Emotions
I have a reason to be
upset
But I won’t take it out on
you because of it
I have a reason to be mad
But I won’t yell at you for
it
I have a reason to cry
my back grows crooked
I have a reason to love
That love is endless
My way of thinking is
different from yours
If you think I’m wrong, than
maybe I am.
I will never say I was
That’s me and there’s no way
to change who I am
So if I cry don’t be
sad.
There is still a light out
there.
Be happy so I can smile at
you.
Copyright©2011JuliaFruck

11 year old Cassie is having a Great Year

Cassie turned 11 this year. She is having a great year in Grade 5. Her favorite subjects are science, language and gym. Cassie has many friends in school; Chelsea, Rachel, Paighton and Erin. At church her best friend is Olivia and her friend on her street is Shelby. Her best friends with disabilities are Katie and Ashyln. Recently, I was honoured and touched to receive an email from Shauna at the Spina Bifida and Hydrocephalus Association of Ontario asking to link my blog to their website. I am happy to agree to this as I have always wanted to give back to this amazing organization. SB&H has provided my family with education and support over the last 11 years. I hope other parents find my blog helpful when raising their child who may have hydrocephalus. Although alot of Spina Bifida kids have shunts Cassie is actually cerebral palsy and hydrocephalus caused by an intraventricular hemmorage in her brain. Thankfully we can report that Cassie has now had the same VP shunt for close to 11 years. We understand that shunt complications can arise at any time, we are educated about shunt complications and know the signs to watch for but we do not stress and worry about complications at this point in our girls life. Cassie's wonderful neurosurgeon Dr. Rob Hollenberg has retired from Macmaster Children's hospital. Despite one shunt infection, shunt externalized, shunt removed and new shunt put in we had no further shunt malfunctions now for over ten years. Two new pediatric neurosurgeons have replaced Dr. Hollenberg. Dr. Singh and Dr. Gunnerson. Thoughtfully the doctors agreed that Cassie can come for shunt checks every two years now!!
I have enjoyed blogging about learning difficulties that are associated with hydrocephalus and brain injury in the past. Cassie suffers from very specific learning disabilities and has interesting neuropsychological reports describing areas of strength and areas of weakness. Having a wonderful grade 5 teacher Mrs. Hahn and a wonderful EA Mrs. Cook has made a world of difference this year in school. Cassie has matured and flourished in grade 5. Using a modified IEP and report card based on her IEP Cassie received her first A in math this year. Our girl was so proud of herself and her self esteem is soaring this year. The individual program in Grade 5 with class room modifications has allowed Cassie to be integrated and staying on track socially with her friends. The school has now obtained a laptop and Cassie is accessing technology in her classroom. Cassie has made progress in sharing ideas, and despite low written output she is able to learn visually and shares ideas verbally and with technology. Best of all Cassie loves going to school everyday. We are so thrilled with Fessenden school, Mrs Hahn and Mrs Cook. These teachers play to Cassies strengths and ignore some of her weaknesses always being positive and eager to help our girl.
Cassie now walks to and from school everyday which is a good ten minute walk. She can ride her bike to the park unassisted. Horse back riding is still Cassie's passion. She continues to ride at TEAD and is now riding one of the larger horses Lexie. Cassie can tack Lexie up herself. She can post, walk, trot, turn, change the rein and much more on her horse. March break Camp is next week and Cassie can't wait for extra time in the barn.
Last year Cassie was back on CH CH news. Her Never Say Never attitude and love for Justin Beiber was filmed and aired around Hamilton.
Rehab wise our family decided to take a break from Botox and Cassies left wrist and hand steadily worsened. Cassie has grown alot and spasticity continues to be a challenge. We will be returning to Dr. Gorter at Macmaster Childrens hospital for another reassessment and may need to rethink some therapy and future injections. Cassie took her yearly flu shot bravely and has matured so we can talk about options with wonderful Dr. Gorter. Being an RN and Case Manager I am always willing to have Cassie participate in research studies. Cassie recently joined a study at Macmaster Hospital trialling a new foot brace called the ToeOFF carbon brace. Dr. Burrows is looking at the effectiveness of Innovative Bracing in Children with Lower Limb Disability who require Ankle Foot Orthosis. As I have written before the AFOs have definately contributed to decreased functionality in Cassies left foot. Although the foot is straight it is weak and stiff. We still work to maintain proper bone alignment as Cassie is still growing but the carbon fibre brace alows more flexibility and movement around her ankle. Cassie adjusted easily to the new brace and wears it all day at school and for gym and for any intense physical activity. The website for this brace is www.allardusa.com. The shoes come from www.keepingpace.com. I can post a picture of her new brace. The studies are early on and Cassie continues to wear her AFO at times as well. The orthotist for Cassie's new ToeOff Carbon Fibre brace Eric Bapty is really gentle and kind to Cassie. We have also had the greatest orthotist Sharon Carr makes Cassie's AFO at Macmaster Chedoke's prosthetics and Orthotics. Cassie continues with frequent mobility assessments done by her PT Cindy Gamberetto and at Macmaster's Gait and Mobility lab.
On a last note five weeks ago Cassies older sister Julia had a spine operation. Julia has Scheurmann's kyphosis and had two rods inserted in her back. I think Cassie has realized that she is not alone in challenges. Cassie is thoughtful and helpful to her sister, showing sensitivity towards the challenges Julia is facing in her recovery. My two girls make me so proud. I hope to continue to share our girls journey with the goal of sharing raising a special needs child with other parents and am happy to link my blog to the parents section of the SB&H of Ontario's website.

