Kairi has started to speak a few words.
- Bye Bye
- DaDa
- MaMa
- All Gone
- All Done
She can also sign a few.
- Come
- All gone
- More
Thursday, December 4, 2008
Second Activation
Kairi's second implant was activated a few days ago. She really didn't like having another magnet on her head. She fought with it even when it was turned off. Fortunately she is fine with it now.
Obviously we are not looking for any real change at this point. We will just watch to see how she localizes sound in the future.
Obviously we are not looking for any real change at this point. We will just watch to see how she localizes sound in the future.
Left Ear Implant Surgery
Kairi received her second CI implant. The surgery was a success with only a minor complication. The part of her skull that needed to be ground down to seat the implant had to be ground down pretty far for the implant to sit flush. The surgeon had to expose a small amount of Dura. We were told this area would fill back in with bone over time and would not be a problem or point of concern. Unfortunately we had to spend the night at the hospital for observation purposes.Kairi is doing well. Back to her normal self.
Wednesday, September 24, 2008
Surgery #2 Coming Soon
Kairi has her second Cochlear Implant surgery scheduled for Nov 19. I will post new videos and pictures at that time.
What does Kairi Understand?
So Kairi can hear... but what can she understand?
Kairi understands:
- Kiss (she will give you a kiss)
- Bye Bye (she will wave and sometimes say Bye Bye)
- Give it to... (she will give what is in her hands)
- Kairi (she will turn to her name)
- No (she will pause or stop what she is doing.... sometimes)
- Blanket (she will get her blanket)
- Shoes (she will get her shoes)
Kairi understands:
- Kiss (she will give you a kiss)
- Bye Bye (she will wave and sometimes say Bye Bye)
- Give it to... (she will give what is in her hands)
- Kairi (she will turn to her name)
- No (she will pause or stop what she is doing.... sometimes)
- Blanket (she will get her blanket)
- Shoes (she will get her shoes)
Thursday, July 31, 2008
First words
So the past few weeks Kairi has picked up new sounds to add to her vocabulary.
What Kairi can say now:
Ma Ma
Ba Ba
Da Da
This is amazing progress since she has been activated for only a few months.
What Kairi can say now:
Ma Ma
Ba Ba
Da Da
This is amazing progress since she has been activated for only a few months.
Wednesday, July 9, 2008
Enchanted Forrest for Tyji's Birthday
For Kairi's brother Tyji, we went to the Enchanted Forrest in Salem. Tyji and Kairi both had lots of fun. This was Kairi's first experience riding on a ferris wheel and a kiddy train. She seemed to enjoy it.
July 4th
This is the first year that Kairi was able to hear the music and enjoy the fireworks with her new hearing. We went to Happy Valley Park in Portland Oregon. We all had a lot of fun. Kairi showed us that she knew how to hear the fireworks. Too bad she fell asleep before the show actually started. Maybe next year.
One Month and Hearing
It has been over a month since the surgery and close to a month since the activation. Kairi is showing sign of hearing.
The last appointment at the audiologist, Kairi was put in the sound booth. The first word that the audi spoke into the microphone... Kairi turned her head in all directions looking for the source. :-)
What can she hear?
- She is afraid of the vacuum cleaner now. So she can hear that.
- She can hear firecrackers. She turns to the noise and points at the lights.
- She dances to music.
There are a lot of instances where she demonstrates that she can hear something. Every week that goes by we notice it more and more.
The last appointment at the audiologist, Kairi was put in the sound booth. The first word that the audi spoke into the microphone... Kairi turned her head in all directions looking for the source. :-)
What can she hear?
- She is afraid of the vacuum cleaner now. So she can hear that.
- She can hear firecrackers. She turns to the noise and points at the lights.
- She dances to music.
There are a lot of instances where she demonstrates that she can hear something. Every week that goes by we notice it more and more.
Wednesday, June 25, 2008
Kairi's Activation
Kairi was Activated on June 13th.
The audiologist activated Kairi with the HiRes Fidelity 120 programming.
The initial response, was no visible response. The computer told us that she was hearing and the Dr explained that this is what they were expecting. They want her to gradually work her way up and progress slowly at first. I recorded a video, which you can use mostly to listen to the Audiologist explaining things. It may be helpful for you.
Our EI adviser joined us for this visit.
The audiologist activated Kairi with the HiRes Fidelity 120 programming.
The initial response, was no visible response. The computer told us that she was hearing and the Dr explained that this is what they were expecting. They want her to gradually work her way up and progress slowly at first. I recorded a video, which you can use mostly to listen to the Audiologist explaining things. It may be helpful for you.
Our EI adviser joined us for this visit.
Friday, May 30, 2008
New Study Promotes Bilateral Implants
Bilateral cochlear implants: A case when 2 are definitely superior to 1
INDIANAPOLIS -- A study of cochlear implant patients seen by Indiana
University School of Medicine physicians is the first research to show
evidence that cochlear implants in both ears significantly improves quality
of life in patients with profound hearing loss and that the cost of the
second implant is offset by its benefits.
The study, which appears in the May issue of the journal Otolaryngology- Head
and Neck Surgery, found that improvements in factors that contribute to
quality of life including such critical abilities as hearing in noisy
environments, focusing on conversations, and speaking at an appropriate
volume resulted when cochlear devices were implanted in both ears.
This study may have a significant impact for profoundly deaf individuals who
hope to have their health insurance providers pay for bilateral rather than
the standard single cochlear implant. The study authors found the benefits
of the second implant outweighed the added cost of the second device.
