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 blo
gging 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.
I have enjoyed blo
gging 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.
Hey, I just happened across your blog. Thanks so much for writing! It sounds like Cassie is doing great - keep it up Cassie! If you are ever in need of any cerebral palsy resources, check out CP family network. I have found them to have really valuable advice on medical and legal issues, as well as offering a great support network! Hope it helps!
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