Surgery Date and Lots of Frustration

So we have finally gotten Kairi's first implant surgery date. May 28, 2008 is the official date as of now. We will be constantly contacting the scheduler to try and get an earlier appointment.

So in our opinion, this whole process has been taking far too long. Longer than necessary. Obviously we understand that we need to go to X number of appointments, that is perfectly fine. The problem is that the response time is far too slow. We are always on top of all of our appointments, but the staff that are responsible for scheduling these appointments seem to treat it like they have better and more important things to do. We make multiple calls to try and schedule appointments, which are usually met by the voicemail machine. And when we are finally called back by the scheduler, it can be a week to 2 weeks since we first started calling. And then the appointments are weeks or months out. Initially we had planned to have had the first surgery done in February. We didn't get our first appointment until the end of February. Not sure if this is just our experience with Kaiser or if this is common practice throughout the country. We just get the feeling that the staff doesn't really care.

End of rant.

Kairi's First Pair of Glasses

Well we got her glasses. What does Kairi think about these glasses? She can't stand them for even a second. We are just lucky to have her wear them for a max of 10-15 minutes. Hopefully she doesn't fight too much when she gets her implants. We would have to fight with her over glasses and her CI processor.

First ears.... now eyes

So, Kairi has always been cross eyed since she was born. Her left eye will turn in while the right is straight.

After finally getting an appointment with the ophthalmologists, the Dr told us that Kairi has "Accommodative Esotropia". So from the brochure it is "when the child focuses the eyes to see clearly, the eyes turn inward."

Treatments for this are:
1. Prescription glasses. "Glasses reduce the focusing effort and often straighten the eyes."
2. Patching. The patient will have wear a patch on the strong eye to force the weaker eye to become stronger.
3. Surgery. The surgery will help realign the eye pull the eye into the correct position.

So for now we have ordered a pair of glasses for Kairi. After she wears them for 6 weeks we will have another appointment with the ophthalmologists to see if she needs to be patched.

Choosing a Cochlear Device

Our health service provider, OHSU, gave us two choices when deciding which company we will choose for Kairi's cochlear devices. The differences in the processors are really minimal. Our main areas that we had consider are: compatibility, processor style.

Choice 1: Cochlear Limited
Cochlear has a better reputation for being backward compatible. So if a new processor comes out, then the older users can us the new processor with their old implant.
Cochlear has more accessory option than Advanced Bionics. Accessories meaning colored caps for the magnet and processor.
Cochlear choice of processor type is the Freedom. For small children they use a Babyword version of the Freedom that put the controls off the ear.

Choice 2: Advanced Bionics
Advanced bionics does not have as good of a reputation of backward compatibility as Cochlear does.
Advanced Bionics doesn't have as many accessories as Cochlear does.
Advanced Bionics has two processor types: the Platinum and the Harmony. The Platinum processor is a totally body worn processor. There is nothing on the ear. The Harmony is a standard ear worn processor, similar to the Freedom processor from Cochlear.

The doctors had to obviously be unbiased in this decision. Plus their opinions are only that, opinions. Since they are not users of any of the implants, they really have no say as to which company would have a better product.

For our choice we chose to go with Advanced Bionics. Our health provider told us that we will get 2 processors per ear, so we chose one Platinum and one Harmony processor. We like the Platinum for Kairi while she is in her younger years. There is nothing on the ear, so it will be easier for her to wear. When Kairi grows older, we will switch her to the Harmony processor. The on the ear processor is supposed to be better for her since it is easier for her to do things like talk on the phone.

Note: Image from "Advanced Bionics"

About Kairi

Kairi was named after a video game character from the Kingdom Hearts game (pictured above). Kairi is Japanese for "Ocean Village", but we like to just say it means the Ocean.

Kairi is half vietnamese, one quarter american, and one quarter Korean.

Kairi is our second child. Our first son's name is Tyji and is 3 yrs old. He doesn't have any hearing loss, just a listening problem. haha

Kairi loves her brother even though he always likes to abuse her in some way or another. Tyji has no idea that Kairi can't hear him. He will call her name out over and over again. Soon she will answer.

Kairi loves to eat. She can somehow handle spicy food. She got into the kimchee the other day and loved it.

Kairi will probably be able to walk by the time she gets her first implant. She can take five steps now.

Kairi loves to dance. She will bob her head from side to side. Sometimes she bobs so hard that she tips over.

Kairi has her mom's personality. Always laughing and smiling.

Kairi's First Birthday

Just a video of Kairi enjoying her first birthday cake. Her birthday was on February 26th. It is Haupia cake from Beaverton Bakery if anyone was wondering.

Choices about deafness

When you have a hearing impaired child you have a few choices for how you want them to live their lives. These are the choices that we had to decide between.

