Tuesday, January 23

We Have Laughter!

Drew started laughing today. Drew's Dad and I have suspected for several days that he is laughing while laying in front of his conversation mirror, but we weren't quite sure. Well, Gamma and Uncle Ran-Ran confirmed that Drew was in fact laughing at some rather silly faces Uncle Ran-Ran was making today! It is the cutest laugh you will ever hear. It is as if it comes up from his belly and finally produces sound. What a wonderful sound!

It's pretty amazing to me that he has never heard anyone laugh, but knows how to make the sound. It must be instinctive. Laughter. A beautiful sound.

Monday, January 22

One Step Closer

We were in Cincinnati today for another round of appointments and are now one step closer to having Drew receive his cochlear implants. Today's appointments included a CI consult for Drew with Dr. Daniel Choo and follow up on the genetic testing results.

On the CI front, Drew is moving toward candidacy. Dr. Choo is confidant that hearing aids are not going to benefit Drew enough to develop his listening and speech, and he is confidant that given Drew's cognitive abilities, he will perform optimally once he is implanted. From here, we will be having an MRI run in early June. His cat scan, scheduled for March 14th, has been cancelled. Dr. Choo is certain that Drew's cochlea is formed correctly, given the genetic testing results, and does not feel that the structural scan is as important as the neurological scan with the MRI. Then we will move toward insurance approval and we all hope to have the surgery performed when Drew is around 10 to 11 months of age.

We discussed for some time the surgical risks and limitations following the implant. There are minimal risks to balance and taste, but nothing that would prevent us from having Drew implanted. Drew's Dad was happy to hear that football is not out of the question! Although Dr. Choo does not actively promote football, lacrosse, rugby or hockey, there is no risk to Drew's overall health by playing full contact sports. The only risk is that the head to head contact could break the internal device, which would then have to be surgically replaced. Dr. Choo told us that one of his paitents is playing football as a freshman in college this year! We'll have to cross that bridge when we come to it, but for now, all things are possible. Maybe he will be the first MLB player or PGA golfer with an implant? Who knows?!

On the genetic testing front, we made tremendous progress. I had a hearing test today, which showed no hearing loss, and had my blood drawn for the mitochondrial abnormality test. From these DNA test results, we will know the risk of aminoglycoside induced deafness for myself and our daughter. Dr. Choo also explained that following my results we will know the exact path to take for testing others in my family, primarily my sister. We can expect the results in about six weeks.

Additionally, our daughters hearing was screened today. Given the genetic link for Drew's hearing loss, her hearing will be screened yearly until she reaches six years of age. She did have a mild hearing loss today in her left ear, which was attributed to fluid from her cold. Her tympanogram scores were indicative of fluid in both of her ears (even with the fluid, she was able to hear with her right ear). We will have a follow up test run, but Dr. Choo and the audiologist were both very confidant that she has no hearing loss at this time. As her parents, we are confidant too, especially since her language is developing ahead of schedule. She put four different word phrases together just today!

While we do get very anxious at times trying to move this process along, we are making progress. We know that Drew is in great hands with the team at Cincinnati Children's and we are so excited that we can take the journey with him. Even though the road is a little longer than we would like, all good things are worth waiting for!

Friday, January 12

Genetic Testing Road Block

I had thought that I would be able to have my genetic testing done through my OB/GYN's office this week for the mitochondrial abnormality that was found in Drew. I thought when they told me their lab ran this test it was too good to be true, as it is a very rare abnormality. It turns out that I was right. Their laboratory will only run the test for the connexin 26 abnormality, which I already know I carry. It is the testing for the mitochondrial abnormality that is crucial for me to know in order to understand my risk and my daughters risk of aminoglycoside induced deafness.

At this point, I am very frustrated. It seems to me that it should be easier to have this testing run. And it seems that I am the only one concerned about getting results, maybe because it is my hearing at risk. I do not know what else to do at this point. I have contacted Dr. Choo's office on several occasions regarding this testing, and his nurses tell me that in order for Cincinnati Children's to run the test I will have to have an audiogram test. They referred me to my primary physicians. Now I know that they do not have the capability to run these tests, my only option may be to have the testing run in Cincinnati.

