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!!!

A Visit to the Movement Laboratory

Amovement assessment allows Cassie's doctors, therapists and orthotists to look closely at how her muscles and joints work when Cassie is moving. This information helps the team make decisions about exercises, braces and surgery. It also shows the team how movement changes over time due to growth or treatment.

The movement lab is located in Mcmaster University in the Communications Research Building. Today when Cassie and I arrived we had trouble getting into the University area as there is a strike happening at Mcmaster and police are at all the entrances. After waiting in a lineup I phoned the therapist from the movement lab who came out to the entrance of the University and asked the security to let us through.

Cassie had to wear a swimsuit for the test. She was hooked up to various wires and electrodes. Cassie was patient and well behaved during the hook up.
Cassie had a full assessment which includes a collection of EMG and/or Kinematic and Kinetic info and a video. The test took one and a half hours.

Here is a summary of the tests completed:

EMG, or electromyography, measures the electrical activity of the muscles. Small electrodes are placed on the skin over the muscles being studied. The information goes into a computer as the muscles contract. The information the the computer screen can tell when the muscles are turned on or turned off.
Kinematic measurements allow us to study the angles of the limbs and joints during movement. Reflective markers are placed on different parts of the body with stickers. Eight camera with infrared lights take pictures of the markers during movement. The information is relayed to a computer which analyzes the information and produces graphs of the joint movements.
Kinetics-Force plates on the floor provide information about the forces the muscles generate as well as the effects of gravity. A physical assessment of muscle strength, range of motion and spasticity may also be done.

A Lovely Family Walk turns into a Painful Trip for Cassie

Yesterday we took our young beagle pup to the Lease-free park in Ancaster Meadowlands. Chris and I had to walk on either side of Cassie, sheltering her as she is deathly afraid of dogs. Charlie the Beagle pup loves to run and quickly made a pack with four large dogs and their owners. Every time a big dog ran up to Cassie Chris, Julia and I sheltered Cassie. We spoke to the big dogs, petted them and talked soothing to Cassie to show her she would be okay. We told her how to use a firm voice to say down if she did not want them too close. Cassie is almost 9 years old but we learned some insightful information after going through psycho educational developmental testing this summer. Cassie developmentally tests around the age 5 years 3 months to 6 years 4 month. Finding this out helped me understand and put into perspective Cassie's recent behaviors at home. Chris and I were both getting frustrated with her bedtime routines, not sleeping through the night, crying spells and unrealistic fears. We went to a Social worker and have some behavioral strategies that seem to be putting us all at ease. I have found that using strategies that work for 5-6 year olds work wonderfully for behavior modification for Cassie. It does not matter what her chronological age is right now it matters what she understands and responds too within her own life.
The family had a lovely walk and we met three other families and chatted on a cold, windy Autumn evening, we were all smiling, laughing and having a wonderful time. It was comical watching the groups of dogs play. After a long walk in the tall grass, we headed up a path towards a paved walk way and while talking and holding my hand Cassie's weak leg gave out and she went down hard on gravel and pavement. Right away her strong knee started bleeding and we saw a chunk of flesh missing. Cassie who does not react to pain well screamed and cried and Chris had to carry her all 90 pounds up the hill. We stopped at a Shoppers Drug mart and bought polysporin and band aids. Cassie reacted poorly to application of soothing medicine and had more freak outs about band aids. Julia worked hard to encourage her and assisted us to band aid her up. Cassie is really sore and bruised today. I actually verbalized to Cassie that it sometimes sucks to have Cerebral Palsy. Muscles let you down and co-ordination is affected. With big tears she readily agreed. Cassie's AFO is too small already in only 9 months. The Assisted Device program only pays for AFO's for children once a year. She will have to make do until almost a year. Her left foot is rolling over again on her and her balance is affected. She is going to go to a Mobility Clinic at Mcmaster Children's hospital and have a walking assessment with her braces on and off. Her Orthotist will make something permanently into her shoe (a lift) to even her out with her almost 2 cm leg length discrepancy. Then we will follow up with a Physiatrist Dr. Gorter. Dr. Gorter is my favorite of all Cassie's doctors (Dr. O'Toole ranked really high on my list as well). This Physiatrist thinks allot like I do. How quickly the evening changed. I understand that injury is a part of life for children (especially ones with with mobility problems) but Julia, Chris and I hate to see Cassie hurt. However, we can only be there to support, love apply band aids and kiss away the tears.

