Emma Updates (March 2004 Archive)

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March 2004 Archived Emma Updates

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Emma's Cochlear Implant Photos

3/31/2004-Emma is having some balance issues. Although she is walking pretty good she seems to be losing her balance quite often and falling. We are not letting her walk around unassisted but we expect this to pass soon. It HAS NOT kept her from being Emma though! I think Emma is talking and even laughing more (which we did not know was possible) than she did before surgery. She is back to playing with the remote controls, going through all the DVDs, and picking on her brother. He is a good sport though and laughs when she picks on him. They are becoming the best of friends. Landon was so distraught when Emma was actually in surgery that he looked at me and Amy and said, "Come on dad, let's go rescue the Princess!" I had to tell him that she was in good hands with Dr. Bauer and the angels that Landon had prayed for to be at her side during surgery. He has been a strong source of inspiration and strength through this whole thing.

I told Amy tonight that I feel like the old person that I was before Emma was diagnosed. I thought that person would never return. Amy is back to being normal as well, however she was so strong during all this that she always seemed like she would conquer this. As for me, I had my doubts. Now----we are only filled with hope and excitement. There will always be that part of us that wishes Emma could hear everything as we hear them but then again, none of us hear things like we think we do. Ever hear how weird you sound on a tape recorder? Does not sound anything like your brain has had you programmed to think you sound. That is how a cochlear implant will be to Emma. If we were to ask her in ten years, "how does it sound?" She would look at us like we were idiots and say, "like hearing!" Her brain will know no different. Her brain will relearn what she is hearing as normal. So I guess you could say 'normal hearing' is a very relative phrase.

3/30/2004-THANK YOU!!! Amy, Landon, Emma, and I would like to express our deepest appreciation to all of you for walking with us through this difficult journey! The prayers, emails, gifts, and thoughts have been warmly received and it has meant so much to us to have not felt alone throughout these last few months. To us, the hardest part seems over (that is the repeated sedation, testing, and medical procedures). But we know from the other parents that we have met, that the real work has only just begun. More than likely, there will be even harder days ahead (although I can not imagine any more difficult than last Friday). Amy and I have never felt like there was a challenge we could not overtake. When Emma was diagnosed, we felt (for the first time) that we are faced with something that seemed to be an overwhelming challenge (and yes---sometimes felt impossible). We have finally reached a point where we feel like we have caught our breath and the sense of urgency is gone (to some degree). Now the task of teaching Emma to learn to listen and talk takes over. From all indications, Emma should do great and we have no reason to suspect otherwise. We now shift our focus from researching the medical aspects of cochlear implants to AV Therapy, education, and literacy. Emma has already developed a pretty strong receptive vocabulary and we have no doubt that the expressive will follow. AGAIN, WE SINCERELY THANK YOU ALL FOR THE CONTINUED SUPPORT! We have saved every email, guest book entry, card, note,........everything for a scrapbook that Amy plans to make for Emma on her CI journey.

Emma is back to talking up a storm and wearing her hearing aid. It has been feeding back a lot and we think it may be a little fluid in her ear causing it. She is back to responding to her name and her dog when she barks. She seems to have lost a little hearing but not enough to where she does not respond. She saw Dr. Bauer this morning who said she appears to be doing just fine.

I plan on revamping the website once I get a chance. It needs a new look and I want to add the technical section for other parents. We did not really plan on keeping it going but it has received so many hits from parents in similar situations that we feel like we should. We have received hits from over 13 different countries including Taiwan, Brazil, Egypt, England, Ireland, Australia, Canada, Mexico, and Argentina. We have met numerous families in similar situations that have been there and some who just found out about their child's hearing loss. I can say that the hearing loss community and parents of kids with hearing loss is like one giant family. We know that other parents' websites were our main source of info and what helped us get through this. We also plan to post audio updates of Emma as she begins to develop speech. Of course we will continue to update this site until I get time to design a new one. Who knows when that might be!

Also, many have asked the question, "what will Emma hear?" The true answer is we have no idea. But I found some internet links that will give you an example. Please note that these simulations only give examples of 1-8 channel implants. Emma's implant is 12 channels. Studies indicate that adults do fine with 8 channels and kids need at least 10 to develop good speech. CLICK HERE TO HEAR THE DEMOS.

