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My Story In Learning I Have Cerebral Palsy
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Taylor is in Grade 5 and does most things as all his peers and is growing and going strong!
He is doing really well in school and taking steps each day to reach for new stars. Taylor has
many kids at school that just love to help him a lot. He uses his walker to get to some classes
and he does not have an aide anymore. He is so independent now. I think it is soooo great! Taylor
gets his own tray of lunch with of course someone to help him by pushing his wheelchair. He pushes
open many of the school doors for himself. Sometimes some of them are very hard to do and he will
need help, but he feels so grown up now because he can do so many things independently. Taylor will
be having a surgery coming up to both his feet on April 2, 2003 as they are severely deformed and
will need to be reconstructed as this will improve his walking as well in not walking on the
sides of his feet as they do turn outward and he also does not have an arch.
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Taylor's surgery on April 2, 2003 to both his feet was a success. They were aligned beautifully
and look wonderful! We are so very Blessed with the hands of a Loving Dr. to whom Taylor has had
since 1998. "An Angel In Disguise."
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Due to Taylor's surgery in April, he has now had a setback. He has lost a lot of his balance and has quite a
bit of sensitivity to his feet with quite a bit fear he endures in using his legs for some reason. I assume
it has to do with the loss of his balance coordination. So it has been much more difficult on us as we have
to aide him more since he is not as independent as he use to be in using his walker to go to the restroom and
so fourth. Taylor get's so very, very frustrated and discouraged in using his walker around the house as for
the door to his bedroom and bathroom are just not wide enough to easily fit his walker through and the
bathroom has very cramped quarters for him to be able move his walker around as it was not well thought out
upon getting the house. It is a very big struggle for him. I know Taylor will flex back as always.
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Taylor is now a 6th grader in Jr. High and pretty much uses his wheelchair all day at
school as it is a different pace with no given time for his transferring or walking. With
classes changing and busy hallways, there is no possible way or time for Taylor to do so
as he is still very slow and hesitant. Whenever Taylor has strengthened his legs and
bypassed the fear in transferring and being in crowds, he ends up with a set back due to
a surgery. On a positive note, he very much continues in being much more independent at
school and is doing so well academically as he maintains a GPA of a 3.5.
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August 9, 2005, Taylor had a routine visit with his orthopedic specialist and were given
unexpected news. In a series of x-rays that were taken of Taylor's lower body, the left side of
his hip showed that it was entirely out of the socket. With Taylor's Cerebral Palsy, he does
have severe areas where his muscles tighten up and are overworked. Due to the contraction of the
muscles, this possibly wore out the hip socket. Taylor needed to be admitted ASAP and the left side
of his hip will need to be reconstructed and secured back into the socket. As I take a deep sigh.
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Taylor's surgery on August 24, 2005 went very well. I am very pleased along with his
Dr. in the outcome results and so very hopeful in the coming days as to the outcome in the
progress that this is going to greatly correct much of Taylor's walking capabilities.
One of Taylor's legs were longer than the other and now with this hip correction, this will
correct this situation as well. Now both legs will be the same length and will very much
improve Taylor's walking. Again, being hopeful.
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Taylor's surgery was 4 1/2 hours. His left hip was entirely out of its socket by about 2 inches
due to his Cerebral Palsy with the tightening of the muscles had over time moved the bone out of
the hip socket. The left leg by the joint area that connects to the hip, is where a piece was cut
out from the top on a tilt to the left and then a part of the hip was cut to fill what space was
left in the leg. Then the left leg hip was placed into the socket and screwed in place along with
a metal plate.
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Taylor is in a body cast. Full left leg, half right leg from the knee, up both sides of the ribs/hips
and completely around the back. He will be in this cast until his 6 weeks are up on Sept 26.
Taylor will then return to the hospital and be put to sleep for about an hour so they can remove
the cast and inject Taylor with a dye as they will take an x-ray to check on his hips to make
sure all is well. They will cast him again, however, this time right above the knee on both legs,
much lower down the back and in front. This time, he will also be able to put weight on his legs.
Taylor will be in that cast for another 6 weeks. Upon the removal of that cast, Taylor will be back
to work on walking and strengthening his legs. The hardware in his hips will more than likely
stay in for the rest of his life, however, if there are no complications with the hardware in
having to remove it or if Taylor wishes to have it removed when he is older.
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Taylor was in the hospital for 3 nights, 4 days. He had problems with his breathing each day as
he had to be on oxygen and just made it on the fourth day to be able to come home. He was to
first have a chest x-ray to see if his all was okay before being discharged. All was clear.
His first week at home was a tough one. Being in pain, discomfort, severe nose bleeds 2-3 daily,
not eating or drinking much, vomiting - most times with blood from the nose bleeds and gagging.
It was decided he needed to go to the hospital emergency room. Upon their findings, he had a
virus and was put on antibiotics and given a special ointment for his noise. He has been doing
great since then. Pain wise, he is doing incredibly well. He is more uncomfortable on his bottom
as to being in any pain and has much discomfort and itch from the cast around the ribs and back.