The Red Carpet Event

Chris took the girls to the Mall and they participated in a fun event to fashion back to school clothes. They got their hair and makeup done and had a fun time. Now they need lots of votes to win a shopping spree!!


Vote for Julia F Ancaster Age 7-11
or Cassie F ancaster Age 7-11
or the Sisters Both under the BFF category

http://www.myredcarpetexperience.com/LimeRidge/
Thanks for the votes!!
Red Carpet Experience
Saturday, September 26, 2009 to Sunday, September 27, 2009

You rocked the Red Carpet now rock the vote!


On September 26th and 27th, young fashionistas from all over Hamilton came to Lime Ridge sporting their hottest back to school fashions. As the paparazzi snapped away, they strutted their stuff on the Red Carpet and gave their best diva poses. The participants really rocked the red carpet, and now it is your turn to rock the vote!

Click here to vote for the "Best Pose" in each category.

Voting runs from 8:00 am September 29th until midnight October 12th. Winners will be announced on October 13th.

Prizes include a $250 Cadillac Fairview shop! card ™ and a $100 gift card from H&M. The winners will be invited to a special shopping day, when a Personal Stylist will help them select even more cool outfits with the gift cards won!

The shopping spree will be videotaped and posted on this website for all to enjoy.

Click here for full contest details, including a full list of contest categories and prizes. Thank you to all of the participating retailers!

Written for St John's Evangelical Lutheran Church newsletter

Cassie’s experience of Attending Ability camp

I was asked to describe the experience of attending Ability camp. Cassie’s sponsorship to attend this program came from St John’s church council, the Entire Congregation of St John’s and Irmgard Fruck Cassie’s beloved Oma. I am thrilled to have the wonderful opportunity to share the unique experience of Ability camp with Cassie’s church family in our church newsletter. Also to allow the congregation to see where the contributions were used and how they benefited a young girl with cerebral palsy. At first glance the total cost of the camp seemed high at 5, 300 dollars (not including costs of living away from home for five weeks). After experiencing all the camp has to offer I do not feel the costs are that high although almost every child at the camp had to be sponsored financially to allow the children to go. Here is a short description of the experience.
Ability camp is not a fancy camp but it truly a place where miracles happen and faith grows. I spent five weeks with Cassie in a full program where 12 families of children with cerebral palsy lived in close quarters sharing three bathrooms and one kitchen! The friendships happen easily as children bond, parents share experiences and therapists work tirelessly assisting children to meet their goals. I personally went through a powerful healing process in relation to my daughter’s brain injury as I watched her interact and grow over the five weeks. I connected with some very special children and their families a very valuable experience. To tell you a little bit about the program Cassie had a full day of passive exercises, lying program, standing program, sitting program and individual program. The Hungarian approach to physiotherapy involves very little equipment. The rooms had floor space and carpet. The only other things in the room were stools, chairs, ladders and wood. The toys used were wooden dowels and beanbags. The Hungarian Conductors (Physiotherapists) were terrific with the children and so knowledgeable about cerebral palsy. Cassie’s class had four children 12 year old Jessie from Edmonton AB, 10 year old Dre from Michigan, 9 year old Samuel from California and 8 year old Cassie from Hamilton On. All four children are ambulatory but have muscle weakness and mobility issues related to their brain injuries. Cassie fit in well right away and did not mind being the only girl in her class. Each day there was a lot of laughter; jokes and the amazing thing about children are they motivate each other to improve. Cassie was extremely tired at the end of the day. She had stiffness and sore muscles but always maintained her smile!
The real miracle within the walls of Ability camp comes in the friendships made, the chance for parents and siblings to talk about their experiences of raising a child with a disability. The people we met understand the unique experience of rehabilitation and seeing smiles on a child’s face when they accomplish something they never thought they could. All of Cassie’s goals were met and Ability camp met all our expectations.
A quick summary of what Cassie gained was her overall body strength improved; she is weight bearing better on her left leg. Cassie improved in advanced walking tasks, she is using her left hand much more and better in every situation, she can raise her left arm higher than before, her grasping improved in her left hand, her left foot and hand became much more flexible. The program can continue to be done in the child’s own home. The child learns to be independent in areas of dressing, bathing and toileting and the independence makes the child’s self esteem skyrocket. Thank you to our church family for your financial contribution and sponsoring our girl for this valuable therapy.
God Bless
Kathy Fruck

