Saturday, February 13, 2016

Cassie is fifteen

Today Cassie told me she showed her blog to her teacher and EA's at her high school. She asked me why I do not blog about her anymore. I told her when she hit a certain age she asked me not too.  Cassie promptly told me  she said she would like it if I kept blogging about her so here is your first update Cassie in quite a few years!!  Cassie is a typical teenager, she loves hanging out with her friends and cousins.  Listening to music with her BEATS and Pill.  Her favorite bands are 5 Seconds of Summer and  One direction.  She loves surfacing the internet for funny videos and VLOG families.    Cassie volunteers every Wednesday at our church with a program called  MACSOC.  Run by the Mcmaster Nursing students and our church helping the homeless or disadvantaged  Cassie attends St Johns Evangelical Lutheran Youth group.  She attends YAC, (Youth Advisory Council).  Recently she was an Ambassador for the New Ron Joyce Children Center, She was on the CANCHILD youth panel for family Engagement day.  Cassie still sees a developmental pediatrician, orthopedic surgeon, Neurosurgeon for her shunt, Cassie attends the Teen transition clinic with Dr. Gorter,  She sees Julia her OT and her entire rehab focus is on learning life skills that promote independence.

I am thrilled with the support she has been provided by Children Developmental Rehabilitation Program.  Cassie is looking forward to her time at the New Ron Joyce Centre for her last few years before transition to adult health care.  I have grown as well as a mother of a girl with a disability.  I am the Parent Ad visor for CP Net.  I will link you to the CP Net website.  I follow websites for Mcmaster children s hospital, CANCHILD, NeuroDev Net, Easter Seals Ontario, CP net family Network, CP Alliance, Ontario Brain Institute, OFCP and Spina Bifidia and Hydrocephalus Association.

I am so Happy Cassie says I can blog again.  I will fill the blog with Teen transition for a young girl with CP.
Happy Family Day!!

Cassie with her Cousin Emily!!

Thursday, November 13, 2014

Thursday, February 27, 2014

Cassie gets picked for Dream Lift

Cassie was referred to Dream Lift by her CDRP therapist Julia. Cassie will fly to Florida on April 22, 2014 for the day, she will have a volunter and spend the day in Disney world with a lot of other children with disabilities. A Sunshine Dream Lift transports a plane full of children to a special destination (like Disneyland) and back. For many of the children, a DreamLift is more than just fun. It is their first chance to taste independence and experience the adventure of a first plane ride or a first day away from mom and dad.

I love these two sisters!

Tuesday, January 22, 2013

An article Posted in the Dunnville Chronic July 29, 2009

I found this article saved in my drafts, it made me smile.  Cassie three years later is a fish in the water.  She swims about 12 lengths of the Ancaster Aquatic Centre.  It is amazing to see how far she has come. 


Up until recently, Kathy Fruck has never had any luck getting her eight-year-old daughter Cassie interested in swimming. But that was before they met Josh Packham.
Soon after beginning her private swimming instruction at the Packham family pool, the youngster with cerebral palsy was taking to her lessons like a duck to water.
"I heard about the lessons from a friend of the family," said Fruck," adding that Cassie was one of "a small class of three children. I tried to get my daughter swimming in Hamilton with many programs and she has never enjoyed it. She has been afraid of water. But I think it was his style. He's really good with children," she said, referring to 25- year-old Josh Packham.
"Every day, Cassie wanted to go. She couldn't wait to get there. Every day she was talking about Josh and phoning my mom and telling her about what she did that day."
Set in a homey environment, "on a country farm road with a big fence around the pool," Fruck feels the relaxed atmosphere also made it easier for the young students to learn how to swim.
"They have it set up with a little changeroom and the parents get to sit outside the pool and watch the kids swim."
More than anything, Fruck believes Packham's supportive teaching technique is what leads to children's ultimate success in mastering movement within the water.
"He's so comical with the kids," said Fruck. "They were all at different levels. The one little boy had fears in the deep end and the third one could go to the deep end, but I think it was better that way, because Cassie had some boys to pattern herself after, which worked well. She has totally taken off and she would never let go of the wall before, so just getting comfortable getting in and out is huge. She can float and learned how to use a float-board and kick across the pool. If you have C. P., it takes a lot of coordination and she does it for him. "My mom even said, 'If he told me to jump in, I'd do it.'"
Under Packham's tutelage, Cassie has also learned to master her fear of putting her face in the water, which was formerly "a big scare for her," according to Fruck.
"Josh would ask Cassie, 'Is your hair wet, Cassie?'" Once she felt it and found that it wasn't, she tting her face in, said Fruck.
"It's such a neat style and the kids try a little harder for him. The boy didn't really want to jump in the deep end but the next thing you knew, he was doing it. It's offering so much encouragement for the bravery; this man with the upbeat class."

Although the lessons only lasted an hour a day for a week, Fruck hopes to enroll Cassie for another week during August.
"It's a great summer job," said Packham, a supply teacher for Haldimand students from Kindergarten through Grade 10. A swimmer since the age of three, Packham and his younger brother Jeremy enjoy sharing swimming skills in their home base. "I've done it for 10 years."
When it comes to teaching children with physical limitations, such as Cassie, he finds that "just having a good attitude helps. We made sure she could work on stuff she would be successful with," he explained. "We didn't worry about the stuff that she was unable to do."
Classes begin every hour from Monday through Friday at the Packham's pool on Lane Road. "You just call and sign up and we put you in the appropriate time slot for your level," said Packham. "When they finish the week, they get a report card listing the requirements and then they get a badge."

We spend a lot of time at the Lake, Cassie loves to swim.  She has been doing All ages laps and uses a flutter board, sometimes she swims with no board, she still needs goggles as she does not like chlorine in her eyes.   

Thursday, March 8, 2012

I have a reason to be
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
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
There is still a light out
Be happy so I can smile at

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 The shoes come from 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.