I am going to talk with Dr. Choo about this at our CI consult on January 22nd, since he is the one that told me I needed to be tested. My hope is that he will order the test that day or refer me to a geneticist for further evaluation.

Wednesday, January 10

Baby Steps

We have doing activities with Drew on a daily basis to stimulate communication and to see if he is able to detect even the loudest of sounds with his hearing aids. We are enrolled in a monthly parent education program through the Columbus Hearing Impaired Program that gives us specific activities that can help stimulate his hearing. Our current project: sound detection. Without sound detection, we will not be able to move toward developing oral communication.

We were given several activities to help determine if Drew is getting even the slightest bit of benefit from his hearing aids. The results are not surprising to us: he is not detecting even the loudest of sounds. Our early intervention specialist told us that the majority of hearing impaired children are able to detect the beat of a very loud drum, so she sent us home with one last night. While we had fun playing with it and doing the activity with a very happy Drew, he had no idea what was going on. He just sat in his bouncy seat all smiles as we banged this drum in his ear. While it is discouraging not to see any reaction from your child as you pound on a drum less that a foot from his ear, we were not expecting any different response.

We have also been working on stimulating Drew's desire to communicate. We have "conversations" with him constantly, and every therapist that meets him is very impressed by his conversational tracking. This means that Drew is great with moving his eyes between your eyes and mouth as you speak to him. He makes excellent eye contact and will hold a conversation with you, meaning you speak, and then he will coo, grunt or squeal back at you. It is quite fun when he really gets into it! We are really encouraged by how well he is doing with his conversation at such a young age, given the fact that he has never heard a sound!

We had our first music class tonight. We enrolled in We Joy Sing as a recommendation of our early intervention specialist. She told us that a lot of hearing impaired children enjoy the vibration of the music and it stimulates interaction with other children around them. Well, Drew fell asleep! He couldn't hear anything with his hearing aids on, and they kept falling off, so we gave up! Luckily his big sister is the one officially enrolled in the class and she had a ball dancing and singing.

We're trying. One of these days an activity is going to work!

Sunday, January 7

Cochlear Implants Do Not Eliminate Deaf Rights

Recently we described how we were kind of at a standstill. We have some tests scheduled for later in January, and a CAT Scan in March. We are attending counseling sessions and so forth, but with no visible signs of the hearing aids working, we are just doing our best to learn about the various viewpoints on Drew's hearing.

If you've followed along, you've probably seen the video footage of various children being exposed to sound for the first time after their cochlear implant surgery, which we find exciting. On the other hand, I have also posted some links to the other viewpoint - one in which the implant technology is viewed (in the words of some) as genocide of the deaf culture.

Michelle Dawson has a blog called "The Autism Crisis: The Science and Ethics of Autism Advocacy". In her January 2, 2007 entry entitled "How Human Rights Dissapear", she expresses her concern that the cochlear implant technology may be contributing to the dissapearance of basic human rights of deaf people.

In this entry, Ms. Dawson responds to an article that appeared in New Scientist Magazine entitled "Ear Implant Success Sparks Culture War"that asked:
COULD the end of sign language for deaf children be in sight? A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.
This article continued:
Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."
Ms. Dawson responded to this section of the article stating:
Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.

Setting aside arguments about culture, this is a demonstration of how human rights disappear. A group of people has their essential human differences pathologized. Their basic human qualities are then denied--because their differences have become unacceptable. A treatment is then promoted that promises to eradicate their pathology and make them normal, or at least make them appear to be as normal as possible. When a human difference is classified as a pathology and then declared treatable, those having this difference--in this case, deaf people--no longer have rights as themselves.
Pardon my possible ignorance, but I just don't see as how "promoting" the cochlear implant "treatment" is eliminating "rights" of deaf people.

First, what rights are being referred to? In my reading of the blog entry, I don't see a description on what rights have dissapeared since the advent of the cochlear implant technology. When the quoted article states "People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like", the author is obviously not suggesting that the non-hearing deaf do not have these "rights". Rather, the author is suggesting that having the ability to hear may increase the opportunity to hold certain jobs unavailable to those who can't hear, the opportunity to meet and converse with possible mates that hear, and so forth. The use of cochlear implants does not reduce the "rights" of deaf people in the way suggested.

