Audrena's Ears
We are Randy and Carri. Audrena, our third child, has bilateral
profound hearing loss. Currently we are traveling the path of her
hearing journey as she has received her cochlear implants, and we are
continuing to expand her speech and language. We started this blog to
keep family and friends updated on what is happening during Audrena's
hearing journey, and we have hopes that someday it will help another
family facing cochlear implant surgery.
March 10, 2015
Happy 4th Birthday, Audrena!
Today is Audrena's 4th birthday. It never ceases to amaze me how far we
have come in the past 3 years. On Audrena's 1st birthday, we still did
not know for certain that she was profoundly deaf. We were really just
beginning her hearing journey. In the past 3 years, she has endured
everal surgeries, countless hours of programming appointments, Aural
Habilitation (speech/listening therapy) appointments, physical therapy,
doctor visits, and most recently full day preschool. As parents, we
have supported her through all of the same plus 19 1/2 hours of IEP
meetings. (Yes, I am keeping track. Is there a medal at the end?)
And while we have come this far, there are still so many more years of
this marathon ahead of us. Audrena has made leaps and bounds of
progress this school year, but her articulation is still bad. It's
pretty difficult for new people to understand her, so we continue to
work on it. For example, she is now much better with the beginning and
ending sounds that she used to leave off, and we finally have a /k/!
The /g/ is still not there. We can see that she knows it is supposed to
made in the back, and that it is different than the /d/. She just has
not figured it out yet. But the progress is not fast enough for me some
days. I will fully admit that it's hard for me because I wish the
hearing loss was the only obstacle. Plus, Reyana and Kelton talked so
early and so clearly that it's just what I am used to. I know we'll get
there, though, because we have some really dedicated people on
Audrena's team.
Aside from articulation, there has been progress with language, but
there are still areas we need to work on like retelling stories,
answering questions, including articles like "a" and "the," and not
mixing up works like "I want marshmallow pink," instead of "I want the
pink marshmallow." Again, we will get there. It's a marathon, not a
print, right?
If I remind myself of the broad picture, the miracles are crystal
clear. We went from not knowing that Audrena was deaf at her 1st
birthday to having a pretty normal 4 year old who can communicate, even
if it's not yet perfect. Her teachers tell us what we already
knew...that Audrena is a smart little girl that will go places. Ok, I
am boasting. We love all of our kids, and they are ALL going places in
life. But she IS a smart little girl. She is an adorable, happy,
healthy, spunky, stubborn little redhead. Some days that headstrong
little girl makes me crazy, but at the end of the day I wouldn't have
it any other way. I wouldn't trade our baby, or the hearing loss, for
anything in the world. This journey has been hard and has tested us
time and again, but it has been fantastic in ways we never could have
imagined. We have learned so much about ourselves, our children, and
our family as a whole. It has brought us closer and showed us to
appreciate the small things.
We have big dreams for Audrena. Wouldn't it be fantastic if she grew up
to become a cochlear implant surgeon? Or the first woman president? No
matter what she chooses to do in life, we are confident that she will
do it with that unmatched red-headed determination and with that
trademark one-sided double dimple of a smile to win everyone over. Look
out world! Here she comes!
And about this birthday? This year she partied with Chuck E. Cheese and
told me which color flower she wanted to eat off of her birthday cake
(the birthday child chooses the first piece). This birthday she can
actually sing Happy Birthday to herself with a better sense of tune
than I have! This birthday we gave her a bike because we know that,
even with an imperfect vestibular system, she will learn to ride in
order to keep up with Reyana and Kelton because that's the way she
rolls.
Happy 4th Birthday, Audrena! You are a truly amazing gift from God.
[image1.JPG]
Grandma and Grandpa gave Audrena this dress for her birthday. She told
me she was wearing her pink and orange dress (check out the pink and
orange balloons on it) and that she can twirl in it. :)
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January 30, 2015
Waardenburg Syndrome?
