A speech written by my oldest daughter Julia Fruck Age 11 years

Cerebral Palsy

They are committed to hard work; continuous training to improve their skills; and determination each and every day to better their best. Maybe you think I am talking about an individual on the Canadian Olympic Team but actually I am talking about disabled people with cerebral palsy. People with cerebral palsy don’t train for a competition that comes around every four years their competition starts when they wake up in the morning. Every day struggles include holding their tooth brush to brush their teeth. Moving across the room may include a wheelchair, walker or leg braces. Holding a pencil to write their school notes takes concentration because of brain injury or muscle weakness. As an eleven year old girl I have learned so much about cerebral palsy because my little sister Cassie has cerebral palsy. Through her journey of rehabilitation I have made a lot of friends that have disabilities and today I am going to share with you how people with disabilities overcome struggles in their everyday life. I feel each one is deserving of an Olympic Gold Medal.

Cerebral refers to the brains two half’s or hemispheres. Palsy describes any disorder that impairs control of body movement. Cerebral Palsy can range from mild to severe. The symptoms of Cerebral Palsy include: difficulty with walking and balance, difficulty with fine motor skills such as writing or cutting with scissors. Some people have uncontrolled movements or difficulty with speech.

Cerebral palsy is caused from a brain injury. Often the condition happens at birth from the baby having: bleeding in the brain or a difficult delivery where the baby did not get enough oxygen while being born. Cerebral Palsy can not be cured. Symptoms of cerebral palsy can be managed through rehabilitation and therapy. The good news is the brain is able to compensate even if it has extensive damage affects it. Children can find a way to adapt to changes in the way their brain works. They often find ways to do the things they love to do. They just do them in different ways.

My sister has participated in Occupational therapy, physical therapy, speech therapy, orthopedic surgery, casting, Botox and braces for her spastic feet. Cassie attended Ability camp and participated in therapy with 12 other children with cerebral palsy. I was able to visit this camp and met remarkable children who were working on goals to improve their functioning. I witnessed Samuel who was nine improve his walking skills. I heard he has progressed from walker, to two canes to walking with no aides at present. Eva a sweet red headed eight year old with worked on her sitting balance and improved her ability to hold herself up when trying to stand. 12 year old Jessie attended camp numerous times. He is able to ride his bike with no training wheels, stand on risers to sing in the school choir and does competitive Para Olympic swimming to keep him-self strong and improve his muscles.

A great program in our area for children with cerebral palsy is TEAD, therapeutic horse back riding for Disabled. Our family has found the therapeutic benefits of riding a horse have improved Cassie’s symptoms of cerebral palsy. Horse back riding requires balance, physical strength and helps muscle leg weakness. I also noticed the children gain self confidence and enjoy the warm therapeutic bond with the horse.

After meeting these kids you see they have been thought a lot but they are still just like you and me just with a little bit of trouble with things we do everyday.

A speach written by my oldest daughter Julia Fruck Age 11 years

Cerebral Palsy

They are committed to hard work; continuous training to improve their skills; and determination each and every day to better their best. Maybe you think I am talking about an individual on the Canadian Olympic Team but actually I am talking about disabled people with cerebral palsy. People with cerebral palsy don’t train for a competition that comes around every four years their competition starts when they wake up in the morning. Every day struggles include holding their tooth brush to brush their teeth. Moving across the room may include a wheelchair, walker or leg braces. Holding a pencil to write their school notes takes concentration because of brain injury or muscle weakness. As an eleven year old girl I have learned so much about cerebral palsy because my little sister Cassie has cerebral palsy. Through her journey of rehabilitation I have made a lot of friends that have disabilities and today I am going to share with you how people with disabilities overcome struggles in their everyday life. I feel each one is deserving of an Olympic Gold Medal.

Cerebral refers to the brains two half’s or hemispheres. Palsy describes any disorder that impairs control of body movement. Cerebral Palsy can range from mild to severe. The symptoms of Cerebral Palsy include: difficulty with walking and balance, difficulty with fine motor skills such as writing or cutting with scissors. Some people have uncontrolled movements or difficulty with speech.

