|
|
Misa
(right) with sisters Kacy and Cammi
16 years
California
email
Misa's family
Misa is now 15 years old and we have been through a lot. I
must tell you the details of the early years are a little fuzzy now, especially
some of the sequence, but I’ll try to recall the main events. In
general, I would describe Misa as a very determined child who has gotten
as far as she has out of her stubbornness to achieve.
After I wrote this thing I realized that it is very long.
Please feel free to call or contact us with any questions or information.
We are very open to sharing our experience and are always open to trying
new activities for Misa.
MEDICAL
From birth Misa was a very alert and happy baby.
I remember vividly that her eyes were wide open in the delivery room and
she turned to the sound of my voice and Ronnie, my husband’s voice.
From birth we should have realized that she was very floppy but we didn’t
know any better and people around us were afraid to say anything.
She is the oldest grandchild on both sides of the family and no one seemed
to notice.
When Misa was around 6 months old I started questioning
the pediatrician about her not rolling over or sitting up. He told
me to give it another month and then we would see. In another month
nothing happened, so he referred us to a physical therapist for an evaluation
and also the neurologist. The neurologist did a simple exam and determined
that she had no reflexes. He sent us for an EEG and an MRI. (Boy
was that an experience. Here I had a 9 month old and they sedated
her and put her in the tube with a paper cup on her chest. Then they
told me to watch the cup and make sure it keeps going up and down.)
The end result was an immature cerebellum. The neurologist’s response
to us was that there are cases with more damage and fewer or no symptoms
and cases of less damage with more symptoms. (The symptoms being
low muscle tone, poor coordination and poor balance.) So we were
sent away with no real information. The physical therapist
recommended ongoing therapy that was provided in our home through state
funding.
At some point a basic chromosome study
was done as well as a High Risk Banding Chromosome Study. All of
the tests that were done came back negative. She also had a muscle
biopsy done that only revealed immature muscle fibers. Around
age 3 ½ , Misa was referred to an endocrinologist for growth concerns.
At the time she weighed 24 pounds and was 78.5 cm in height. She
tested borderline for growth hormone deficiency and was put on growth hormone
on a trial basis.
Coincidental to starting growth hormone, Misa
had an appointment a few weeks later with her ophthalmologist (she had
strabismus surgery at 2 years old to correct some crossing of her eyes),
who pointed out to me that she had some cataracts maybe 10% opacified,
but nothing to be concerned about. Within about a week of that appointment
we noticed that Misa’s pupils looked completely white. The ophthalmologist
was truly astonished when he saw her and had never seen cataracts form
that quickly. The consensus of the doctors was that the growth hormone
exacerbated the growth of the cataracts, so growth hormone was stopped.
Surgery had to be done to remove the cataracts. At the time
of her surgeries, there was no alternative method of replacing the lens
for children, so Misa has functioned since then with contact lenses.
Since the lenses are for a fixed middle distance, she also has reading
glasses.
The appearance of the cataracts seems to have
been the piece of the puzzle that was missing to diagnose Misa. Previous
to her diagnosis, it had been suggested that she had some type of Cerebral
Palsy, or possibly Prader-Willi Syndrome. The Cedar-Sinai Genetics
Team actually gave us the diagnosis, but was at the time, not very helpful
with information. I remember Ronnie being a little upset that they
seemed so happy to have come up with the diagnosis, while we were in agony
knowing that Misa’s future was uncertain and they had no answers for us.
Since then Dr. Bill Wilcox has been wonderful in providing us with the
latest information and it is comforting to know that someone is working
on the location of the gene and treatment is possible in the future.
Misa later went back on growth hormone and has grown
at a slow but steady rate. When she was off growth hormone her growth
slowed significantly – like ½-1 inch per year. She is now
about 60 pounds and 4 feet, 3 inches tall.
Misa crawled every place for years it seems
like. She started using a walker around 3 I think. She had
forearm crutches for many years, but only started using them full time
around age 13. The use of the crutches full time greatly improved
her overall strength and balance. I believe that the walker provided
her a lot of stability and the crutches made her utilize her trunk muscles
to achieve that balance. It was a big decision to let go of that
walker, especially at school where it provided a natural barrier around
her from getting bumped. Misa is able to walk for short distances
independently and doesn’t use anything at home other than furniture and
the walls occasionally.