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The unexpected news of Taylor needing the hip surgery was so terribly off in timing as he was
going to be starting back to school of Grade 7 on August 29th and Taylor took that so hard as
he very much misses his classmates, teachers and school surroundings; however, he did not keep
that frown turned down too long upon hearing he will be home schooled for about two months.
My little man could have went without the summer off because he was so devastated at the end of
the school year as he did not even want school to be over or to being away from all his teachers
and classmates. His routine is set and he is so secure in his place at school. Being an only
child and not having any friends in his life, school is all he has and fills that void. It is
also a blessing and a rarity to hear that your child loves school.
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Taylor in a spica body cast - 12 years old
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He is such a Trooper!! Through his trials, he roars from time to time alright...however,
my little man continues on with one of his personal traits ... his high spirits. His early
morning voice shines to the Broadway Musical ' Wicked.' He surfs the web daily and is working
on a project about his summer vacation. He is so very eager to get started with homebound-school
and with fulfilling some more of his dreams. There will never be an end to the colors of Taylor's
rainbow. And proudly, I will always follow his path to the end ...
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Taylor had his body cast removed in November. He was not to put any weight on his legs for a
few weeks. All looked well upon his x-ray. Taylor is all set to return to school at the beginning
of the New Year of January 2006.
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Taylor has had a rough few months this time around with school. We are now into May 2006
and it has been an emotional, stressful rollercoaster. A few kids at school wish to label
Taylor as the school mentally retarded kid along with the PE Adaptive teacher is very abusive
verbally. Well, a stop to this was immediate as this was seriously taking an effect on Taylor.
He would come home angry, crying, feeling sick to his stomach, not sleeping at night, very
much disliking school and has effected his academics. This was not like my Trooper. After
meeting with the school, Taylor was pulled out of PE immediately, and took a medical form to
Taylor's doctor to have signed that PE is NOT beneficial for Taylor for the coming year of
Grade 8 since he will be at the same school for another year. Since Taylor has been pulled
out of PE, he has snapped back to his happy nature.
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As for Taylor's walking, there has been no progress whatsoever. This is the all time setback ever!
His legs and feet are so sensitive and his balance is so poor. He gets tired so easily and feels pain
upon walking. This past surgery very much has set him back quite a bit. I have started Taylor
on doing 10 full laps in our front room 3x a day with his walker as well as working with him
on stretching exercises in a fun way together.
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Taylor has had his routine visit with his orthopedic doctor August 2006. His legs and knees are
not looking well. His hamstring muscles are just too tight and his knees are not positioned correctly.
Due to having to sit at school for six hours in his wheelchair, his body and leg muscles are being
prevented from being stretched. He is unable to maintain a good posture in being in the wheelchair
and not able to build on strength and balance. At this point, the doctor felt best that Taylor was to
be homebound schooled for 8th Grade school year in order to work on these strengths, in walking and in
the use of an EasyStand 5000. If Taylor continues to sit in a school environment for the six hours in
his wheelchair, he will have to be casted every two weeks to have his legs positioned straight in order
to have the hamstring muscles stretched. However, there is no guarantee as to outcome results in the stretching
to the hamstring muscles of aiding in this process. The positive side to Taylor being homebound is; is
hoping to prevent any further future surgeries. He will have to step it up with the walking and start to sit
on the floor upon TV times as to the sofa where he will need to stretch out his legs upon pushing down
on the knees as much as he can tolerate to straighten out. It has been decided to all concerned in
Taylor's best interest, that he continue homebound schooling for the rest of his school years to benefit
in fulltime home physical therapy along side his academics.
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EasyStand 5000 Stander
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The stander arrived and Taylor is taking some time as to adapting to it. Homebound school program is
coming along very well for Taylor. His grades maintain A's and B's, however, he strugggles in math.
Math never was my greatest strengths either. That is his one and only subject that is his pressure point.
Wonderful news was received in regards to his 8th Grade State Proficiency Writing Examination. Taylor's
composite Writing Score is 18.0 where based on the score, his achievement level is: Exceeds Standard.
Taylor's accomplishment in his score, achieved him
in being the student throughout his entire school of eighth graders, to being the only second highest score
student in the proficiency writing exam. I can not be any prouder! That's My Trooper!
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Now for the downside news. Taylor's visit back to his orthopedic doctor, as expected, he will have to
have surgery which is scheduled for June 20th as there was no improvement to his legs. The hamstring
muscles will be lengthened to both legs and the knee bones are longer than normal in where they interfere
in the bending of his legs and straightening. So, he will have a distal femoral osteotomy for
extension to the knees and realignment. The knee bones will be cut to shorten along with realigning.
Two pins per knee will be inserted in the size of 4 and 6 inches and Taylor will be in full leg casting
for up to 2 months. How much does your child have to endure in any trial of pain. Big sigh! Well, in holding
strength together for Taylor, that path may be on a curve for now, but it will straighten out. When that
time comes, the brightest beam will lead us back to that positive light.
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Taylor's days will never stop and will continue to progress
as our story will always live and continue ...
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May every day of your life bring you fresh hopes for tomorrow
--because hope gives all of us our reason for trying.
Forever and Always:
'Even little ones can be HEROES'
To continue ....
My Progress Report
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Trooper-Taylor's Special World
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