3/28/2004-TWO DAYS AFTER SURGERY/SECOND UPDATE-Well Emma continues to be Emma. We are having a hard time keeping her from being too active. She has completely returned to the same happy little comical Emma. She decided that she would start her own little AV Therapy session with her box of dinosaurs and animal puzzle. She is even making some sounds we have never heard tonight which we thought was kind of odd. I emailed Dr. Bauer to make sure that he did do surgery as she does not act as though anything out of the ordinary has happened. We received our first email attack from a deaf culture advocate (at least he claims to be). I can say that he does not represent the run-of-the mill "deaf culture" people I have met. I knew the deaf culture community was against CI but I never knew they thought it was their business to tell parents what to do or how to raise their children. I guess every group has its radical extreme. We knew they opposed CIs but never expected someone we do not even know or have anything to do with to stick their nose into our business though. I get the impression that this guy was a little bitter over something. Oh well, enough about that. Emma is doing great! The photos above are of her this morning. She wanted to go outside again and pull her wagon around. She is one amazing little girl.

3/28/2004-TWO DAYS AFTER SURGERY-We just took the pressure bandage off and NO SWELLING!!!! The incision is tiny and not inflamed at all. We are amazed at how minor this appears to have been. Emma still has NO balance problems, walks fine unassisted, has had a great appetite with no nausea or vomiting and you would never know that she had surgery two days ago! She looks incredible and is acting like normal old Emma. She even has her new hearing aid in her left ear which is nice as it was getting difficult again not having her respond to her name when called. Emma also does not seem to have any taste disturbance. She was eating lunch and accidently picked up a pickle (she does not like pickles) and took a bite, made this horrible face, and spit it out. She is eating a lot, drinking a lot, and playing a lot. Back to being normal Emma. She played outside again today for a couple of hours pulling her wagon around and playing in her playhouse. The only regret I have in this is that I could have been have as tough as Emma (emotionally). They say the surgery is much more traumatic on the parents than on the child. It is amazing how true this is. Amy and I can not explain how relieved we are! I told Amy that I feel like the person I was before Emma was diagnosed. It is so relieving knowing that Emma does not have to be sedated anymore for her hearing (at least anytime soon). Mapping and AV Therapy is all we have ahead of us and we actually like doing the AV Therapy with her. A lot of times, the rewards of AV Therapy with Emma are immediate. No more fear. Nothing but excitement now! Knowing what we know now, we stressed a lot for no reason. But I can not see how we could have not stressed with the fear of the unknown. Emma is one amazing little girl. We are so amazed at how tough she is and how she hardly complained at all. Landon has been taking care of her today. He pats her and tells us that Emma is going to be "just fine." He woke up from his nap to see her without her bandage and he said "alright! Emma's all better now!" He was so concerned! Landon has always had this overwhelming compassion for others in need. He has always felt bad for people when they are sick or hurt. It is so nice for things to get back to the way they were!