EDUCATION
Education has been a challenge and Misa has pioneered
“full inclusion” in Torrance, California. She started in the Orthopedically
Handicapped Program (county run, incorporating several cities) at 2 years
old and stayed in it until the middle of First Grade. Some poor mainstreaming
experiences and lack of fit of a Special Education program led us to look
for another solution for Misa. I looked at the Special Ed. Classes
available in Torrance and decided that Misa didn’t fit there but could
probably fit in a regular class with some help. So mid year we moved
her to our neighborhood elementary school. With the help of the resource
teacher and some accommodations to shorten assignments, Misa did well all
the way through 5th grade. Curiously I went to a full-inclusion
conference held in the area and one of the speakers was the full-inclusion
specialist for Torrance – Someone I had never met. She was very surprised
to hear that Misa had been in the system for so long and that she had never
heard of her. Apparently, Misa’s inclusion had gone so smoothly with the
staff at our school that no one had ever sought outside help.
In 6th grade Misa went to Middle school and I went to
look at the two schools close to our house. I also looked at the
special ed. classes offered as I thought that this may be a placement for
Misa in the near future. Misa started in all regular ed. classes
but eventually needed to be put in the special day class for the English/Language
Arts block. She does not have a Physical Education class and I don’t
care for the Adapted PE program that is offered locally.
In 7th grade, Misa also did science and social studies
in the special day class, but stayed in regular education for math.
In 8th grade, Misa did science and social studies in a regular ed class
that was team taught by the special ed teachers. She
ended up in special ed math because a new policy in the district was for
all 8th graders to take Algebra 1 (ready or not). For her own reasons,
Misa chose to remain in 8th grade another year and is taking Algebra in
a 2 year program. She is not taking science and social studies over,
but is using her extra periods to work in the office, take Home Economics,
and tutor other special ed kids in Math.
It sounds as though education has been easy but
it has been many hours of homework, re-teaching ideas that she didn’t get
in the classroom (or wasn’t taught). We have been very fortunate
to have teachers and a variety of other professionals that have worked
with us to make this all possible.
SOCIAL and LANGUAGE
Misa struggled with speech early and had hearing
tests that came out negative for any hearing loss. She drooled for
what seemed like years, but has slowly but surely come along with both
her speech and language skills. She is highly intelligible and has
actually been discharged from speech at school.
In the younger years Misa did very well
playing with others and had a best friend that did everything with us.
Around 5th grade, it became apparent that Misa was not maturing socially
at the rate of her peers and the friendship didn’t last.
The social scene is probably my biggest concern
at this time. She knows a lot of people but does not have any one
that I would truly call a good friend. Fortunately, we have lots
of family around that seems to make the situation a little better.
It is difficult having a younger sibling (18months younger) who is socially
very active.
RECREATION
As a family we are very active in judo.
Not the easiest sport for someone like Misa, but I think she has gained
strength and we have a huge extended family from it. We have tried
a large variety of other activities for Misa. The one she has liked
best is a VIP Soccer league that is run through AYSO (American Youth Soccer
Organization). We tried Special Olympics Softball, but that
turned out to be too difficult for Misa. (We also learned that Special
Olympics wasn’t meant for the physically handicapped, but for the mentally
handicapped) Misa has been in a sewing class and had swimming lessons
at a handicapped pool. She made some really nice clothes,
but has decided not to continue with the classes. She is quite the
swimmer – a modified breast stroke- and I am currently exploring some Special
Olympic swimming programs in the area.
Her sister, Cammi, is very active softball player
and we spend a lot of time at games, especially since I am the team mom
and her dad helps coach. Misa has learned how to score for the games
so that she can be more involved.
Misa enjoys Nintendo and it is something that she has
practiced enough that she can play with most of the kids. It is not
the best way to spend her time but at least it is something that she can
do with the other kids on a fairly even playing field.
|