Cerebral palsy is caused from a brain injury. Often the condition happens at birth from the baby having: bleeding in the brain or a difficult delivery where the baby did not get enough oxygen while being born. Cerebral Palsy can not be cured. Symptoms of cerebral palsy can be managed through rehabilitation and therapy. The good news is the brain is able to compensate even if it has extensive damage affects it. Children can find a way to adapt to changes in the way their brain works. They often find ways to do the things they love to do. They just do them in different ways.

My sister has participated in Occupational therapy, physical therapy, speech therapy, orthopedic surgery, casting, Botox and braces for her spastic feet. Cassie attended Ability camp and participated in therapy with 12 other children with cerebral palsy. I was able to visit this camp and met remarkable children who were working on goals to improve their functioning. I witnessed Samuel who was nine improve his walking skills. I heard he has progressed from walker, to two canes to walking with no aides at present. Eva a sweet red headed eight year old with worked on her sitting balance and improved her ability to hold herself up when trying to stand. 12 year old Jessie attended camp numerous times. He is able to ride his bike with no training wheels, stand on risers to sing in the school choir and does competitive Para Olympic swimming to keep him-self strong and improve his muscles.

A great program in our area for children with cerebral palsy is TEAD, therapeutic horse back riding for Disabled. Our family has found the therapeutic benefits of riding a horse have improved Cassie’s symptoms of cerebral palsy. Horse back riding requires balance, physical strength and helps muscle leg weakness. I also noticed the children gain self confidence and enjoy the warm therapeutic bond with the horse.

After meeting these kids you see they have been thought a lot but they are still just like you and me just with a little bit of trouble with things we do everyday.

A family day together. Getting ready for orthopedic surgery

Left Foot posterior release, med column lengthening and lateral column shortening

The decision about Cassie having orthopedic surgery has been a difficult one. The decision to proceed has involved many people. Cassie and I went to the orthopedic clinic at Mcmaster Children's Hospital and we saw Dr. Sarah Burrows, her resident doctor and the physiotherapist who attends the clinic. We had not seen Dr. Burrows in eight months. Quite quickly into the assessment Dr. Burrows asked me if I was going to let her fix Cassie's foot. We have seen this doctor every year and I half expected her to say see you next year! I listened carefully to all she had to say, asked lots of questions and then went home to talk to Chris. Chris also phoned the doctor to hear about the surgery, what it involved and was active in the decision making process. Dr. Burrows is extremely understanding and kind. In the last year Cassie has had a number of assessments and treatments including the movement lab, trials of botox and video taping she has also done physiotherapy and we have worked hard at home stretching her foot. Dr. Burrow has determined that it is an appropriate time to try to correct the foot position and that the surgery is needed. As parents we had a difficult time deciding because Cassie has had a terrible time with the Botox procedures. Again, our family has pulled together, remained strong and steadfast. Cassie has accepted that she is having surgery and is starting to think about how she will get around in her wheelchiar. Dr. Burrows seems to feel Cassie has matured and nine is a good age and she has been quite reassuring that Cassie can cope. I appreciate all the postive reassurance she has given us. Sharon Carr saw Cassie at the Prothetics and Orthotics department. She adjusted Cassie's foot brace. She used a model of a foot to explain the surgery (very helpful) and she measured and took pictures of Cassie's foot presurgery. Cassie will be non-weight bearing for four weeks on her left foot after her operation. She will stay in Mcmaster Childrens hospital for two nights.
The surgeon will put four pins into her foot and she will have a cast. After the pins are pulled out a new foot brace is made. I am not too sure if Cassie will be able to learn crutches because of her weak hand, but we will for sure have a wheelchair and she is excited about being pushed around (princess Cassie). I am starting to make plans and have phoned her school therapists and have asked the principal for extra EA help. We are anxiously awaiting a surgery date and it looks like it will be March or April. Cassie will have the cast off by summer!!
We are moving forward, accepting what is to come and supporting our beautiful girl through the anxiety she faces with another medical procedure.
God Bless you darling girl. We love you very much and we cant wait to see your foot and hopefully it helps your walking and that you are pleased.

