" And I would get the same answer each time, "Let's wait until I'm finished." I continued to rock him and closed my eyes. The tears streamed down my cheeks.
Finally the audiologist removed all of the wires from Drew's head and ears. She gathered my belongings and took Drew and I back to the office we started in. She told me that she was going to review the results with the doctor and he would be in shortly. She left the room, leaving the door partly ajar. I sat in the office just looking at Drew. He was so perfect; how could anything be wrong with him? About that time the nurse that called Drew's name in the waiting room walked by. I think she was shocked to see me still in the office, nearly three hours later. She tapped on the door, pushing it slightly open. "Everything, O.K.?" she questioned.
I couldn't hold them back. The tears came streaming down my face and I began to sob. I have never felt so scared, helpless and alone in my life. I had no idea what the results of these tests would mean for Drew or for my family. I had no idea what could be done for a child with hearing loss. The gravity of the day was sinking in and it was too much for me to handle. I cried and cried.
Finally the doctor came in the room. He seemed even more unfriendly, if that was possible, this time. "Well," he paused, "that's not what we wanted."
Excuse me? That's not what we wanted? That's all you have to say to me? Your audiologist has been testing my son's hearing for almost three hours and all you can say is, "That's not what we wanted?" What is not what we wanted? Tell me what is wrong with my son!
The ENT continued, "Well, you'll need to have more testing done." He would pause for what seemed like an eternity between each sentence to make the most awful hissing sound. "Your son has hearing loss." Insert awful hissing sound, "Do you have any questions?"
The situation was too intense and I felt the walls of his office closing in on me. I was alone, scared and too upset to ask any intelligent questions. I continued to cry, which I could tell was making him very uncomfortable. Finally I mustered up, "What can be done?" He looked at me for a moment and said, "Well, we don't know until further testing is completed." At that point I was done with him and he left the room. I started gathering my things while trying to get a handle on my emotions. I heard a faint tapping at the door. It was the audiologist, checking to see if I had any questions for her. Again, I was at a loss. I can only remember that she told me that many children with hearing loss develop speech equivalent to their hearing peers with things like hearing aids and cochlear implants.
And that is how I left. Clinging to the hope that Drew would be one of the "many".
Monday, October 22
Drew's Dad and I were both feeling pretty good one year ago. We had a reason for Drew failing his newborn hearing screening. It was our glimmer of hope and we truly felt that everything was going to be just fine. We were holding on tightly with both hands firmly grasped on the thought that the fluid would clear and Drew would pass his hearing test. I can even remember Drew's Dad saying one night, as we went to bed, "I hope that my lack of worry isn't setting it up for them (the ENT and audiologist) to tell us he can't hear."
Drew's Dad and I knew that the fluid was still there. We did not feel as though the fluid was clearing because we had not seen any change in Drew's behavior indicating that he could hear. So we decided that I would take Drew to the follow-up ENT appointment on October 26th. Alone.
All the ENT was going to say was, "Come back in one month and we'll see if the fluid has cleared," right?
Saturday, October 20
Tuesday, October 16
I can remember that Drew's Dad was not overly concerned about the failed results. The audiologist had given him some encouraging words like, "many babies who do not pass their screening have normal hearing." I did not find comfort in those words. I was worried from the moment Drew's Dad told me he did not pass. I had been showering when the audiologist came in to explain Drew's test results so I never had the opportunity to ask any questions. All we were given was a list of places that do diagnostic ABR's for infants and told to schedule a follow up test.
In my heart I knew he couldn't hear. Why hadn't Drew calmed to the voice of his Daddy right after birth? He was crying at the top of his lungs with his Daddy talking to him and he continued to cry. When my daughter was born, Daddy's voice instantly stopped the crying and she turned to look in his eyes for the first time. Why hadn't the squeaky door in my hospital room woken him as nurses and family members came and went? He never startled. Never woke to a loud sound. I knew something was wrong.
We took Drew home on the same beautiful September day as his hearing screening. I can remember my Mom bringing Drew's Sister home (she had stayed with Gamma and Pa Pa while we were in the hospital). I told my Mom that Drew had not passed his hearing screening and she was just as confused and worried as I was. I pulled out the audiologist report from the hospital. It was so confusing to me and I had no idea how to read it. I began calling the list of places we were provided to do the follow up testing. Many of the places on the list did not do diagnostic ABR's on infants, and those that did were booked until December. I called places for over an hour. When they would tell me they could not get Drew in until December I would cry. I would try to mask my sadness and fears while finishing the conversation, "Well, thank you for checking, but I'm not going to wait until December. I'll try somewhere else." Finally, the receptionist at Columbus Speech and Hearing took pity on me when she could hear me crying through the phone and scheduled him for early November.
