Emma Updates (November 2003 Archive)

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November 2003 Archived Emma Updates

11/25/2003-Got things rolling today for an OBJECTIVE second opinion on Emma's ABR. Acceptance seems to be settling in although I will not give up trying to prove the doctors wrong. I know it is unlikely that I will but if there is the smallest fraction of hope then that is all I need. It is interesting how the grieving process is the same no matter the tragedy. Denial, anger, depression, fear, etc. We have experienced them all. Now I think we are accepting the apparent facts. I researched cochlear implants today and from what I read I like what I hear (that is if Emma qualifies as a candidate). Hear is a link to Dr. Robert Peters' website. He is the name that keeps coming up and I spoke with a member of his staff today. We are going to begin that process of getting Emma qualified as a candidate just in case we have to go that route there will be no delay. This link is to a link on cochlear implant testimonials from his patients. I like what I read. But then the skeptic in me says, what about the failures? What about those that it did not work on?

Emma got a dancing "Simba" stuffed animal tonight. She pushes the buttons in the ears that make it sing and dance. She dances along with it and her brother. She also holds it to her ear as if she can hear something. Another good sign but probably only feeling the vibrations. I have never seen her love a toy more. She will not allow her brother to see it. She played her normal "peek-a-boo" game at dinner with us. She batted her big brown eyes at us just melting me. It is these things that we can still cherish and that make us happy. She knows just how to cheer us up. Her brother does too. He is growing up too fast and I feel like I missed a week of his life this past week.

Before all this happened, Amy and I were in the process of doing a little remodeling. We hated our carpet and countertops. Funny how a tragedy like this makes you change your whole outlook on things. Things that used to seem so important are so trivial now. The kids spilling food and drinks on the carpet or dumping their dinner in the kitchen floor used to really stress us out. That is nothing. In fact, we actually laugh at that stuff now. It is amazing how it takes something like this to get your priorities back in line. We always felt like "prioritized" people until this happened. We did not realize just how "out of whack" our priorities were.

11/24/2003-Today we got Emma's MRI scheduled (to rule out any type of malignancy or benign tumor---unlikely), her appointment for hearing aids, and ECI (Early Childhood Intervention) visited to set up an education and rehabilitation plan for her. It is amazing how many resources are out there for us. ECI will contact the local school district to help set up a plan for her education. We also received a pleasant surprise in the mail from our the mother and daughter we met at Swensen's last Thursday. It was a book, written by the mother herself. It turns out that this mother is the former Director of Deaf Education at the University of Kansas. She has authored several textbooks. Her name is Barbara Luetke-Stahlman, Ph.D.. I had no idea we had met an expert in the field of educating deaf children. I never doubted that our meeting was nothing short of a miracle. Barbara sent us her book called "One Mother's Story, Raising Deaf Children: An Educator Becomes A Parent."

We returned from seeing my parents this weekend. We got there Friday night and Emma could not sleep. I imagined how she must feel not being in her bed and not being able to hear there in the dark. I ended up staying up all night holding her in my arms while she slept. I can not think of a more memorable time that I have ever spent with her. Everytime she cried in the night she would reach out and either grab my finger or rub my goatee on my chin and she would stop crying and drift back to sleep. Talk about being melted!!!! We all had a lot of fun and it was a nice break.

Tonight, I took Emma to her pediatrician for what I thought was yet, another ear infection. Just a simple cold. But she keeps rubbing her ears which makes me wonder if something more is going on. After that I took her to Old Navy to get some socks, mittens, and a hat to cover her ears. She loved the mittens but hated the hat! We got home and watched "Nemo" and played and wrestled in the floor. Amy really had Emma belly laughing tonight and it is clear that her "vocalizing" is still very much there. She chased her dog around and drank daddy's iced tea as she always does. Mommy held her down and tickled her and her brother jumped up and scared her. When she tried to touch the stereo equipment I instinctively yelled, "No Emma!" and she responded. We saw a similar instance last night with Amy and her. She obviously has some hearing but to what degree I really do not know. Part of me thinks we are in denial and the other says that I must grasp for every possible hope there may be some hearing left. Part of me also wants to believe that maybe she is suffering from a temporary condition that may be obstructing nerve conduction. If so, what? But we really are enjoying our time together as a family. Today Landon smeared toothpaste in the carpet and Emma dumped a large cup of coffee on the new carpet. Do we care? Not anymore! We are just glad to have them both happy and ours. Landon has been an amazing source of comfort and inspiration to Amy and I. When I tried to tell him what was wrong with Emma, I broke down. He saw me cry. He merely wrapped his arms aorund me, patted me on the back, and said "it will be okay daddy." Tonight, he told us "Don't worry mom and dad." He really knows how to brighten our day and has been a major source of our inspiration. He is one tough little kid. He is taking this broken arm thing in stride and really seems to only complain about his cast itching. I asked him if he wanted to play a sport next year and when I asked which one he said, "Baseball!" (of course). He will be a great example for his little sister. Tomorrow we will talk to the insurance company about the MRI and other benefits. We are all going to take Landon to "school" in the morning and have our regular Tuesday morning family breakfast at Starbuck's.