Written by Tylor Bugarjia-Brock Age 14 for an assignment for grade 9

Tylor Bugarija-Brock

There are lots of hero's in life. Movie stars, sports stars, police officers, teachers, firemen and many more but my hero is A nine year old girl and her name is Cassie Fruck. She is my Aunt Kate’s youngest daughter. Cassie lives in Ancaster and we see her and her big sister Julia, Mom and Dad all of the time.

They have a trailer on the lake where my Grama’s trailer is . Cassie loves to ride her bike, play on the swings and in the play ground. She took private swimming lessons last year and over came her big fear of water. Now she jumps in and splashes and laughs. Cassie is friendly to everyone. She says everybody is her friend. She has big brown eyes and she smiles and laughs a lot. She wants to do all of the things I do. I help her with basket ball, jumping on our trampoline and she likes to play baseball with me. I ride my bike around the park and she goes with me. She has a special bike , but she still needs to work hard pedalling to get anywhere.

Cassie wears a brace on her left leg and foot and has a hand brace. She was born with Cerebal palsy. Cass had a bleed in her brain before she was born. After birth they had to do surgery on Cass and put a thing called a shunt in her brain to let off the fluid. On the x-ray we could see the big hole in part of her brain. She got real sick and just about died a couple of months later. They changed the shunt and that saved her. Cassie did not learn to walk for a long time. She has had different casts on and off of her hand and foot She goes to therapy every week and has done this for years. She has to practice everything that I do easily over and over to be able to get it right. She has spent alot of time in hospitols and Doctor’s offices .

The reason Cassie is my hero is she never lets life get to her. She tries hard to do everything and she is happy when she can do even a little bit of what she is trying to do. She never complains that she can not do stuff. She always says she will try harder, no matter how hard she is already trying. Cassie may not grow up to be a doctor or a lawyer but I know Cassie will grow up to do things that help other peoples life be better. That is why my cousin Cassie is my hero.

Tylor in the blue hat holding his younger sister Sarah. All the cousins at Christmas. Cassie to the right holding her youngest cousin Bella. Carly, Julia, Cole and Emily.

A Most Difficult Week but some things to be happy about!

Today was Cassie's school system meeting. IPRC meeting is the correct term. Identification, Placement, Review Committee. The goal of today's meeting was to pursue an Identification of Communication-Learning Disability for Cassie. These identifications are very important in Canada's school system as it allows the school to access more resources, get more funding and it as it reassures myself that the school, teacher, learning resource teacher and EA's understand Cassie special needs and then they are able to provide the best support for Cassie's education.
The Ministry Definition of Learning Disability is as follows:
A learning disorder evident in both academic and social situations that involves one or more of the processes necessary for the proper use of spoken language or the symbols of communication, and that is characterized by a condition that is not primarily the result of impairment of vision, impairment of hearing, physical disability, developmental disability, primary emotional disturbance and cultural differences and results in a significant discrepancy between academic achievement and assessed intellectual ability, with deficits in one or more of the following:-receptive language (listening, reading), language processing(thinking, conceptualizing, integrating), expressive language(talking, spelling, writing); mathematical computations. May be associated with one or more conditions diagnosed as a perceptual handicap: a brain injury minimal brain dysfunction, dyslexia or developmental aphasia.