From the beginning of our journey, I started reading about the genetic
causes of hearing loss. I read about the characteristics of Waardenburg
Syndrome, and I started to ask questions. We were always told no, that
Audrena would have unique facial features if that were the case.
Since the Usher Syndrome mix-up, we have been seeing a really great
ophthalmologist at University of Iowa Hospitals & Clinics. We see this
doctor periodically to keep up with Audrena's eyeglass prescription and
also because she works in genetics as well. She has been working hard
to determine what caused the unique characteristics that Audrena has:
heterochromia (her eyes are 2 different shades of blue), hearing loss,
inner ear/vestibular structure abnormalities, etc. Over the summer, she
asked if we had ever heard of Waardenburg Syndrome. Randy explained
that yes, we had always questioned it because heterochromia and a
lighter forelock runs on my (Carri's) side of the family. She explained
that because I have the lighter color forelock and because of Audrena's
characteristics, she would like to send a sample to be tested for
Waardenburg Syndrome. Type II does not have the distinct facial
features, and only roughly 20% of people with Type II have hearing
loss. However, she said it does often come with vestibular structure
changes. Of course, we agreed to the testing.
The test results showed one variation on each of two different
Waardenburg Syndrome genes. However, those variations were ruled "not
likely." Because the testing is relatively new in the world of
genetics, the doctor asked us to do further testing. She will now be
comparing samples from me and other members of my family who have the
traits to try to prove her theory that we have a mild variation of
Waardenburg Syndrome. If we do, the good news is that it does not
change anything for Audrena. It is not progressive, and nothing else
will develop. It is what it is. For the rest of us, it could be very
informative, especially as the younger generation starts to think about
having children.
However, if she does not prove anything with the testing, then we still
do not have an answer. I trust this doctor, though, and I think she may
be correct. I guess time will tell, but given what we went through
thinking that Audrena might have Usher Syndrome I will take Waardenburg
Syndrome, or even the unknown. In the meantime, we will continue to see
this doctor for Audrena's glasses. It's a long drive, but it is worth
it for the quality of care!
School Update
Today is the 100th day of school. I can't believe how fast those 100
days went! Reyana loves her teacher and is really enjoying 2nd grade.
Kelton has matured so much in Kindergarten, and his teacher is
fantastic. It has been a great year for everyone, especially Audrena.
We have seen a huge growth with Audrena this year. It seems we ("we"
meaning her IEP team as well) have found a good combination of services
this year with full day school, her SLP-A, and her speech therapy. I
know we have a long way to go to get her caught up, but I also can't
believe the amount of progress she has made this year. She is asking
more questions, and more importantly, she is answering questions and
taking turns in conversation so much better. Her vocabulary has
expanded, and she is talking so much more. The average length of
utterances has also gone from 3-4 to more like 4-6, and occasionally
even 7 words.
Audrena has developed quite the personality this year. She keeps us all
laughing, and she is the typical bossy little sister to Reyana and
Kelton. Even when we are in our van on the interstate, she hears what
Reyana and Kelton are doing behind her and tattles on them every chance
he gets. Kelton was taking pictures with my iPhone one day as we drove
down the interstate, and she made sure to tell us when she heard the
camera click! Like every other child out there right now, she loves all
things Frozen, and she tries to sing along with the songs even when she
doesn't know all the words.
In school, they have been working on typical preschool things like
letters, numbers, shapes, and colors. She can identify almost half of
the letters randomly, she writes her name, and she knows her shapes and
colors. I lost track of how far she can count, but I think she gets to
around 15 before she starts missing numbers.
I still worry that she will not be caught up by Kindergarten, but I can
afely say that I feel much better about where we are than I did over
the summer. I can finally see the pace starting to pick up. We will
continue to keep the ball rolling and even speed it up.
Recently in the sound booth, Audrena tested from 5-25 dB. There was one
frequency where she was at 5 dB, and one where she was at 25 dB.