Two Days of Neuropsychological Assessment

Cassie has had an intraventricular hemorrhage, hydrocephalus and multiple shunt surgeries making her learning disability more complex and thus she was referred for neuropsychological assessment at Chedoke Hospital. A highly specialized psychometrist named Bertha Parish did the assessment. I was very proud of Cassie, the test was over four hours long (broken up into two days). Cassie sat through a battery of tests to measure cognitive development, problem solving, attention, memory, language, spatial ability, sensory functioning and motor development. As a parent I felt Cassie gave an excellent effort. Bertha has a wonderul way with children, she uses a soft teacher-like voice and she gives constant positive encouragement. The assessor's style appealed to Cassie and she tried her best and I was extremely proud of her effort. The test should help us clarify Cassie's learning style. I am so thankful she was tested as it will assist with her Individualized Learning Plan and hopefully help her in school.

Neuropsychological assessment takes a "picture" of the many thinking and learning parts of the brain, including intellectual development, memory, attentional control, problem-solving, behaviour and many other areas.

I feel very releived that we will be getting a formal diagnosis of Cassie's learning disability. The report will help us better understand her strengths and weaknesses. The report can be given to her medical team, her learning resource teacher and it will be interpreted and input given to her teachers for better planning for grade 3.

Cassie taking a break between assessments. Having a quick snack at Chedoke Hospital waiting for Bertha Parish to continue with her testing.

I spent another day meeting a wonderful Educator Angeline Sarabura who runs the Gregory School for Exceptional Learning a school right here in my home town of Ancaster. The school first opened in September 2002 by the founder, Angeline Sarabura, who wanted an appropriate educational setting for her son. Angeline believes children with special needs require special programming. The Gregory School tries to individualize the development, delivery and evaluation of curriculum so that a child will achieve success. They offer small class sizes, specialized programming and therapeutic interventions making sure the learning is enjoyable and rewarding. I commend this exceptional teacher and innovative educator. I wish I could make it happen for Cassie to attend this private school. A year of attendance is around 17, 000 dollars. I just cant see how I could ever afford this type of program. I wanted desperately to make it happen but got overwhelmed and gave up easily. I am staying optimistic that after having Cassie tested I can find some help for her within the public school system. Othersise I have still not ruled out sending Cassie next year to summer school at the Gregory school (at a much reduced rate). If I don't see some real progress particularly in learning how to read I will have to knuckle down and explore better options. Cassie is making continual slow steady progress and I hope her latest assessment guides me towards the right decision.

Overcoming Fears and Getting Comfortable in the Water

Cassie spent a week in Dunnville with Gramma and Grampa and did a week of swimming lessons with a most wonderful instructor named Josh. Cassie went every day for one hour to Josh's home pool. The class had two terrific boys named Brent and Nick. Josh is a skilled experienced instructor. He spent time getting Cassie comfortable in the water. He helped her overcome her fears by keeping a funny upbeat class where praise is continually offered for bravery. Swimming takes a lot of physical co-ordination and for a young girl with cerebral palsy. Josh used a combination of play time in the water while teaching skills and pool safety. Cassie who is reluctant in water progressed quickly because Josh builds trust with the children and keeps a positive encouraging voice while teaching skills. The smiles on the children's faces, the giggles at Josh's jokes and the children's eagerness to please Josh is a true testament to his skills as an instructor.
Josh and his three young students Brent, Nick and Cassie. All three children were at slightly different levels and Josh beautifully managed each child. I think having these nice boys in Cassie's class was terrific as Cassie watched them and tried to do what they were doing. Josh runs the lessons at his country home which is also a chicken farm near Canboro, Ontario. Our good friends Tammy and Ed told us about these lessons. Cassie could not wait to go each day. She worked her muscles for one entire hour in the pool each day. I was so pleased as swimming helps children with cerebral palsy shape and tone their muscles in the low impact environment of the water. The physical benefits for Cassie are terrific and most importantly she grew again in self esteem and ability and now when asked what sport you do Cassie remember Josh wants you to say, "I swim!" Thanks Josh. We will for sure see you again.