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.

"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).

Cassie's Favorite Activity riding at TEAD

MISSION STATEMENT:

“T.E.A.D. is dedicated to enhancing the quality of life for children and adults with disabilities through a unique form of proven therapy with the use of horses”

Since its inception in 1978, T.E.A.D. has provided thousands of individuals young and old with a different approach to their situation. Located in the rolling pastures of Mount Hope, T.E.A.D. is dedicated to enhancing the quality of life for children and adults with disabilities through equestrian therapy, a proven method in dealing with the challenges presented to them by their disabilities. We endeavour to fulfill our mission statement with honesty, integrity, and accountability, with which the professionalism and compassion of staff, instructors and volunteers empower our riders with disabilities to a level of riding that earns the respect of all involved at T.E.A.D.

Cassie riding her favorite horse Robin. Born in 1986 he is 23 years old. He is a Paint that stands 15.2 hands high. He has been a therapy horse since 2003 at TEAD and Cassie has ridden him for four years now.
One of the best parts about TEAD is the children make lasting friendships with other children with disabilities. Above is Katie, Ashyln and Cassie stretching their legs before the ride.

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Cassie with her riding instructor Pat Bullock and her three best friends at TEAD. Pat is an awesome instuctor who knows Cassie really well. Cassie has progressed this year to no side walker and time with no leader where she steers the horse herself as well as trotting and posting. All thanks to the dedication and hard work of Pat. Thanks for your time, expertise and patience with with Cassie.

I wrote this and read it at TEAD's Riding Forward Tours because we whole heartedly beleive in this program and want it to continue to operate as it is our daughters absolute favorite form of therapy.

Our daughter Cassandra developed a brain injury in utero. The right side of her brain was severely damaged. She was born with hydrocephalus a condition where cerebral spinal fluid builds up in the brain. She had numerous brain surgeries as a baby to place a shunt in her brain and drain fluid. She developed lots of life threatening complications and had numerous shunt surgeries. We were told right from the start that she was high risk for cerebral palsy and seizures. Cassie did not sit up at six months and never learned to crawl. Walking took years of rehabilitation with physiotherapy, orthotics, walkers and gait training. When she was very young we heard about TEAD. We filled out the paperwork and had her on the list to ride as soon as she was old enough.

TEAD is a special organization that values children and treats them all with dignity. Cassie has been riding for 5 ½ years now. The TEAD organization has helped her gain pride, self-esteem and confidence. The instructors know each child’s special needs emphasizing their strengths. Cassie loves the instructors so much that each week she runs to hug them. Her favorite horses are Champion and Robin. She is able to talk to the horse. She uses her voice to make these large animals follow her directions. It empowers her and gives her confidence. She has made friends with volunteers who she realizes are special helpers there to help her and make the riding session fun. She has made lasting friendships with other little girls who ride in her club. They all have health problems or disabilities and she is able to talk to them and they socialize and it makes her feel special to have these friends. Sometimes Cassie has had to face hard questions from children at school. The ask her why she walks funny or wears big leg braces or they ask her why she cant climb on play equipment or run fast. She has developed a nice way of talking about her strengths and often tells these children “But I ride horses really well”. She has taken videos of her riding to school for show and tell and the children were so impressed and she felt like a star! She loves the club so much she asked to have her sixth birthday in the clubhouse. She took her friends from school on a tour of the barn. They were so impressed and she was able to confidently tell them all about the program and what it means to her. Sometimes children with a physical disability have trouble doing sports or fitting in with their peers. TEAD has given our daughter confidence and helped her social skills.

Cassie has had to work hard over the years doing physiotherapy. TEAD is a fun way for her to do therapy. It involves using her mind to follow directions and keeping the horse moving which in turn helps retrain her injured brain. It also involves using her weak hand to hold the reigns and lead the horse. She uses her weak legs to walk-on trot and turn. It is full bodywork out for one hour each week. She comes off the horse tired and pleasantly exhilarated. She feels at home in this club and she loves the staff and the horses and other children. Cassie cant wait for this July when she will attend a full week in summer camp and we cant wait to see the things she learns and we really thank the club for helping Cassie live her dreams and build her confidence.

Support this wonderful club. They always need volunteers and it is one of the special places in the world!!

Mother's Day

Although I had to work a shift at the hospital, my mother's day was really nice. The girls made breakfast in bed and then said they were hungry and proceeded to eat my eggs! Nothing better than sharing breakfast in bed. Julia being a preteen said she started a card but did not finish it. (So teenagerish). Cassie had lots of homemade cards she was proud to give. The girls sang to the mother's at church and because I missed it Chris brought them to St Joe's and gave me a flower. It was nice to show the girls off to my work colleagues. Chris and the girls spent the afternoon with Oma. I felt bad all weekend that I could not drive to Dunnville to visit my mom. I called her twice and when I arrived home from work we were eating supper and my MOM walked in. What a great way to end the day. I love being a mother and I realize that my girls are growing up quickly!!

