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.

"Movement in Ambulatory Children with Cerebral Palsy

Over the years Cassie has been invited to participate in different research studies. A few years ago Cassie participated in the "Focus on function study" created by a research team from CanChild Centre for Childhood Disability Research at McMaster University. The study compared two treatment approaches that are being used for children with cerebral palsy. We loved participating because Cassie was able to get an intense amount of OT/PT time and we saw huge gains in her development. Cassie's grandmother participated in the study "Exploring the Information Needs of Grandparents of Children with a Disability" this was also aCanChild study and Grama was pleased to be asked. Two years ago Cassie participated in a study looking at "Movement in Ambulatory children with cerebral palsy". Cassie had the pleasure of meeting a wonderful physiotherapist from Germany named "Ute". We enjoyed the experience so much and Ute sent us a CD of the assessment which I loved reviewing 2 years later. Recently we were happy to hear from Ute again when she returned to Canada. Ute asked to reassess Cassie again and look at the quality of her movements now she is eight years old. A quote from an email received from Ute after the assessment!

It was sooo nice to see you again!

Thank you so much for coming and doing the assessment with me!!!

I appreciate it!!!

Cassie, you grew so much and I was very impressed with how self confident you are!

...and I was also happy about how much the Quality in movements improved. Great!

I send you "our" picture attached!

Thank you again for everything!

Ute

We enjoyed meeting you Ute. Cassie especially loved the power gummy bears and counting in German. The filming made her feel like a star. Take care and contact us again soon if you are ever back in Canada!! I will continue to sign up for any research studies that give Cassie extra physiotherapy as it keeps her motivated and she loves the attention.

A Supportive Family for Cassie

Today was another round of the Botox under Sedation for Cassie. Overall, I felt the day went allot better than last time. Cassie started to get anxious about the Botox procedure on Sunday afternoon. She had one short cry where she verbalized her anxiety and tried to talk about her fears. Chris did a good job distracting her and changed the subject and the rest of Sunday went okay with no crying episodes. Sunday night Cassie easily took her .5mg of Ativan and had a good night sleep. She knew she was not allowed anything to eat or drink after 2400. Bright and early this morning Cassie awoke and immediately started crying as she knew it was the big day. The tears melted Chris enough that he called in and took the day off work. A quick call to Gramma and Grandpa cheered Cassie up. They were already on their way to our house from Dunnville in hopes of seeing Cassie and offering support and encouragement. What wonderful Grandparents. We gave Cassie another .5 mg of Ativan, thinking it may calm her nerves allowing us to get through the morning. We told Cassie to lay on the couch and watch TV. Half an hour later she was zooming around the house skipping and running and she was chattering a mile a minute: the medication seemed to have the reverse affect. After Gramma arrived the morning went extremely well. Gramma has such a special relationship with our girls. She told Cassie funny stories and played with her and kept her busy as we got ready to go to the hospital.
Cassie had no behavior or tears the rest of the morning and she went willingly to Mcmaster children's hospital. We arrived at the Pharmacy where we were supposed to pick up the Botox. The pharmacist told us that Manulife had denied payment of the drug. The pharmacist made calls to Manulife but to no avail and we were told we would have to cancel the procedure. I went to talk to Nancy Goldie the RN and Dr. Mesterman. I was not quite sure what the problem was because we had sent Manulife all the required medical information and we were told it was approved. I was confused and disappointed and did not want the procedure to be canceled as Cassie had spent time with her Child life worker last week. She had taken 2 doses of Ativan and Chris and I had taken the day off work the let down was frustrating. After talking with the doctor I arrived back at the pharmacy to tell Chris we will have to cancel and found Grampa ready with his Visa card offering to pay the $1200.00 payment for the Botox medicine. Grampa bought the medicine and we thought we would have to battle Manulife at a later time and set about assisting Cassie through the procedure. Right away Chris got on the cell phone with Manulife while we took Cassie to the Pediatric sedation unit and assisted Cassie to get prepared to go to sleep.
The McMaster Pediatric Sedation Unit is a brand new bright cheerful unit. I noticed today that the unit has the most understanding professionals working with the children. Cassie arrived with an entourage of support people (Mommy, Daddy, Julia, Gramma and Grampa). We attempted to say good bye to the support people and just Cassie and I went into the room. Cassie asked for her big sister Julia and the nurses let her in. Then Cassie seeing Julia was allowed in asked for Gramma who they also allowed in. As Cassie's tears flowed, one by one everyone arrived until all five of her loving family were in the small room.
Each one of Cassie's supportive family played a part today in helping Cassie to get through her procedure. I was surprised not one of us was asked to leave. We are a loud noisy family and the professionals had to sort of work around us. The nurses all commented on how good Julia is with Cassie. JULIA IS THE MOST SUPPORTIVE, CALM, WONDERFUL, BIG SISTER!! She may have a calling in the medical field. Julia was instrumental in getting Cassie through the IV start and onto the bed and hooked up to monitors, BP and oxygen. I was busy answering the Internists questions, giving medical information and consent. They allowed me to go on the stretcher with Cassie in my lap the entire time. Cassie cried at times. Tara taught her it is okay to cry but at no time was Cassie overly panicked, she did not scream and she had control of herself the entire time. She was not in any distress and she talked through the tears. At one point Chris picked her up out of my lap, I snuck off the stretcher and Cassie layed on the bed herself. She was quickly sent off to sleepy land. I can't thank the wonderful Mcmaster team enough for allowing the entire family in the room. It was quite comical watching all five of us trying to please Cassie, the team referred to Cassie as the princess as she barked orders and we all jumped trying to do what she wanted. As we joked about the "princess we all practised Queen waves and Nancy Goldie RN distracted Cassie by discussing horses and Hannah Montana. I am so appreciative of my wonderful family. I am appreciative of the wonderful team at Mcmaster Children's hospital who understand children. They tried to make the entire procedure as pleasant as possible. They allowed the entire family family to support Cassie and worked around us.
With Cassie asleep we left her in the capable hands of the team. As we walked out of the room Chris shared the good news that after 45 minutes on the cell phone with Manulife they had found the approval for Cassie's medicine. Chris went back to the pharmacy and the pharmacist reversed the charge off of Grampa's Visa. Chris's patience on the phone payed off and Chris felt good that the bill had been worked out. Another victory for Team Fruck!
Cassie awoke after fifteen minutes on the recovery stretcher. She woke pleasant and began chatting with the boy in the next bed. Three year old Ethan who has right sided Cerebral palsy. She ate a banana Popsicle and had a special visitor Tara her child life worker who came with a big smile, lots of congratulations and a really nice present for doing a good job. The gift is sewing craft, a wonderful two- handed gift that is great for working on fine motor. This will be great for the left hand that just got the botox. I mentioned before how valuable the child life worker is and I can't say thanks enough to Tara. I feel the day was a success.
The muscles that received Botox today are the gastrocs, tib posterior, add. hall, add poll, pronator neres. Cassie does not need serial casting this time around but we will be working extra hard with therapy and exercise to strengthen up these muscles. Already tonight Cassie's foot appears looser. Her foot slides easily and flat into her AFO. Her big toe is not stuck up in the air. Cassie has no pain or redness from the injection sites. We will do as much exercise as we can and have plans for bike riding and a group of exercises to do at home. Hopefully Cassie's PT will have some time for her as well. More importantly, I feel blessed and happy for Cassie because she is a very lucky little girl who has a terrific family who love and support her (forever and always).