Second, the entry insinuates that the cochlear implant is responsible for "pathologizing" the deaf person's "essential human differences". I don't mean to be crass, but deaf persons, blind persons, persons of a different race or culture, persons with an illness or disease, or anyone with a special need of any kind has been "pathologized" for hundreds, if not thousands of years. We are only beginning (in relative terms) to break through some of these issues due to education of the public at large. Why is the cochlear implant villified? What has changed other than giving those deaf people who wish to use sound to communicate the chance to go that if they wish?

Earlier in this country's history eugenic sterilization was implemented to "combat" the "problem" of the mentally ill, mentally retarded, and yes, even the deaf. This map below shows states that had implemented such a program as of 1921.

The idea was to prevent anyone with these "pathologies" from having children who could pass along the genetic "defect". This program continued until even after World War II when some began to feel uncomfortable with the similarities the sterilization program had with Adolph Hitler's dreams of a superior race of Aryans and matching quest to erradicate the Jewish faith.

Some "deaf culture" advocates would have me believe that the cochlear implant itself is similar to the tanks and ammunition of Hitler's army, with the population of the U.S. bent on advancing a holocaust against the deaf race. I feel that this is disingenuous.

The subjects of sterilization in America, and the victims of the holocaust were unwilling subjects. Not only were they unwilling subjects, but they lost the ability to do something due to the aggressor (ability to have children, and ability to live, respectively).

The "subjects" of cochlear implant surgery either 1) choose the surgery as an adult after an informed decision, or 2) have the surgery as a child, before they can make an informed decision for themselves. As far as I know, no one has ever been forced by the government, or a third party to have the implant.

Now, there is a sub-issue in this whole debate concerning whether parents should be permitted to have their child implanted. I will leave this issue alone for the moment, since it deals with wholly different issues such as what rights a child has, the responsibility of parents, when a person can give consent, and so forth.

Finally, my view is that an adult or child with profound loss at high db's loses nothing by having the implant. Should the adult wish to not hear for any reason, they can remove the processer and have the relief of silence. Should a child grow up and decide they do not want invasive noise in their life, they can similarly remove the processer and have quiet.

The only real loss I can see (assuming a successful surgery) is the loss a child faces when his parents choose not to have them implanted. Studies show (see above article) that children who are implanted earlier in life can develop higher level language skills than those who are implanted later in life. By deciding to let your child decide later in life whether they want an implant, the decision is made to not develop these language skills that can never be regained fully. I would rather ensure my child have these skills, and then decide not to use them, rather than decide on their behalf not to develop them in the first place.

From what I've seen, the deaf community is a proud community, and they have reason to be. However, I don't believe that the anger I have seen toward children and parents with cochlear implants is either warranted or fair. I certainly don't wish to impair the rights of others, and I don't support the "destruction" of the deaf, non-hearing community. However, I don't believe that the implant can be fairly described as a weapon in such a holocaust. It simply gives choice to those who wish to utilize its technology. Those that are not interested may choose to ignore it.

It seems to me that there is an outcry from some to eliminate the choice to have an implant, especially in young children. To me, should that outcry be heard, that is where a real loss of rights would occur.

Saturday, January 6

Genetic Testing Progress

It has been a bit of a struggle over the last week as I have been trying to secure the genetic testing I need to have run. With the results of Drew's genetic testing showing a mitochondrial abnormality, I need to find out if I have the same abnormality. By knowing this information, I will know my risk of aminoglycoside induced deafness, and I will know the potential risk that my daughter may carry this abnormality as well.

I could have the testing run through Cincinnati Children's, where Drew's was done, but they require an audiogram and I would have to drive to Cincinnati to have my blood drawn. So, I contacted my OB/GYN's office. I learned that their lab will run certain genetic tests, and fortunately this is one of the ones they perform. In addition, they contacted my insurance company for me and found that the testing is covered. They told me that I can expect the results in four to six weeks.

Pending the results of the test, others in my family may need to be tested. If I do not carry this abnormality, meaning that it is a new mutation in Drew, my daughter will be the only one tested for the mutation. It is possible, although unlikely, that she received the mutation and deafness will only ensue with aminoglycoside antibiotics. Because this mutation is generally passed to all children of an affected mother, knowing that I do carry the mutation will additionally require testing for my sister and mother, so we can determine their risks for deafness, as well as my sisters risk for passing this abnormality on to her children.