Hamilton Challenger Baseball banquet

Cassie and her friend Katie at the Hamilton Challenger Baseball banquet

Cassie receiving her trophey!! Way to go girl

Compare these two pictures for Cassie's Foot

The Left Foot one year ago, the new left foot one year after Orthopedic Surgery

Did I ever post pictures of Cassie's Foot Post Orthopedic Surgery

Here are four pictures of Cassie's left foot. Much straighter and much flatter. The difficult issue of muscle tone still prevails. Cassie's big toe always curls up and her foot still wants to roll out. She can correct it when she thinks hard about it. The need for AFO is still one hunderd percent present due to the tendency for the weak foot to want to do its usual thing. The Foot slides easily into her AFO and looks very beautiful. Heading off to see two doctors next week, Orthopedic surgeon and physiatrist at the one year mark post surgery. Also looking for new exercise opportunites. Could not find funding for a bike as we make too much money now that Chris and I both work full time. Found the best bike at Brant Cycle in Burlington. It is a three wheel trike and Cassie has done so well learning to ride. Love the work out the left wrist and hand gets when biking. I am so thrilled with my daughters progress. I am so thrilled with my older daughter Julia as she is the best big sister teaching her little sister to ride a bike and letting her tag along all the time!! Julia you rock!!

Johnny Cash and Patsy Cline Tribute Band and Diner at Carmens Easter Seals Event

We had the privilege of receiving tickets to an event at Carmens in Hamilton Featuring a Johnny Cash and Patsy Cline tribute Band. The Event was a Silent Aution Fundraiser for the Easter Seals of Ontario. The Easter Seals is dedicated to helping children with physical disabilities achieve their full individual potential and future independence. We have been able to go to numerous Easter Seal events in the past and this event was another highlight in Cassie's life. The girls loved the tantalizing cuisine at Carmens. Julia loved the tapestries that adorned the ceiling. The concert was an Authentic "Man in Black Show" and a masterful creation of the unique style of the country singer Patsy Cline. The girls had trouble staying in their seats and danced together at the back of the banquet hall. It was a wonderful event and a great start to our March break 2011.

Julia took pictures of the tapestry!!

The girls dancing at the back of the hall!!

Chris and Cassie at the diner table. Delicious Food!!

Julia and I, Julia looks so grown up at almost 13 years of age. I am so proud of my girls!

Gait Analysis (Movement Lab at McMaster Children's hospital

Our nine-year old daughter looks like other young girl her age. Her walking abilities are so good right now a lot of people don’t even realize she was born with cerebral palsy. Cassie can run playfully at recess with the other children, walk to the park or walk her horse around the barn at her therapeutic riding club. Our daughter frequently requires an assessment of her gait or moving abilities. Gait assessments have been done before and after each procedure that Cassie has trailed. Every parents dream for their disabled child is to have them walk, thus promoting independence, accessibility and living a productive life.
The efforts to improve our daughters walking abilities; have been tireless for us as parents and successful thanks to a large team of health care specialists at Mcmaster Children’s hospital. Born with a brain injury our daughter got her first pair of leg braces by six months of age. For the first three years of her young life Cassie scooted around on her bottom, using one hand and a foot to propel herself forward, she never crawled and had extreme difficulty pulling her self up or balancing. So began the exhausting journey to rehabilitate our daughter.
The Mcmaster team consisted of physiotherapists, occupational therapists at Chedoke Developmental Rehabilitation Program, a developmental pediatrician, an orthopedic specialist, a physiatrist, an extremely talent orthotist and lastly two average parents, hard working middle class, with dreams for their daughter that she will walk as best she can. The last nine years of treatments have consisted of extensive physiotherapy, conductive education, gait training on a tread mill, new braces made every 10-12 months for nine years, serial casting procedures, botox treatments and repeated gait analysis done through Mcmasters Movement Lab. Many of the treatments remain uncovered by OHIP, causing financial hardship for parents, extended benefit struggles and fund raising efforts. The gait analysis done in the movement lab is an OHIP covered desperately needed service and this article will outline why it is so valuable.
The Movement lab is an essential service needed to improve children’s walking abilities. Located at Mcmasters Innovation Park this lab examines closely the gait of children and adults with walking problems. A movement assessment allows doctors, therapists and orthotists to look closely at how our daughter’s muscles and joint’s work when she is moving. This information helps her team make decisions about exercises, braces and surgery. It also shows the team how movement changes over time due to her growth or treatments she has undergone. The full assessment includes a collection of EMG and/or Kinematic and Kinetic info and a video. The test takes only about one and a half hours for the patient however the analysis takes many hours and is essential and useful when examining the complex walking patterns of children.
The use of the Gail Analysis guided our daughter’s orthopedic specialist decision to perform a much-needed orthopedic surgery on her left foot. Six months later our daughter walks without the aide of a wheelchair, walker or even a cane. Our nine- year old daughter is begging her dad to sign up for soccer with her best friends in Ancaster. The tireless hours invested and the specialized team approach has yielded wonderful results. The possibilities for our child are enormous. There are still promising improvements in gait analysis technology on the horizon. Our daughter needs this essential Movement lab until she reaches full height. New procedures are still being developed and planned for children with cerebral palsy or other forms of movement disorders. The Proper use of Gait analysis yields better results for patients. We are still using the Gait analysis for indications for various types of orthotics for our child. We are pursuing a new sport orthotic for our daughter and you can bet Cassie will play soccer in the near future thanks to the medical professionals at Mcmaster Children’s hospital and the Much needed Movement Laboratory!!

Cassie walking her dog Charlie, My favorite place Port Maitland Pier