Cassie met all 5 of the boards criteria and thus was she was given a Communication Learning Disability exceptionality. Cassie already had a physical exceptionality related to her cerebral palsy but the learning disablity exceptionality will now come first as it requires the most amount of resources and time from the school at this point in time. I am glad this meeting is finally done. I feel the meeting went extremely well. Nothing was a surprise to me in todays meeting as we had extensive testing of Cassie done this summer. We were aware of a significant discrepancy between Cassie's abilities and her academic achievement in numerous areas. There had been lots of discussion previously with Mr. Moase and Mrs Holloway and we were aware as to where Cassie is in her educational level. Cassie is learning at a beginning grade 1 level and has low literacy skills, difficulty with working memory and executive functioning and needs various class room strategies to ensure success.
I heard such wonderful comments today about my daughter which is always nice to hear from others:
"Cassie uses great coping mechanisms", "Cassie is very hard working", "Cassie is so pleasant and up beat and social in the classroom and at recess". The Speech and Language Pathologist enjoyed working with Cassie very much and found her caring and thoughtful. The teacher finds her a pleasure and enjoys having her in the classroom. The team expressed surprise at Cassie's love of school with her significant learning problems. They attribute it to a positive family life with supportive parents and big sister and a good school like Fessenden. Apparently, Cassie pushes herself and works hard. She is a people pleaser and wants very much to succeed.
Being blessed with these wonderful qualities and getting the offical exceptionality on her school record, I feel positive that we have some direction to help us progress Cassie in her education. Special education resources will be very helpful as they have been in the past.

Monday Cassie went to Mcmaster hospital for her Botox needles. Cassie had a terrible time. The nurses were unable to start Cassie's IV and she had four IV pokes. She is bruised down her entire arm. Cassie lost it after the third poke. None of the previous strategies we had learned worked. Cassie was given lots of Ativan and was majorally distressed. She would not lay on the bed, she would not put on the heart monitor or the oxygen sat monitor. She screamed and cried and it was very hard on all of us. I am sure the team at Mcmaster felt bad as well. They do not like to see a child in such distress. Dr. Mesterman spoke to the family twice after the procedure offering words of wisdom. We respect this doctor greatly but we have made a family decision to stop Botox procedures. We have witnessed some benefits to getting the needles. However the botox wears off quite quickly and the difficulty these treatments pose for our 9 year old daughter has caused too much strain on the family.
I was able to have a long discussion with Cassie's Physiotherapist. We have given it our best all around effort. As a family we have decieded to listen to our daughter, respect her choices and attempt to build trust again. We have decided we will not force her to comply with treatments at this time. We will revisit with her when she is older the option of Botox treatments. We will turn our attention to some of the other therapies we enjoy doing with our girl. Our focus will be looking for exercises that can assist her to strenghten her tight hand and foot, stretching excercises learned in the past can be utilized more often. Cassie has exercise balls, trampoline and weights in our basement so our committment to spend more time together as a family working on fitness. Thirdly, we will invest our time and energy on literacy skills, maintaining a healthy weight, eating healthy and being active.
Last night Cassie took her first swimming lesson at Ancaster Aquatic Centre. Considering she has a movement and muscle disorder she is working extremely hard to learn how to swim. Her goal is to learn to swim across a pool. I feel good about the decisions we have made. We are an extremely busy family and need to focus our attention on areas we feel give us the best sense of balance in our life. We value our family time.

Cassie with her dad turns 9 years old!! Happy Birthday Kiddo. We love you very much big girl.

Patrick Henry Hughes- Music of Possiblilites

www.youtube.com/watch_popup?v=9xwCG0Ey2Mg

Here is a wonderful truly inspiring story of a young man named Patrick who was born with no eyes and physical disability from birth. His father and him make up a 2 person member of the cardninal marching band. He does not see himself as having disability rather having ability! The father is truly a remarkable man as well. Sent to me from my good friend Wilma. Hope you enjoy

Cassie on Christmas Eve at Oma's. Full of Possibilities and aware of only of her abilities!!