3/27/2004-THE DAY AFTER SURGERY-Amy stayed up all night with Emma and I slept from about 1am to about 3:30am. I woke to check on them and in the living room Amy was watching a bunch of stuff she had recorded on TIVO. Emma was asleep on the couch next to her. She seemed to be having some pain as she awoke a few times and cried. I tried to go back to bed but just layed there and prayed to God that we made the right decision (I hear this is normal thinking). About 6am I relieved Amy and she tried to go back to bed and sleep. Emma kept her hand on my beard while she slept. That was the same thing she did one night when she could not sleep. She had a dose of Tylenol. She looked horrible and it was so hard seeing her like this. However, she had no vomiting and no nausea medication given. She drank juice all through the night and held it all down. I dozed off for a minute and awoke to the sound of Emma trying to "say" something. When I opened my eyes she was pointing to the Bugs Bunny Band Aid where her IV was and signing rabbit and trying to say hop. When she saw my eyes open she gave me a BIG smile! I immediately got teary-eyed knowing that the old Emma was back. Same little comical Emma bounced right back. She wanted her stuffed horse that mommy had got her and so I decided to put her favorite movie (Disney's "Spirit") in. She smiled, and talked, and talked, as the credits came on. I went to tell Amy that she could sleep in peace now that the old Emma had returned. Amy couldn't stand it and had to see for herself. This was the ultimate feeling of relief. BY 11 am this morning, Emma was out back riding her little car, playing with her shovel and pale, and having me pull her around in her wagon on the deck. As we speak she is sipping on some ice water, eating come cheerios and saltines, and watching Toy Story in her little rocking chair (don't worry, she is strapped in). There seems to be little to no swelling, little to no dizziness, NO vomiting, and I think the worst pain is a sore throat from some drainage and the breathing tube. The site of incision does not seem to be bothering her much as far as pain. She has NOT tried to take her bandage off. The old Emma is back and the only indication that she had surgery yesterday is the bandage on her head and our house is a mess! Amy ran to get her a spring outfit that does not pull over her head. It is too nice this weekend to keep her inside. She wants to be outside. Oh yeah, and her balance is great! She can walk on her own---a little wobbly but a lot better than we expected! She seems to be more woozy from the morphine they gave her than anything. If you had asked me this morning at 3am how we were feeling I would say we were worrying about whether we made the right decision (meaning I was not sure if I could stand seeing her in the discomfort she was is). But looking back, I think the hardest thing we are going to have in her recovery is keeping her from being a normal 2 year old. I had a feeling Emma would not be down long (as she seems to buck the trend on everything). If someone told us that she would be down and dizzy for days, some part of me said, "yeah but you don't know Emma."

We can not say enough about our team yesterday. From the valet guy to Dr. Bauer, the team at Children's was exceptional. Our anesthesiologist was so great! Everyone was great! Dr. Bauer also made this tiny incision (with very little hair shaved). To tell you the kind of physician Dr. Bauer is, he saved her hair clippings, put them in a bag, labeled them, and brought them to Amy after the surgery and said, "Here, for Emma's baby book." We are eternally grateful to him and our support team from Callier.

3/26/2004-Emma had her Cochlear Implant surgery today. Things went well I guess. This was much much harder than we ever anticipated. The day started early (6am). After we got to the hospital, Dr. Bauer came in and gave Emma her Med El backpack with the Meddy Bunny in it, a little stuffed duck, a toy cell phone, and some other fun stuff. He drew a line with a marker where the small incision would be made. Emma went back at 10:40am. At 12:40pm, we received a call in the waiting room that they were JUST then starting to drill into the mastoid. My mind immediately began wondering what was the delay but then I realized, once they got her prepped, under anesthesia, etc., it was okay. About an hour later, we got another call this time from Dr. Bauer stating that he did experience a gusher (but it was very mild), and THEY DID ACHIEVE FULL INSERTION OF THE STANDARD MED EL ELECTRODE ARRAY!!! This was what we were wanting to hear! The gusher is stated by the FDA as an elevated risk factor for meningitis but she has been vaccinated, received Rocephin (antibiotic) during surgery, and will take a round of Cefzil for ten days. Emma DID vomit a little after surgery but it seemed to be more due to the throat irritation from the breathing tube. She had a little trouble coming out of anesthesia as she did not want to wake up (she went in to this pretty sleep deprived). We also could not get her blood oxygen saturation to stay up when she would wake up (probably due to crying). She has a pretty hoarse voice from the breathing tube and almost sounds a little croopy. She had a Xopenex breathing treatment and it really seemed to help. Her face does not seem to swollen and it appears there is NO facial nerve damage (although Emma has not smiled yet since the surgery). She did come home tonight and watched a little TV sitting in her mommy's lap. She seems to be breathing just fine, no fever, and seems to be sleeping quite well. I am glad someone is! I will post the photos once I get a chance and once I sleep.