Overall, she was hovering consistently in the 15 dB area. We are so
impressed with her programming! Audrena has started to tell us when her
batteries are low, or when she needs more toupee tape on her Naida
processors. She asks for her "water ears" at bath time (the Neptune
processors). And she has become a good little lip reader. We use very
little sign language at this point, and yet if she is in bed and
doesn't have her processors on, she still often answers our questions
appropriately.
The miracle of cochlear implants never ceases to amaze us! Even with
its limitations, the technology has provided Audrena with so much more
in life than we ever dreamed possible when we started this journey. We
knew that some access to sound would be better than none at all, but
the results have far exceeded our expectations!
August 22, 2014
First Day of Preschool 2014
Audrena started preschool today. Her IEP team has a big year planned
for her, and hopefully it will bring great things. Audrena will attend
the "regular" preschool in the morning, then speech, lunch, recess, and
Early Childhood preschool in the afternoon. She has a wonderful SLP-A
(Speech-Language Pathologist's Assistant) who will be with her during
the school day this year. We are so excited for all of the language
learning and wonderful progress that she should make this school year!
We are very thankful for a good school district with dedicated
professionals as well.
This morning we arrived at school, took the obligatory "first day"
picture in front of the school's sign, and barged into the SLP's
office. Audrena loves her, and that's the first place she wants to go
when she gets to school, whether she should be going to speech or not.
So the SLP walked with us to take big brother Kelton to his
kindergarten classroom and then on to the preschool room. Audrena saw
her Early Childhood teacher and thought she should go right into that
classroom. We had to explain that she has a new classroom in the
morning. Once we were in the door, she found the ramp and a toy car,
gave me a dismissive wave and a quick, "Bye bye!" That was it. She
wouldn't even turn toward me for a quick picture. The SLP-A offered to
take a picture later and send it to me, but I had what I really
needed...a happy girl on her first day of school.
[photo.JPG]
July 25, 2014
Our Summer Vacation
This year we were able to attend the summer parent workshop at The Moog
Center for Deaf Education. What an amazing place! We learned so much,
and we totally recommend attending if you have a deaf or
hard-of-hearing child! Totally. I will warn you, though, by the time
the workshop is over you will want to pack your belongings and move to
St. Louis. They are that good.
While we were there, they did some evaluations on Audrena. The results
were not quite what we had hoped to see, but we are thankful that we
were able to bring the report back and make some positive changes on
Audrena's IEP that should help her make good progress. We have a good
chool district to work with, and we still hope to meet the goal of
having Audrena caught up by kindergarten.
In order to make the stars align for us to be able to attend the
workshop, we needed someone to care for Reyana and Kelton. Thank God
for family. My sister was able to go with us to St. Louis so that we
could make a vacation out of it. She cared for the big kids while we
attended the workshop from 9:00-3:00 each day. They swam in the pool
and relaxed in the hotel suite. In our free time, we were able to go to
the St. Louis Zoo, The Magic House Children's Museum, and The Gateway
Arch. It was a great family vacation, and I can't thank my sister
enough for making it possible! Here are just a few photos I have
readily available on my phone.
[photo1.JPG]
[photo2.JPG]
People have always told us that Audrena would be the first deaf woman
president. Maybe they were right....
[photo3.JPG]
[photo4.JPG]
My sister stayed at the bottom with Audrena while we took Reyana and
Kelton up inside of The Gateway Arch. Here we are waiting for the "car"
to pick us up.
[photo5.JPG]
We were assigned to "car" 3 on the way up.
Siblings of Children with Hearing Loss
Here is a good article about how to best support the siblings of
children with hearing loss. It's something we struggle with in our
household. We always feel like Reyana and Kelton give up a lot for
Audrena, so we make a conscious effort to do things that involve only
them. It's hard. They don't always understand that the therapists are
there to help Audrena learn to talk because it looks like play to them.
