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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 no longer has an aide. He is so independent now. I think it is soooo great! Taylor gets his own tray of lunch with of course some assistance as to someone pushing his wheelchair. He pushes open many of the school doors for himself upon wheeling. Sometimes some of them are very hard to do and in need of assistance, but he feels so grown up now because he is able to do so many things more independently. Taylor will be having a surgery coming up to both feet on April 2, 2003 as they are severely deformed and need to be reconstructed as he is walking on the sides of his feet as they 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!

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 I 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 maneuver a walker or even a wheelchair through the narrow doorframes. The bathroom is not accessible in where he can wash at a sink or use the toilet as he can not maneuver in a tight space or even be able to get into a bath independently.

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 nose. 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.

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, I requested that 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 home-bound schooled for 8th Grade school year in order to work on these strengths in walking. 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 home-bound 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.

Wonderful news was received in regards to Taylor's 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 20, 2007 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 has come a long way in overcoming so many negative obstacles that were a part of our lives during an abusive life that Taylor and I are no longer a part of. Since of December 2007, Taylor and I have been free from such negativity and abusive surrounding(s) which interfered in Taylor freely becoming an independent and positive young man to be able to excel in reaching his goals to success. Since then, Taylor has been able to release his passions and grow without the fear of negativity to maintain straight A's with a 4.0 GPA, surpass his grade level in reading and writing skills as he is at college level for being in the 10th grade which was already determined at 9th grade level. He has been able to freely become independent in his daily living skills, walk so much more with the aid of his walker and to be able to make responsible decisions. Taylor has been more positive regarding his walking daily as to the importance of maintaining the muscle use in his legs however, the left leg does not want to cooperate. Almost straight, but not there yet. Taylor works so very hard to get it there with frustration. The left leg has a big discrepancy of up to 3" in shortness due to his past knee surgery.

Time sure does pass by quickly as my little guy is not so little these days as he is now a Junior in the eleventh grade in high school. Taylor is no longer on a home-bound program as he has started with an on-line curriculum high school education alternative. Home-bound school was not as well as expected as an alternative, however, the possibilities could of been due to the instructor we were assigned as Taylor did not learn anything new other than teaching the teacher writing skills and completing the teacher and other students assignments for them. The struggle in math continued as the teacher did not include math as a learning tool as she felt it was not necessary for him to even struggle to learn. Therefore, with this, I looked into other options as this home-bound program was not effective and the teacher was far from being compassionate in teaching and used the students disability as to her advantage. Very unfortunate. Taylor's present school education program is based within a Charter School online textbook curriculum 4 days a week and attends class campus one day a week for 4 hours. Wonderful alternative in learning responsibilities, organization and independent skills as this program very much gives room in advancing in your child's growth for putting one foot in front of the other.

Taylor has completed his Community College dual credit program with having earned three credits for College and a half a credit for high school. Taylor is so proud of himself in his accomplishment as Mom is proud!

September 2011. Officially A Senior! That's My Trooper! Then off to University to pursue studies in the field of Psychology.

Well, that time has come again. Due to no end in attempting to have Taylor's left leg to reposition straight in aggressive stretching, no success. Therefore, September 20th, at Summerlin Hospital for surgery. Taylor will be having procedures; repositioning in the left knee as it is misaligned with tendon release behind the knee; right and left foot in repositioning due to being in tilted position inward as he is walking on the outer side of his feet; pins to be place in securing the feet and left knee. Six to eights weeks in a full left leg cast and short cast to the right foot.

September 22, 2011 as I opened the blinds this morning, not only was there a ray of sunshine, but a ray of STRENGTH! A powerful ray! It was reflecting off Taylor's inner and outer aura. This was not invisible; this is the quality of a young man that has proven to be a 'TROOPER' time, time and again. With his spoonfuls of medicine, I along side have spoonful of blessings. Many best wishes were sent Taylor's way in the postcard, cards, gifts & surprises. What a joy it was to see that glow off of my Hero's face. Taylor is grateful with the many in his corner. Surgery was 6 1/2 hrs, with having had started physical therapy in GREAT sessions. It is in the plan in leaving the hospital on Friday, however, I am not hopeful as his oxygen level continues to be low and not able to go to the bathroom. It is possible the catheter will be back, HELLO!