A Long Day at the Spasticity Clinic

I got this wonderful hand out today at the Spasticity Clinic
Even after 8 years with Cassie dealing with Spasticity and me thinking I knew what it was this handout really helped me again. It was produced at Mcmaster Children's hospital and I thought I would summarize the parts I liked

What is the Spasticity Clinic?
The spasticity clinic helps children with spasticity and their families. The clinic has a doctor who is a specialist in caring for children, a physiotherapist, an Occupational therapist and a registered nurse who help children with spasticity.
Spasticity affects:
Motor Skills-some children have problems with walking, sitting, using his or her arms or hand or everyday activities
Comfort-some children have pain when wearing braces, when sitting or sleeping or have problems with skin sores or contracted muscles
Posture-children's positioning can lead to changes to muscles or bones

What is Spasticity?
Spasticity is the medical term that describes muscles that are:
tight-too active and unable to relax
stiff-too much tone or resistance

Everyone has some resistance in his or her muscles. This can be felt when the arms or legs are moved. However, when a person with spasticity moves, the resistance increases.
The faster the arm or leg is moved, the greater the resistance.
The slower the arm or leg is moved, the less resistance

Spasticity increases when a child is working hard, is excited or is in pain, and it decreases when he or she is asleep. ( I see this with my daughter)

Spasticity makes movement difficult. It can make it harder for the child to do daily activities such as sitting, walking, playing, dressing and bathing . If muscles do not move well, they become stiff. Over time, the muscles shorten causing contractures to develop. Contractures are permanent changes in the muscles and joints that can affect your child's care and comfort.
Why does this happen?
During activities such as walking the brain sends many signals to the muscles. It tells some muscles to be active and tells others to relax. Spasticity occurs when the signals telling muscles to relax are blocked. The blockage in Cassie's case was caused by an Intra ventricular hemorrhage resulting in left sided hemiplegia Cerebral Palsy

Spasticity can not be cured, treatments can reduce spasticity and improve children's movement and comfort. Thus the need for all Cassie's physiotherapy, botox, serial casting!!

This really should be my first entry on my blog about my girl!! Sometimes I am slow on the Uptake.

I have sang the praises of the team at the Spasticity clinic before but I wanted to reiterate how much I like and respect this team. I had many questions answered today. I respect the opinion of the doctor very much. So we have a short term plan of care for now. No Serial Casting at this time it was determined it may not benefit Cassie at this time. The positioning of the calcaneous is still a problem. I continue to mobilize and stretch Cassie two times a day and have learned how to do this stretch. Botox has been helpful in the past. Both Cassie and I hoped she would not need Botox we have agreed to go again on January 11, 2009. The doctor went over the Botox treatment again in great detail outlining the complications clearly and informing me again so I could sign the consent. He was very patient answering my questions. I had heard of a case at my hospital where a child received Botox in the neck and reacted. Although the situation is different media articles can make me question and feel nervous for my girl. Dr. Gorter went over all the needles Cassie would get and this time it was explained to me about how they calculate how much a child can have (safe therapeutic doses). I appreciated knowing this. The Team understands Cassie's needle phobia and so the same strategies will be utilized which help Cassie and Mommy cope. The Question of SMO on the Right foot? This was answered today and the answer is no SMO or orthotic. Although her strong foot is slow in the take off it probably would not be corrected with a SMO. That makes two doctors that agree so I respect they gave their best educated guess. Thanks, I wonder why Cassie wore an orthotic on her right foot for eight years already? OH well lets look ahead not back. The results of the Motion Lab were explained and Cassie was given a picture or her hooked up. She looked like ROBO woman and can take it to school to show her friends. The team patiently showed us the results on a computer (after technical difficulties were worked through). The Motion Lab therapist made Cassie's image move forward and backward quickly (computer animation) this broke the ice and made us really smile!!. We need to follow up with Dr. Burrows the Orthopedic Surgeon on January 20th as a tendon transfer surgery may be needed in the more long term planning. Although I am tired. I shared all that was said with my husband and we can relax and have a good Christmas with the girls with a plan of lots to do in the New Year!!

I will leave my next project, how to advocate for the renovation of the dismal room used for after physio therapy. I did send a letter to the president of Mcmaster Children's hospital leading to a visit today from Dr. Mesterman head of the program and a letter to my MPP followed!!!