Choice 1: Sign Language
Sign language has been the main form of communication for the hearing impaired in the past. This form of communication is good for people who have a child who is not a candidate for cochlear implants. Also, some parents just choose to go this route because they fear surgery or their religion prohibits it. Those who use sign language usually also learn how to read lips. This way they are able to communicate better with people who do not know how to sign.

Choice 2: Cochlear implant
The cochlear implants have become a large part of "treating" hearing loss. Cochlear implants are devices that are embedded into the head and have an external processor. This choice is for people who have severe hearing loss that cannot be cured by normal hearing aids. Cochlear has a great site that explains how all this works.

Choice 3: Hearing aids
Hearing aids work by making everything louder. This would be an optimal solution to hearing loss problems as it is the least expensive and there is no surgery required.

For Kairi, this was a huge decision that we had to make. We knew that we only wanted to resort to sign language as a last resort. We wanted our daughter to be able to hear and communicate with the world in the same way as everyone else. We first tried hearing aids as a solution. Unfortunately the hearing aids did not help. Kairi was still not responding at normal levels.

Fortunately for us, Kairi was a perfect candidate for a cochlear implant. As soon as we knew this, our minds were set. We also knew that we wanted to get her bilateral implants. The only decision we had now was to make a choice between the different cochlear implant brands.

Kairi's First Hearing Aid

NW Regional gave Kairi a loaner pair of hearing aids. We had to pay $75 for the molds that go into her ear, but the rest of the unit was given to us as a loner until we get the cochlear implant.

You are probably wondering why she has hearing aids on when she can't hear anything. We thought the same, but NW Regional told us that it has benefits for Kairi even if she can't hear.

First of all it will get her used to the feeling of having something on her ears so that the transition into cochlear implants will be easier for Kairi to handle. This is a great idea since we have a hard enough time keeping a hat on her let alone 2 hearing aids on her ears.

The second reason was that even though she cannot hear in a normal way, being that she only responded to sounds above 90dB, the aids can actually get Kairi used to the hearing process. The believe that with the aids Kairi will probably be able to hear some sort of muffled of mumbling noises. The purpose here being that the aids are there to teach Kairi how to hear a sound and react in an appropriate way. If you hear a sound on the right, then you turn right. This seems natural to us who can hear, but this was actually a learning process we had as we grew up.

The third reason was that they wanted to keep Kairis hearing muscles active. Kairi was found to have active ear drums and the doctors wanted to make sure that they stayed active and not get weak or become inactive. The main reasoning behind this is that if you don't use a part of your body long enough, your brain will stop wasting energy on that part and it will become weak or inactive after time.

After receiving the hearing aids, we had a hard time getting Kairi to keep them on for more than 5 minutes. But after a few months of constant supervision, she is comfortable keeping them on for hours at a time. It just takes a lot of patience.

Early Intervention

The audiologist referred Kairi to an early intervention program in our area.

"Early Intervention/Early Childhood Special Education (EI/ECSE) provides programs and services for children with disabilities from birth to kindergarten. Behavioral Programs encompass school age programs and staff as well as a mental health team. Related Services encompass programs and staff in the following disciplines: augmentative communication/assistive technology, autism, deaf/hard of hearing, nurses, physical therapy, occupational therapy, speech/language, & vision."

NW Regional was assigned to Kairi. The adviser comes to our home once a week to monitor Kairi's physical and mental development. Basically she is making sure that Kairi is developing in a normal way other than her hearing impairment. The adviser reports her findings to NW Regional and to the Washington County school district. The main purpose of these visits is to inform the school district and prepare us, the parents, for Kairi's entry into school.

Results of Genetic Testing

The Audiologist referred Kairi to have genetic testing done to try to help determine the cause of he hearing loss. The genetic testing will be looking for the presence of connexin 26 and connexin 30 genes.

The meeting consisted of an interview with the parents to obtain family medical history. Neither one of us has had any hearing loss in our family. We have another son and he can hear perfectly fine.

The second part of the testing is a blood sample that will test for the connexin genes. A few weeks after the testing, we received word that Kairi did have mutations in the connexin 26 genes.

So for those who are not biology majors, let me break it down for you.

Every person is made up of genes. These genes come in pairs. So for hair color you may have a pair of brown genes, BB for example. If you have one brown and one blond then you may have BD. If you have one of each, what color hair will you have? That depends on the dominant gene. Whichever is the dominant gene in this case will win. So lets say that blond is dominant. So BD will create a person that is blond.

So for connexin 26, Kairi has CC. That means that both of us, her parents, have 1 connexin gene each. Because if either of us had both, then we would also have hearing loss.

Our chances of having a child with hearing loss are as follows. CC, CN, NN. So we have a 1 in 3 chance of having a child with hearing loss.

The good news about Kairi having connexin 26 is that it makes Kairi a candidate for a cochlear implant. This is just an initial assessment since many other factors will come into play along the line. But, usually patients who have connexin related hearing loss don't have any physical abnormalities related to the ear. This is what makes them a good candidate.