September 24, 2011, I wish to extend apologies to the shake up you may have experienced in the powerful roars in the early hours. Lion-ness 'TROOPER'. Due to Taylor not able to urinate, he had to have a one-time catheter ordeal as an ultrasound showed an extremely full bladder with his belly extended, along with having a bladder infection as per blood work. Six hours thereafter, Taylor was still not able to go on his own, so, Mr Hello, the catheter was put back for a few days as to the concern to his kidneys. I have never heard my young man roar as he did. Painful as well for Mom to see/hear such, however, with all that Taylor endures, he continues in charming all the nurses with his smiling face and humor! That's My Young Man! We are now on the therapy, rehabilitation floor for the rest of his stay. Taylor is tired from three hours of therapy today. He will need to stay for a few more days through to next week as he needs to urinate on his own, He is still on oxygen as to his levels are still low. Therapy is in place to assist in his upper body only as he is not permitted to use the legs and left hip. Today was a good day for Smilin!

October 4, 2011, do I know where we are? CHECK. Do I know my name? CHECK. Do I know what day it is? CHECK. Mom Is Still Smilin, so is our Patient. As I take a deep breathe :) Mom and Son do share alike. however, sharing the same hospital is far too much. Yup. I walked down to the ER and checked in as to a Diverticulitis attack. The pain went on for two days, therefore, had to get some TLC for 5 1/2 hours with morphine, special tasty drink for Catscan, nausea med and woooo, that icky feeling of flying. Back upstairs I went with pain med/antibiotic RX. Talk about convenience. As for our patient Taylor, he is doing well. PT/OT continues with great efforts from Taylor 3 hrs a day. I thought his upper strength was already built as steel, But, WoW! We have a champ here! Mr Hello (Catheter) comes out today for an attempt to see if he goes on his own. Cast was cut open on left leg due to leakage, however, all is well, catheter leaked .. UCKY! Plan to stay in hospital longer than anticipated as I checked into to the option given of a Nursing facility, however, no. Mom will surely with confidence continue his care at home without hesitation. With the necessity equipment at hand, Mom will be 100% A Okay! Eighteen years experience here! Smiling! Taylor's outlook is happy as ALWAYS. Holding strong on his strength, however, he does have his down days.

Day seventeen, October 6, 2011, we are informed that on day eighteen will be HOMEWARD -- As Madea praises "Hallelujer". Our beds are screaming, the 48" flat screen needs warming up, our very own toilet seats are miserable without our tushes, fridge is lonely and oh, how we crave for the "Silencio" .. need I say more !?! LoL! Last few days were just running the course with Taylor's catheter removed with success, continued OT/PT, awaiting doctor to come change the casts and final prep for equipment needed for the home. We will be having a nurse and PT/OT coming to the home for the remainder of Taylor's days in casts, however, I may pass up on the nurse as I wish to continue the care on my own. Just very set in my ways in my Mother role :-) The nurse wants to come by directly the following day. WRONG! No! Nada! No Way! Phone off! Talk to you Monday .. tehe! Taylor is making his rounds in giving well wishes to his room mates on the floor. Mom n Son a Smilin !

*** Friday October 7, 2011 - - Home Sweet Home***

A Day in BELIEVING! Taylor's second follow up with Orthopedic doctor was a GLORIOUS one. Casts are off, a MARVEL sight it was. The correction to Taylor's left knee is remarkable as it is straighter than straight! As to both feet, they are re-positioned beautifully. A well inspired hug to the doctor was given. It has been a challenging, long haul for us both, however, the both us being side by side, created enough STRENGTH to get by and mostly, the LOVE we share NEVER defeats us. Taylor's coming days will now involve therapy to re-gain strength to his legs and feet. Most importantly, keeping those muscles active in preventing in tightening up again. My FOREVER HERO Taylor is such a TROOPER. Not a day goes by whether it is good or bad, his HEART-PRINTS and NEVER ending SMILES truly make you BELIEVE! Okay Mom, time to relieve some of that emotional, stressful demon that wants to run the show! This calls for a pot of homemade chicken soup.

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: 'HEROES come in ALL sizes'

Mom Holding Child


To continue .... My Progress Report


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