11/20/2003- The day began with us packing up and heading to our pediatrician for Lando's cold he has (lately we spend more time at doctor's offices than home). Nothing but a cold and I think that the itching under his cast is bothering him the most. He is speaking Spanish now and his uncle is having to translate what he is saying for us. Something tells me this family is going to be VERY multi-lingual. From there we went to the ENT for some counseling on the whole situation with Emma and cochlear implants. We are hesitant about going that route due to their invasiveness. Drilling a hole through the mastoid bone of the skull and destroying the cochlea just does not sound like something we should do. While there, the nurses and staff recommend that we go to the local community college to enroll in a sign class. Long story short, the local community college may not be the most convenient place for us to attend classes. But while there we met the instructor, who is deaf, and we immediately began discussing (on paper and him signing) Emma's condition. He would write (perfect grammar and great penmanship) and then sign. He told me not to worry, that Emma can do anything but hear. As I began to lose it he wrote "Do not worry!" He then took Amy and I to the sign language lab where many individuals, hearing and not, were "talking" away! Right then and there I knew everything was going to be alright. Cochlear implant or not---everything was going to be alright. It also turns out that Peter Jennings was going to be conducting a "townhall meeting" on campus there that night. Anyway, we left and as we do "broke down" and cried again on the way home. Got home, ordered a pizza, and decided that we would head across town to the library to check out some signing videos. I promised Landon that we could go get ice cream after the library. This one night, we decide to break with the tradition of going to Braum's or Baskin Robbins and go across town to "Swensen's." While waiting on our ice cream, I look up and see a girl with her back to me sitting at a table with headphones on listening to music. I also noticed that her right headphone had something hanging off the back. I grabbed Amy and told her, "Look I think that girl has a cochlear implant!" In the seven years of living in Texas, I have never seen someone wearing a cochlear implant. I do not think that Amy has either. We both said we had to talk to them. We approached them and sure enough, this angel in disguise was wearing a cochlear implant!!!! AND LISTENING TO MUSIC ON A WALKMAN!!!!!!!!! It turns out her mother has another child with a cochlear implant and she is a cheerleader at a university and CALLS HOME TO TALK!!!!! We began talking to our new found angels about Emma's situation and it turns out that their hearing thresholds ARE THE SAME!!!!!(Severe in the left and profound in the right). And she was talking and listening to music! Emma played with them and they talked to us as they signed. It turns out that this was their first time to go in Swensen's as it was ours! Talk about miracles! So now we have a new outlook on the cochlear implant. We are still going to try hearing aids first but it was nice to see someone give testimony to the miracle of this device. One of my first fears was that Emma would never hear music. That may not be true. Who says miracles never occur! By the way, the word "Angel" in the Bible is derived from a word meaning "messenger." Once again, another great day! Once again, God is guiding us and leading us.

11/19/2003- TODAY WAS A GREAT DAY!!! While yesterday was tragic for us in learning about Emma’s hearing, today was a new day. We hit the ground running this morning by calling the insurance company, the Callier Institute for Communication Disorders, school district and spending some great quality time with the family.

First: The insurance company and my company’s benefits department confirmed for us that speech therapy is covered 100% and that cochlear implants ARE covered (if we ever decide to go that route). Given the fact that Cochlear implants are $50,000 plus that was a relief. They also confirmed that we are not in an HMO and that we are welcome to go “outside the network” and they will still cover most, if not all costs (except hearing aids).