The physical therapy time looks like a fun obstacle course, and they
want to participate. Well, Reyana understands a little more because she
is the oldest, so she does things like reading bedtime stories to
Audrena, knowing on a 7-year-old level that she is helping her little
ister. But there are plenty of times when it's just plain unfair that
Labels: news articles
February 21, 2014
South Dakota Senate Bill 122
We have been busy lately. Work, children, Girl Scout cookie sales, and
politics have been consuming our time. Yes, politics. I've been busy
mailing letters and e-mailing our legislators. Wednesday morning I got
up at 4:00 am and drove the 4 hours to Pierre to testify in front of
the Senate Health and Human Services Committee. Then I drove the 4
hours back home. So what was worth 8 hours on the road for such a short
time? Children. Particularly children with hearing loss. You see,
Senate Bill 122 is an act to require insurance companies to cover
audiology services, hearing equipment, and associated therapy for
children with hearing loss in South Dakota. What is more worthwhile
than giving children a chance to hear and speak to the best of their
ability, regardless of whether or not their parents have the financial
means to purchase hearing aids and speech therapy? We are fighting. And
we are not finished yet. There is more work ahead. But with the support
of our fellow South Dakotans we may just succeed. I am asking all South
Dakota readers to please contact their legislators (click the link to
find yours) and ask for a YES vote on SB122. Pass the message on to
your friends. Act quickly because the bill will be heard Monday morning
again. Let's give South Dakota's deaf and hard-of-hearing children the
chance to speak because our children are the future voice of South
Dakota.
P.S. If you listen to the audio on the website, you might just hear me
testify. Just know that I was not at my best. I was trying very hard to
hold back the tears, so I needed to take deep breaths, and I cut my
peech short to give the many other parents behind me a chance to speak
as well. We had a great turnout of supporters!
~ Carri
Posted by Randy and Carri 2 comments:
Labels: South Dakota SB122
January 30, 2014
Current Happenings on Audrena's Hearing Journey
We've been wading through the preschool evaluations, and we're almost
finished. Currently, we are planning for Audrena to start preschool on
March 11th, the day after her 3rd birthday. This whole process has been
a new adjustment for us. Just when we think we're getting used to
things!
Audrena had programming last week. She had been putting her hands over
her ears at loud sounds, so we knew something had changed. It worried
us a bit because it happened pretty suddenly and shortly after a bump
to the head. As it turns out, her impedances were fine, so she just
needed to have the programming tweaked a bit. However, we were
urprised when one of her Naida processors gave Dr. M. issues during
programming. Then we were even more surprised when the Neptune for the
opposite ear caused the programming software to crash. So Advanced
Bionics replaced both processors, and when they receive the others they
will do some additional testing to see if they can figure out what
happened, whether it was a static shock, moisture, or some other issue.
It seems that we go through a lot of parts, but we are always pleased
with AB's service. We also understand that we are dealing with the
newest technology, and that doesn't come without some bugs.
Here is a recent photo of Audrena with her Naida processors. If anyone
has any fantastic suggestions for us about how to keep them on, we
would love to hear them! Her glasses cause the processors to slide off
her ears if they are not secured. Plus, we don't want to take the
chance of losing them. We are currently using toupe tape, which works,
but her hair gets caught in it. She loses chunks of hair, and some days
I think it's a miracle she has any left around her ears. Also, it makes
her ears look a little funny because of how the tape sticks. I am going
to order some huggies to see if that works. It seems like if there was
a product that attached the processors to her glasses they would stay
in place better. Maybe I should invent something!
[1544298_10203296169143631_1014929833_n.jpg]
I will leave you with some big news. It's big in our eyes anyway. We
are going to attend The Moog Center's Parent Education Workshop in
June! We are SO excited! After much debating about whether I could get
away from work, whether Randy could get away from work, and what to do
with our other children, we decided to just book the trip! My sister
plans to go with us, and we'll take the big kids along. Since we will
have evenings open to do other things, it will be a family vacation! If
one or the other of us is unable to go, we'll adjust our plans and one
of us will still attend. We feel like this is going to be a great
learning experience, and Audrena will get some fantastic one-on-one
time with The Moog Center's personnel!