Drew had jaundice as a newborn, so we spent many days at the pediatricians office getting his belirubin tested. At his first appointment, two days after we left the hospital, I asked his doctor about the failed hearing screening. His responses left me with little hope: "Well, I've never had a baby fail his newborn screening." Never, seriously? You've been in practice for over 30 years and have never had an infant fail the test? Then he continues, "I don't know exactly how to read these tests, but even if he is deaf, there are these things called cochlear implants so he won't get hit by a car if he is playing in the street." I was standing at the time he was telling me this, but I had to sit. The gravity of the situation was too overwhelming and I sobbed. The kind of sobbing that is uncontrollable. There I sat in his office, completely inconsolable. It was awful. He nor Drew's Dad knew what to do. Once I pulled it together I was able to say, "Well, can you at least call around and try to get a follow up test sooner than the first week of November?" He obliged, and called later that day to tell me Drew would be seen by an ENT on October 4th.
I cried a lot after that. As I would nurse both of my babies I would sing and talk to them. Despite all of the visitors and chaos of having a new baby, there were always those moments of breastfeeding that were just me and my little baby. I loved those times with both of my babies. But there was always a fear when feeding Drew: What if he could not hear me singing? What if he couldn't hear me telling him how much I loved him? I would cry. Every time I would feed him I would cry. It actually became a bit comical to my Mom and Sister who spent many of the first days of Drew's life helping me at home. They would bring the Kleenex as I would start to feed Drew, knowing the tears would follow.
I can remember one night in particular, about four days after Drew came home from the hospital. Drew was asleep in his pack in play in the corner of our living room, my Mom was cooking dinner and Drew's Dad had just gotten home from work. Drew's sister was running around the living room playing with her toys, in particular her popper. She was going every where with that thing and making a ton of noise. I kept telling her not to pop it by Drew, but she did anyway. He never startled, never woke. I sat on the couch watching her play and cried.
I actually get teary eyed just thinking about the things I went through this time last year. It was such an emotionally draining and physically exhausting time. I feel cheated because I never got time to have any worry free moments with Drew. I spent a lot of my time on the phone scheduling appointments or on the Internet researching hearing screening and interventions for children with hearing loss instead of resting and spending time with my new little boy. I'm sure that many parents who have been through this journey like me have many of the same feelings.
I could not sleep at all on October 3rd. I was worried about what the coming day would bring and if I would be strong enough to hear what the ENT had to say. Drew's appointment was not until late in the day so I had to sit around all day waiting for it to come. My Mom drove Drew and I to the appointment. She was insistent on doing so, mainly because she and my Dad wanted to make sure that I wasn't alone if Drew was diagnosed with hearing loss.
The ENT's office was cold and sparse. I was uncomfortable from the moment we walked through the doors. My stomach was uneasy and I was having a hard time keeping myself from nervously shaking. The ENT walked in the room. He was middle aged, unfriendly and had something funny on his head. He asked a few questions and then looked in Drew's ears. It took all of a couple of seconds to find fluid in both of Drew's ears. I looked at him sternly and said, "Do you think that is why he failed his hearing screening?" The ENT said, "Yes. I will see him back in three weeks. Hopefully the fluid will have cleared and we will retest him then."
Drew can hear, I kept telling myself. I was in a way relived, but still uneasy. I kept telling myself that everything would be O.K. but deep down I still thought that something was wrong. I scheduled a follow up appointment for October 26th.
Friday, October 12
Drew had his first equipment problem this week. The shoe cable on his body worn processor went bad on Monday evening. I called Hear Always to order a replacement. The replacement cable arrive on Thursday (the Columbus Day holiday held mail up). If Drew had just one cochlear implant he would not have been able to hear for three days. If I stop to think for a moment, can I really imagine what it would be like to not hear for three whole days? Can you?
In Drew's case, being so young, it would not have affected him all that much, but what about older children? How would they function in their classroom at school, talk with their friends or hear traffic going down the street while playing basketball at home? I think that three days would seem like and eternity and would be very isolating. I am so happy that Drew has bilateral implants because he was able to hear the whole time we were waiting on replacement cables. He even learned what "no" means during that time (not that he listens to me!).
Just another thing - as if there wasn't enough already - for parents to consider.
Wednesday, October 10
Often CI children wear their body worn processors in a pocket(s) attached to the child's clothing. So, what do you do when your CI child spills a cup of milk all down his shirt less than 20 minutes before bed-time?
a. Leave him in the wet shirt so he can keep his ears on.
b. Remove his ears and wet shirt and call it a day.
The diaper works too!
I have to say that we entertained the diaper idea for a few moments but I actually managed to keep both ears on while removing the wet shirt and putting on a new shirt. Man I'm getting good with his equipment!
Tuesday, October 9
If you have any questions about the meeting please leave a comment.
Saturday, October 6
- Drew has been concentrating hard on his motor skills and has made tremendous progress in the past week. He can climb the stairs like a champ. He is all business and can get to the top of the stairs in about two seconds flat. He is also starting to walk with his walking toy and does well putting one foot in front of the other. I can not help but notice that he struggles with his balance. I feel that he has some underlying vestibular issues as a result of his hearing loss that are affecting him. I am concerned that he is not yet standing on his own, but I am thrilled with how hard he is working on his motor skills. I spoke to the pediatrician about this at Drew's one year appointment and he did not seem overly concerned about the fact that Drew can not stand on his own. He said that he will reevaluate him at his 15 months appointment and go from there.