3/25/2004-About 18 hours to go now! The hospital called to give us all the directions for tomorrow. They have her scheduled for surgery at 9:45am and she has to be at Children's at 8am for pre-op screening. She is in usual comical form today and is chasing Landon around the house as we speak. Amy bought her a little stuffed horse today as her present to open after surgery. She loves horses! Antibiotics have been pre-filled as well as a prescription for Phenergan (for any nausea she may have afterwards). I got on the internet last night to try to scare myself one last time by reading about the incidence of meningitis and the risk factors. Emma is at a "high risk" according to the FDA and CDC. But as much as I would like to avoid doing this, it is not what Amy or I would like. It is about what we think Emma would want. We want to give her every possible option for a great quality of life and the implant gives her every option. She can always be deaf---all she needs to do is remove the external equipment. But the only chance of her hearing is with the implant. I will post another update once we are home from surgery!

3/24/2004-36 hours to go and counting! I feel as though God has lifted all the fear from me and I feel as though I am at peace with the situation. Amy seems to still have some anxiety. I do not blame her. We are glad we delayed surgery from a month ago as it has given us time to seek out more answers to questions that we never felt clear on. Dr. Bauer has been incredible about returning my emails on questions! I have to say I feel like all of my questions are answered. Actually I have been thinking more about a little friend we have met through my brother and his wife. Her name is Savannah Hurley. Savannah has a brain tumor and is not doing very well. Amy and I can not seem to get her off of our mind. Amy openly wept for her today and I have been fighting back the tears as well. We never realize how much we take for granted in life everyday. Just waking and getting out of bed is such a blessing! The things we can't stand to hear like a screaming child or the high pitch squeal of a loose fitting hearing aid, yet for some they would love to be able to hear those things. Amy and I have met parents that would give anything to ONLY be dealing with a hearing loss. It sounds strange at first but seems to really put things in perspective. Emma is going to be fine. She will do great! We ask that you not only pray for Emma as she goes into surgery but will you please pray for Savannah and her family as well as they enter this most difficult time.

3/23/2004-Emma received her new Perseo hearing aid today. We can already tell a difference. She seems to jump now when the dog barks or when we talk too loud. She is also vocalizing much more just since she received her new aid. Her thresholds did not change but she seems to be hearing more and localizing sound a little better. We also noticed we are not having to talk as loud. She seems to be responding to her name when we speak at normal levels. This hearing aid has more of an omnidirectional microphone and that may explain her improved response. Emma also likes the fact that it is fuchsia colored! The first photo at the top of this page shows her new aid.

3/20/2004-This week we sent Emma's MRI films to NIDCD/NIH in Rockville, Maryland to see if she was a candidate for a genetic study looking at hearing loss and genetic factors behind Enlarged Vestibular Aqueduct (EVAS or LVAS). Two more ENTs read the films and, no surprise, they confirmed everything we already knew (bilateral massively enlarged vestibular aqueducts---more pronounced on the right---with mild Mondini's cochlear malformations). It does turn out that Emma is a candidate for the study and it would involve all of us flying to Washington D.C. for a week for extensive testing (blood work, thyroid tests, and an MRI of Landon's inner ears). All this at no charge to us. If we do this study it will be the second NIDCD/NIH study that Emma would be enrolled in. I had a great conversation with the geneticist involved with the study and learned quite a bit about Pendred's syndrome and Enlarged Vestibular Aqueduct (EVAS or LVAS).

Many of you know that we traveled to the Dallas Zoo two weeks ago today. Yes, this is the same zoo where the gorilla escaped on Thursday and bit 3 people. In fact, the photo above of Emma and Landon petting the statue of a chimp was right where it escaped. I guess we lucked out on not being there at the right time!

Well less than a week to go until Emma's surgery. Amy said she was going to have a hard time this week but I am getting more and more excited! We both have our own fears. I have already began focusing on the hookup day (which will be April 19th) and not the surgery day.

Emma gets her new hearing aid on Tuesday!!! We are excited to see how that goes. She has pretty much outgrown her first set of hearing aid molds and the hearing aids are beginning to squeak all the time. The new hearing aid should eliminate most of the squeaking.