Posted by Randy and Carri 1 comment:
Derrick Coleman Surprises HOH Girls
Below is a link to a great piece by ABC News about Derrick Coleman, a
deaf Seattle Seahawks player, who surprised two hard-of-hearing (HOH)
fans and their family with tickets to the Superbowl. I'm not big on
football, but I just have one thing to say. Pretty cool, Derrick.
Pretty cool.
http://abcnews.go.com/blogs/headlines/2014/01/seahawks-derrick-coleman-
urprises-hearing-impaired-girls/
November 21, 2013
A Little Update
In the next few weeks, Audrena will be evaluated as part of the
transition from Birth to 3 to the school district for services. I am
interested to see what the evaluation brings. She is putting 3-4 words
together. However, I feel like her vocabulary is still lagging behind a
bit, and she is still leaving out the beginning and ending consonants
more often than not. For example, one time she might pronounce
"puppies" crystal clear, and the next time it might be "uppies." "On"
and "off" both lack the endings more times than not. We are working on
it, and we've seen some improvement. Our current SLP through Birth to 3
has done a great job with Audrena, and we are seeing some really nice
progress.
We have been using the Naida processors nearly exclusively now. It's
new technology, and there have been some bugs. We kept losing mic
protectors from one of her processors almost daily, and before long we
noticed that the mic just wasn't crisp and clear like the other. So we
witched back to the Neptunes and sent the Naida in for replacement.
The replacement had issues of its own, giving random red lights or
orange lights. The orange light would ordinarily mean the battery was
low, but we found that it didn't matter what battery we put in, it
would still show that the battery was low. So again we had it replaced.
Audrena is hard on cords, so we have had to replace those a few times
as well. We went through that with the Neptune cords, too. She is just
rough with them. That's why it is SO important to be very conscious of
your child's cochlear implant equipment. We constantly monitor things
because if she is not getting good quality sound, she can't catch up as
quickly with her speech and language.
The Naida processors can use the T-mic 2. We have heard they are
generally not recommended for small children because there is no good
way to monitor whether they are working. However, our Audiologist
wanted us to use the T-mic 2 because it delivers the sound into the
opening of the ear, where it naturally would be heard. Also, studies
how better outcomes with T-mic usage than without. As closely as we
monitor Audrena's equipment, that concerned us because we couldn't
really check the T-mic's function, yet we wanted her to have the best
possible listening opportunity. Dr. M. explained that she would be
programming it to use 50% T-mic and 50% processor mic. That would
really function as a 100%/100% arrangement because if the T-mic were to
fail, Audrena would still get the sound through the processor mic. She
could monitor the T-mic via booth testing outcomes by switching off the
processor mic during testing and then testing again with it on. So we
agreed to try it. We also think we have figured out on our own how to
test the T-mic with it being programmed this way. When we do listening
checks, we simply tightly cover the processor mic with our fingertip,
and we can hear the sound only through the T-mic. We know the sound is
coming into the T-mic because if you get close enough and the air from
your mouth hits the mic, you can hear it just like wind. I'm not sure
if that's in any way reliable, but it seems to be working for us.
We feel like Audrena is getting better sound with the Naidas. It may or
may not be coincidence, but she has had a speech & language explosion
ince we have started using them. One thing we haven't quite figured
out is how to keep them on without using toupe tape. Her glasses get in
the way, so they don't sit perfectly on her ear. Tape seems to be the
only solution, and it works well, although we sort of hate it. Her hair
eems to get stuck in it no matter how careful we are. If anyone has a
olution, I would love to hear it!
Labels: Advanced Bionics, Naida
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