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My Story In Learning I Have Cerebral Palsy

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.

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."

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.

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.

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.

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.

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.

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.

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.

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.

Taylor in a spica body cast - 12 years old
Trooper-Taylor

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 ...

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.

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.

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.

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.

EasyStand 5000 Stander
EasyStand 5000

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!

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.

Taylor's days will never stop and will continue to progress as our story will always live and continue ...

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'

Mom Holding Child


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