3/14/2004-We celebrated Emma's second birthday tonight. Emma had a blast! The weather cleared off and was very comfortable so we celebrated outside in the backyard. It was a little muddy but well worth it. Emma got all sorts of great stuff from all her friends! She was overwhelmed by all the gifts and I think that she has really caught on to the "opening presents" thing. We cooked hotdogs and had some of the Princess Cake that her Aunt Mandi picked up for her. Her new little friend Jared showed up with his brother. Jared received an implant in January and a second one two weeks ago. He is doing great!

Landon has started saying that Emma needs a "hairplant" instead of implant. I have to remind him that daddy is the one that needs the "hairplant" and Emma is the one that needs the "implant." It was nice to catch up with friends that we have not gotten to see as much as we would have liked with all that is going on, but it was nice to know they understand.

It was well after 10pm when we finally got Emma down to sleep. She was so excited about all her new toys we had to let her stay up and play with them. She was her comical little self tonight and really laughed it up. Definitely a birthday we will remember!

3/9/2004-The photo slide show of Emma and her daddy is back up and running. You will need a free copy of Real Player to view it. Your PC may already have this installed.

Landon's page is FINALLY up and running. It has been a struggle just keeping this part of the website up to date, let alone any other parts. But Landon is going to be helping his daddy update his page from time to time. We thought we would put some cool links to some of his favorite websites and interests.

3/8/2004-EMMA'S COCHLEAR IMPLANT SURGERY SCHEDULED AGAIN TODAY!!! Emma is now scheduled for surgery on Friday March 26, 2004 with Dr. Bauer. We met with Dr. Bauer today to discuss all of the final questions and discuss risks and outcome expectations. He is not only a great doctor but a great person! Before he came in the room I told Amy to pay particular attention to what his answer would be when I asked about whether full electrode insertion was going to be possible or not. When he came in, he greeted us and said. "well before we discuss any questions you may have, I would like to say that after seeing Emma's MRI, I think that FULL INSERTION WITH A STANDARD ARRAY is very likely." I had not even asked the question and he was already answering it! He answered all our questions so thoroughly and left no stone unturned. He also went ahead and gave us the prescriptions for antibiotics to be filled ahead of time for Emma. Another funny thing I noticed is he remembers all of my previous questions and concerns from previous conversations and visits! Emma loves him and Landon talked about him all afternoon. We are so excited. Our fears and anxiety seem to be easing. He also said that he was most certain that Emma DID have hearing at one point. This is important because the central auditory system does much of its developing in the first 6 months of life. We think she got that.

Dr. Bauer is going to take blood for genetic tests for Pendred's Syndrome and Connexin 26 during surgery. And although a cerebrospinal fluid gusher is likely, he does not see it being a problem. He said that total surgery time would be 3 hours (and he defined surgery time as the time Emma will be out of our sight). Anyway, he is a great man and so genuine. The team is now in place. Insurance issues seem to be resolved, the follow-up care (mapping and therapy) is all in place, and Emma will have a new high powered hearing aid next week!!!

3/7/2004-We took the kids to the Zoo this weekend. They had a blast! The monkeys were the overwhelming favorite (both kids laughed and laughed at them)! Emma loved the lions of course being a Lion King fan. Landon referred to the Meerkats as "Timons" and the wild boar as the "Pumba" (these are the respective names in Lion King). Emma had her first taste of cotton candy and loved it! She had it stuck to her upper lip by the end of the day and it looked like a blue mustache. We had so much fun!!! We were there about 6 hours and all got a little sunburn. It was one of the most beautiful weekends we have had in a long time. We will post photos on this page later in the week.

The website has received more hits in the first seven days of March than it did all of February. Some as far away as Taiwan and England. We have had hits from many other parents of newly diagnosed children, Mayo Clinic, and those that have/are in our shows and offering support. We can not thank everyone enough for the support we have received thus far.

I bought Emma a new Dr. Seuss book. It is a great AV Therapy book. It is called "Go Dog Go!" It uses the words combinations "up" and "down" as well as "in" and "out" quite often which is a couple of the "power words" that we are teaching her. She has come so far. We can not wait to get her new hearing aid next week!!!