- Another area of concern has been Drew's ability to chew solid foods. Whenever he put solids in his mouth he would chew for a little bit and then when the food would get to the back of his throat he would gag and act like he was choking to death. Seriously, it has been very scary at times. In the last week he has begun to really chew up food and swallow it without choking! In fact the last four nights he has eaten some solid food and not had one choking moment. It seems like such a minor thing but it makes life so much easier! When he can chew on a biter biscuit at a restaurant for 30 minutes it makes our dinner much nicer. I think now we will move at a fast pace with him transitioning from jarred baby food to solid table food.
- Drew's babbling is expanding daily. He has added the /s/ sound to his repertoire. He also will try to "moo" like a cow when we work with him on animal sounds. We are working on body parts right now, using baby dolls, Mr. Potato head and ourselves as models of the spacialilty of various body parts, like eyes, ears, mouth, etc. Drew is very interested in mouths and will always touch mine when I am talking to him. I'll be interested to see if this is the first body part he identifies on his own.
- Drew understands the words "up" and "eat". It is very exciting to know that he is actually able to hear and comprehend different concepts. If I ask him, "Drew, do you want up?" he will put his arms in the air and wait to be picked up. I love that Drew has made me learn to appreciate little things like this. I am now practicing little things with him like, "How big is Drew?" and then throwing his arms in the air while saying, "So Big!" He has so much fun with that one.
- Giving kisses is Drew's favorite pass time now and Drew's Dad and I are loving it! I got three kisses (and by kiss I mean he leans in with an open mouth and slobbers all over you!) when he woke from his afternoon nap and Drew's Dad got eight kisses before putting him to bed tonight. Drew does not make the kissing noise while giving the kisses, but he will make it in response to our kissing him.
- Drew received a lot of "learning to listen" toys for his birthday and we are loving all of them! He has a house, barn, trucks, zoo and lots of new books. We use them to practice things like open and close doors, animal sounds, and one step directions like "Put the dog in the car". Drew is very active now and really likes doing these activities (except when he is supposed to do them at therapy! He clams up at all of his therapy appointments.)
Drew continues to amaze us daily with the progress he is making. October 26th will mark the one year anniversary of finding out that Drew is deaf. This month has been hard for me as I reflect back on my emotions during this time last year. I will share more on that later. It's time to watch the Buckeyes vs. the Boilermakers. Go Bucks!
Thursday, October 4
- Let Them Hear Foundation - Research Supporting Bilateral Cochlear Implantation
- Let Them Hear Foundation - Research Supporting Bilateral Cochlear Implants in Children Under 12 Months of Age
- Cochlear - Rationale for Bilateral Cochlear Implantation in Children and Adults
- Cochlear - Should Patients Receive Two Cochlear Implants?
- Advanced Bionics - Bilateral Cochlear Implantation: Selected Bibliography of Peer-Reviewed Publications
- Advanced Bionics - Hearing With Two Ears: Technical Advances for Bilateral Cochlear Implantation
- American Otological Society - Cochlear Implantation in Both Ears May Improve Speech Perception
- MED-EL - Publications on Bilateral Cochlear Implantation With The MED-EL COMBI 40/40+ Implants
- Otolaryngology - Head & Neck Surgery - Central Auditory Development in Children With Bilateral Cochlear Implants
- SBU Alert - Bilateral Cochlear Implantation (CI) in Children
- Healthy Hearing.com - Interview With Tina Chldress M.A., CCC-A, Audiologist, Bilateral Cochlear Implant User
- Vidyya - Cochlear Implants in Both Ears Help Deaf Localize Sound, Hear Speech in Noisy Backgrounds
- BBC - Doctors Hail Double Ear Implants
- HearingLossWeb.com - Bilateral Cochlear Implantation: Potential Benefits and Risks
Tuesday, October 2
A nine month old little girl in New York was scheduled for her cochlear implant surgery, but was later denied coverage by Anthem Blue Cross Blue Shield because she was under one year old. Their doctor submitted a letter explaining the need, and they tried to get help from the Let Them Hear Foundation, but nothing had worked. The family had their final appeal with the insurance company later that day and a family friend posted a plea for help on CI Circle:
We saw her cry for help and emailed her, explaining that Drew had successful bilateral cochlear implant surgery at just under nine months while covered by Anthem. We sent to her a copy of Drew's approval of coverage letter and "Explanation of Benefits" from Anthem in the hopes that it would help the little girl in New York. We later got this response:
I've heard there are studies supporting implantation under 12 months. Does anyone happen to know those studies offhand. I was hoping to put a few things together for them to take with them to their appeal this afternoon.
I'm happy to report that my husband's co-worker and his wife won their appeal with Anthem, so their daughter will be able to have her surgery as planned on Friday. Thanks for all your help and advice.It feels great that Drew was able to help that girl, even though we don't know her or her family. If you or someone you know is denied insurance coverage for cochlear implants, don't give up! Please let us know if we (and Drew) can help you.
...I think Drew's EOB really made the difference. Thank you!