"We didn't know that cognitive skills and emotional issues would so
significantly improve with the implantation of a second cochlear device. In
addition to the physiological improvements we saw in patients who had
bilateral implants, we found that patients were able to function better in
noisy environments and definitely felt better about themselves," said senior
study author Richard Miyamoto, M.D., Arilla Spence DeVault Professor and
chairman of the Department of Otolaryngology- Head and Neck Surgery.
Dr. Miyamoto is the immediate past president of the American Academy of
Otolaryngology- Head and Neck Surgery. First author of the study is Bradford
G. Bichey, M.D., MPH, a former research fellow and resident at the IU School
of Medicine and currently an otolaryngologist in Marion, Ind.
"Profoundly deaf individuals who were born with hearing, their families,
physicians, and health insurance providers now have the data they need,"
said Dr. Miyamoto. "There is definite improvement after one implant and
there is a significant added bump in sound and speech perception after the
second implant. Emotional well being improves. And we found a favorable cost
utility analysis. Our hope is that with these findings more health insurance
companies will cover the cost of bilateral implants and bring a superior
quality of life to a large number of individuals. "
Approximately 1.4 million American are deaf in both ears and experience
significant impairment in communication with the hearing world according to
the study authors. The IU School of Medicine cochlear program is one of the
largest in the country. IU physicians have implanted more than 1,500
cochlear devices over the past quarter century at Indiana University
Hospital and Riley Hospital for Children.
###
This study was funded by the IU School of Medicine's Department of
Otolaryngology- Head and Neck Surgery.
INDIANAPOLIS -- A study of cochlear implant patients seen by Indiana
University School of Medicine physicians is the first research to show
evidence that cochlear implants in both ears significantly improves quality
of life in patients with profound hearing loss and that the cost of the
second implant is offset by its benefits.
The study, which appears in the May issue of the journal Otolaryngology- Head
and Neck Surgery, found that improvements in factors that contribute to
quality of life including such critical abilities as hearing in noisy
environments, focusing on conversations, and speaking at an appropriate
volume resulted when cochlear devices were implanted in both ears.
This study may have a significant impact for profoundly deaf individuals who
hope to have their health insurance providers pay for bilateral rather than
the standard single cochlear implant. The study authors found the benefits
of the second implant outweighed the added cost of the second device.
"We didn't know that cognitive skills and emotional issues would so
significantly improve with the implantation of a second cochlear device. In
addition to the physiological improvements we saw in patients who had
bilateral implants, we found that patients were able to function better in
noisy environments and definitely felt better about themselves," said senior
study author Richard Miyamoto, M.D., Arilla Spence DeVault Professor and
chairman of the Department of Otolaryngology- Head and Neck Surgery.
Dr. Miyamoto is the immediate past president of the American Academy of
Otolaryngology- Head and Neck Surgery. First author of the study is Bradford
G. Bichey, M.D., MPH, a former research fellow and resident at the IU School
of Medicine and currently an otolaryngologist in Marion, Ind.
"Profoundly deaf individuals who were born with hearing, their families,
physicians, and health insurance providers now have the data they need,"
said Dr. Miyamoto. "There is definite improvement after one implant and
there is a significant added bump in sound and speech perception after the
second implant. Emotional well being improves. And we found a favorable cost
utility analysis. Our hope is that with these findings more health insurance
companies will cover the cost of bilateral implants and bring a superior
quality of life to a large number of individuals. "
Approximately 1.4 million American are deaf in both ears and experience
significant impairment in communication with the hearing world according to
the study authors. The IU School of Medicine cochlear program is one of the
largest in the country. IU physicians have implanted more than 1,500
cochlear devices over the past quarter century at Indiana University
Hospital and Riley Hospital for Children.
###
This study was funded by the IU School of Medicine's Department of
Otolaryngology- Head and Neck Surgery.
Thursday, May 29, 2008
Surgery Day
We checked into Doernbecher's Children Hospital at 6:30AM on May 28, 2008. Kairi's surgery was set for 7:30AM. The staff was extremely friendly and professional there, which made a lot of our anxieties go away. At about 7:30 Kairi went in for her surgery. We gave her a few kisses and she went off to the OR.
To pass the time we wandered around the hospital and had some breakfast. At 9:00 we returned to the waiting room and waited for half an hour more. Kairi's surgeon appeared with a smile on his face. "Perfect" was the only word I can remember him saying. Surgery was perfect and the CI was working correctly.
Kairi was a bit cranky after she woke up from the surgery, but a little morphine got her to relax. Kairi spent most of the day going in and out of sleep. We were out of the hospital at around Noon.
After we got home Kairi did very well and just kept on sleeping. She ate small amounts of food and had a lot of fluids before sleeping again.On day two Kairi is almost back to her normal self. She is smiling, eating, and trying to play. We opened the bandage today to check on the cut and we were surprised how small it was. We should be able to remove the bandage by tomorrow.
The hard part is done now. We are just looking foreward to her activation and to her hearing.
Wednesday, May 21, 2008
1 Week Til Surgery
There is only 1 week left to go. All we have to do now is wait and make sure Kairi doesn't get sick.
We went to the zoo over the weekend as the last outing prior to the surgery date. Kairi had a blast.
Wednesday, March 26, 2008
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.
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.
Tuesday, March 18, 2008
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.
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"
Friday, March 14, 2008
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.
Thursday, March 13, 2008
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.
Wednesday, March 12, 2008
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.
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.
Wednesday, March 5, 2008
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.
"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.
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.
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