3/4/2004-We ordered Emma's hearing aid today from Callier that will be worn on the NONIMPLANTED ear. We ordered the latest state of the art hearing aid, the Phonak Perseo. This LEVEL of hearing aid was recently featured on the ABC show, Extreme Makeover, although it is not the exact one. Apparently these are the best of the best hearing aids.

3/2/2004-Amy and I took Emma to the Callier Center on Tuesday to enroll her in a three year outcome study that will compare speech development in 40 pre-linguistically deafened children versus 40 age appropriate hearing peers. The goal is to look at how well speech development in cochlear implant kids compares to that of their hearing peers. The study HAS NO CORPORATE SPONSORS and it will be a landmark trial. It is being sponsored by the National Institutes of Health/NIDCD and Johns Hopkins University. There are 9 study sites around the nation. The beauty of this for Emma is that it is nothing she would not have to do anyway but it is provided at no charge or cost to her insurance (and we are trying to preserve that lifetime maximum benefit). It also extends the warranty on the external parts of the implant by two years (that usually would cost us about a $1000 a year) and pays a very small honorarium for participating.

It was a long day. We arrived at 7:45 am and concluded with a "cochlear implant team" meeting at 4:30pm. We began with a two hour speech, motor skill, and cognitive evaluation. It was really more like a free two hour AV therapy session. Emma clicked immediately with the therapist and we are now considering her for Emma�s AV. She is a much longer drive but will see Emma for one full hour (meaning actual less miles driven in a week).Emma just loved her. Next we went for 2 hours of auditory behavioral response sound booth testing and otoacoustic emissions (OAE) test (that test the functionality of the cochlea). No new news to report there----still absent OAEs. Next we moved on the more cortical testing. Most have seen the photo of Emma with electrodes all over her head. That photo looks much worse than it is. If you could see what is going on there, Emma is snacking on some pretzels, drinking juice and watching Toy Story (and laughing)! That is that test and it showed that she is definitely benefitting from hearing aids as the central auditory system continues to develop. However, it shows that development to only be that of a 6-8 month old child. This gap will close in to be around her normal age group within 6 months of the cochlear implant. So her central auditory system will be caught up to her age appropriate level by fall 2004. Then we moved on to video taping of Emma and mommy playing behind a two-way mirror. Amy was doing AV Therapy so well with Emma, the lady video taping asked me if �my wife was a speech therapist!� That was reassuring to both of us. It seems Amy has taken to AV Therapy like a duck to water. After 45 minutes of taping, we moved on to a cochlear implant team meeting where Amy and I got to hold each internal device in our hands and look at the details. We also got to put all the external components on our ears and Emma�s ears. Nothing changed our decision though. We are staying with the Med El implant. We liked aspects about all of them but the studies (in Emma�s case) support Med El.

For the first time since diagnosis, Amy and I feel that we have a solid team in place to move forward. There are so many �brains� working on Emma�s case I have lost count. Not to mention all the grad students that are studying her case as well. Not only were all our technical questions answered but they were encouraged! Many of the people at Callier completed or answered our questions before we could finish! A reassuring feeling. We also liked having a �team meeting.� That was a new concept to us and it was reassuring and very efficient to be able to ask questions to a team of people that could give many different aspects.

The only concern that came out of the meeting were the possible surgical complications that may be experienced due to the enlarged vestibular aqueduct. I have researched this extensively and asked Dr. Bauer about how he would handle this. I feel confident that even if there is a complication, that she will be fine. We were also told that based on Emma�s benefit with hearing aids, we should expect her not only to NOT have a �deaf accent� but to probably to even have a �southern accent.� I was told by many family members to �pick the implant that came with the southern accent!� It looks like southern dialect thing has strong potential!

The funny thing about the whole day was Emma�s behavior. We thought that she would have become grouchy and irritable by the early afternoon. But she was �hamming it up� even on the rush hour trip home and was just talking and talking all the way home! She seemed to have a lot of fun. She even let them take ear molds for her new hearing aid (this involves squirting a gel into the ear and letting it dry) without complaining! Not one tear all day! In fact I think she laughed more than usual (which is already a lot)!

Anyway, it was a great day! It sounded like a long day but it was so productive that it flew by!