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        Misa (right) with sisters Kacy and Cammi
16 years
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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.

   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 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.

     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.

     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.