Second: After contacting numerous people and all directing us to the University of Texas at Dallas Callier Institute for Communication Disorders, we called them. I spoke with a lady named Connie who has a 21 yr. old son who was deaf from Emma’s age and completely deaf from first grade on. She said he is now married to a deaf woman, with a child (that has normal hearing), attends a college for the deaf in Midland, TX and has a deaf best friend that is going in with him in opening their own computer consulting firm. She gave us her home phone number and told us to call if we had any questions. She told us that we may be devastated right now but that deaf kids go on to live very happy and fulfilled lives. She said it will not take us long to get over this if we take the bull by the horns now. She also tells us that our local school district has an education program that starts NOW (at diagnosis) to get them ready for starting school on time. She also said that the Callier Institute will send a Parent counselor out to the house once a month to help us along with questions (and other family members). I guess I do not mind paying those high school taxes anymore.

Third: Amy contacted the school district about this program. EMMA STARTS SPEECH THERAPY NEXT WEEK!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And even better----they come to the house after hours so that the parents can learn to help reinforce the lesson!!!!!!!!!!!!!

Fourth: I have never enjoyed spending time with my family as much as today. We went to lunch together, took Landon for a doctor re-check on his broken arm where he got a cool NEW blue cast!!!! (they offered glow-in-the dark but we figured he was already having enough trouble sleeping). X-rays showed that the bone is healing perfectly! We took the kids to get a toy and got Emma a new “hello Kitty” cat and she just loves it. Landon got a new Thomas train and we had a blast. Emma laughed all day and she is so happy! That is all that matters.

And one more note: Maybe it is just wishful thinking but last night Amy, Emma, and me were here in the office watching Emma play (make a mess actually). As she turned her back, Amy slapped the desk hard and Emma about jumped out of her skin and then turned around and laughed. So she has some hearing and that is all we need to make this thing work. We will conquer this thing and the support we have received from all of you is overwhelming. I told Amy I think I have cried more out of relief of all the support we have had than over Emma losing her hearing. We certainly do not feel alone in this and much thanks to all of you!!!!!!!!!!!!!!!!!!!!!!!!! Words can not express enough how much we appreciate all the thoughts and prayers. We have a long road ahead and we need all the thoughts and prayers to continue.

11/18/2003- Today Emma was taken for in depth hearing tests. The specific test she had today was an "ABR with sedation." ABR stands for "Auditory Brainstem Response." The test was done while she was asleep. Three small electrodes were placed on her forehead an behind each ear. Earphones were placed in her ears and a series of clicks were played at various volume levels within her ears. As this is done, brain activity is monitored and recorded. The volume levels are increased until a response can be measured. While most of us can hear a whisper at 10 decibels and normal conversation occurs at about 40-50 decibels, it was determined that the first level that Emma could here at was 80 decibels in her left ear only. When the sound was turned up to 95 decibels, her brain detected nothing from the sound on her right ear. One possible error here is that the tests can only go to 95 decibels. Human ears can tolerate up to 120 decibels. On a scale, 0-20 decibel hearing is considered normal. 21-40 is mild hearing loss. 41-60 is moderate hearing loss. 61-80 is severe hearing loss (Emma's left ear). 81+ is profound (or deaf) (Emma's right ear). After we were told the news, the audiologist explained the situation and took ear molds for hearing aids. She said that they now come in different colors so some kids see them as a fashion statement. Once she awoke we packed up and got in the car and just fell apart. However, the whole trip home, we did nothing but discuss the positives of this. In fact, we really have not discussed much negatives of this. We both think about them but we have not discussed them. The thoughts that went through our head were that our daughter may never: hear her mom or dad say "I Love You", be able to record her first words in a baby book (although Emma's first words were "mama")dance to a song, talk to boys on the phone, hear an opera, hear a movie, hear the radio, hear sounds of nature, hear her own child's voice. This was a pretty sobering reality. But we also know that God gave her to us for a reason. We know that she is one happy little baby now and that you rarely see her not smiling or unhappy. She is comical in nature and is always wanting to play a game with someone. This will not break her little spirit!