All of this genetic testing is a new road for us, and I am learning more about it everyday. I will let you know when we receive the results and what our next steps will be.

Thursday, January 4

Deaf Culture Controversy

I have found a wonderful group on Yahoo! for parents of children who are deaf and either have been implanted or are pursing implantation. These parents have a wealth of information on cochlear implants, the latest technology, helpful hints for surgery and habilitation. CI Circle has been a great resource for me. The part I love the most is all of the stories about their implanted children and how well they are doing with listening and speech.

The main topic that has been discussed over the last few days has centered around "deaf culture," primarily the negative opinion of those in the deaf community toward cochlear implants, especially in young children. One mother found a deaf culture forum where a posting stated that it "should be illegal for parents to have children implanted." Another was talking about classifying children with cochlear implants as "artificial hearing". The deaf community does not accept those with cochlear implants. The additional argument here is that they are not an accepted member of the hearing world either.

This whole topic got me thinking, and got me really fired up! I wholeheartedly agree that Drew is perfect just the way he is. He has all of his cognitive and physical abilities, and could have a wonderful, happy life without ever hearing. But why should I not take advantage now of the wonderful technology that would allow him to be a part of my hearing world? Why should I wait, giving up the formative years of listening and speech, so that he can make the decision after it is too late? And would I not be doing Drew a disservice by not doing everything I can today to give him all the world has to offer? I do not want to ever think about Drew, ten or eleven years old, signing to me "Why did you choose not to let me hear? Why didn't you have me implanted?"

More importantly, I do not understand those in the deaf community that feel as though they should be able to impose thier will on others. I have found this attitude toward cochlear implants from hearing individuals that work in the field as educators, speech therapists, etc. While I understand that there is concern about the deaf culture dying as a result of cochlear implants, unless you are a hearing parent that has given birth to a deaf child, how can you have such strong views and positions on a topic that has not directly impacted you? Unless you have stood in my shoes, I certainly do not think that you should pass judgement on my decision.

I have been surprised many times along this journey with Drew. I don't think anything is more shocking to me, however, than the negative attitude of so many toward those with cochlear implants. I will not judge you for choosing not to implant your child. I would hope that you would extend me the same grace.

If you have an opinion, please leave a comment.

Wednesday, January 3

Standing Still

We have made a lot of important decisions. Drew now has hearing aids that are showing no signs of helping him hear even the loudest of noises. I feel like we are standing still, simply waiting for enough time to pass so that he can have implant surgery. We have done and learned so much over the last three months about profound hearing loss, cochlear implants, implant mapping, oral deaf education; the list goes on and on. At this point, however, there is not a lot I can do. And that is frustrating.

We have decided that we are going to have Drew bilaterally implanted. We have done a lot of research on this new intervention and feel that it will help Drew develop his listening and speech equivalent to that of his hearing peers. We feel very strongly about making decisions for Drew based on the medical interventions available today, and this new technique is defiantly the best option.

Our research has caused us some concern on balance disorders after implantation. For this reason we have decided that we do not want to have both implants done in one surgery. Optimally, we would like to have the first implant done around eight months of age, and the second about two months later. This is still considered simultaneous implantation, believed to be beneficial for children to learn to use both ears equally, but will allow Drew to adjust his balance with each implant.

We have two upcoming, important appointments. The first is on January 22nd with Dr. Choo in Cincinnati. We are meeting with him for our second CI consult. We are hoping to get a definitive schedule for implantation. My hope is that we will move toward gaining insurance approval for a surgery around May. Our second appointment is for Drew's sedated cat scan on March 14th. Confirming that Drew's cochlea was formed correctly will give us a much better idea of how well Drew will do with his implants. Knowing that Drew's hearing loss was caused by genetic abnormalities gives us and Dr. Choo confidence that his cochlea is fine.

At this point we are simply enjoying each moment with Drew. He is cooing more and more each day, and having conversations with us. He says the cutest "ahhh goooo" and "gahhh gooo" you have ever heard. I think it is so amazing when he "talks" with me - probably because only a few months ago I was scared that he would never talk to me. I am so encouraged to see how well he is doing with his babbling, as it is a tell tale sign of his desire to communicate. Now all I need to do is turn on his ears and we will be chatting in no time.