Getting Ready for Round Two of Botox

Cassie at McMaster Children's Hospital 2Q Clinic coming for an appointment to meet Tara her Child Life Worker.

The Botox appointment was moved to June 8, 2009 which was fine with me as it gives Cassie a little bit more preparation time with her child life worker Tara

The plan is to receive 4 needles (300 units). The muscles that will be injected are the gastrocs, add. hall, add. poll, pronator meres. I am not sure if I have the names exactly right but I am going to get an anatomy book and look them up. I am worried about the lack of physiotherapy available after the June 8 injections. Cassie's therapist at the after school clinic went off on maternity leave and one of the cost containment measures at CDRP was to not replace the therapist. This was one of the most valuable physiotherapy clinics Cassie ever participated in and I am extremely disappointed to not have access to it. Although it was only one hour a week it was the best program for Cassie. She loved working in the gym with the other children. She was motivated and loved the program. I wrote a letter asking them to reconsider but have not heard anything. I decided on my own to try to learn the muscles being injected with Botox and then I will ask the therapist to show me some exercises that will help these muscles strengthen. Cassie already has exercise equipment in our basement. I may try to find a physio student or a kinesology student and see if they wan to work on some of our home exercise programs with a very cute little girl.Cassie took Sarah doll in to see Tara today. They started an IV and gave Sarah blue and green sleepy medicine. Cassie has walked through the entire procedure of having an IV start. We have come up with lots of strategies for the big day. Here are the few most important ones.
1. Ativan the night before to help her sleep
2. Ativan the morning of the appointment
3. Don't mention the appointment until we head out in the car.
4. Emla patch on 45 minutes before the poke.
5. Bring Walkman with Hannah Montana Music for a listening distraction
6. Sit on Mommy's lap during the IV start with Tara "Safe person in the hospital standing by to tell the nurses all Cassie's strategies.
7. Look away during the poke. Mommy to do the imagery breathing techniques learned with Cassie.
8. Mommy has a special never before heard story as a distraction during the rough periods.
9. Next visit to hospital Tara to take Cassie to the clinic room to look around
10. Cassie to have access to her own special girl band aids.
11. Wake up time. Nice drink and TV to watch with roommate.
12. Internist will consider need for oral Medazolam that helps erase memory but this may not be necessary this time we will see.

Stay tuned to see how the strategies empowered Cassie and help to decrease her fears and assist her to deal with a painful sensation. I am confident the plan will make things easier on her.

School System Resource Meeting

The Focus for me this month has been How to Help Cassie Succeed at School. Therefore I have not had too much time for the Blog.
I am very pleased to report the school meeting went extremely well. The purpose of the meeting was to discuss Cassie's academic progress and implement measures to ensure her success. The Principal Catherine Youngblud is really terrific and knows so much about how to ensure success at school. She understands the complex issues involved with Cassie and knows how to navigate well through the education system. Cassie's OT Joanne Doherty attended as well as Mr. Moase (teacher), Mrs. McIntosh(EA), Mrs. Holloway (Resource teacher) and myself. Joanne recommended Cassie use assistive technology. Her fine motor is weak in printing and cutting although she has made improvements. A computer should be Incorporated into her program. The teachers had samples of Cassie's printing and the OT felt the legibility was good. The printing takes allot of time for Cassie and slows her down somewhat. It was recommended that Cassie use her programs Clicker 5 a few times a week in the computer lab. The Clicker 5 program is board approved and helps children write independently? The EA's will no longer be scribing for Cassie.

Clicker is a writing-support tool for any subject area.The program helps a child build sentences by selecting words, phrases and pictures. Cassie finds it useful to hear words spoken by realistic software speech before she writes and Cassie can hear completed sentences spoken back to her. The program is powerful, versatile and easy to use. I love it because it is supported by hundreds of free teaching resources at LearningGrids.com!

Here is a little bit more about the tool!!

The Clicker 5 Guide

1. What is Clicker?

Clicker is a writing support and multimedia tool for children of all abilities.

At the top of the screen is a word processor called ‘Clicker Writer’.

At the bottom of the screen is the ‘Clicker Grid’.

This has ‘cells’ containing letters, words or phrases that you can click on, to send them into Clicker Writer – so children can write sentences without actually writing or using the keyboard! This is a very good program for a little girl with memory problems and complex learning difficulties.

Funding continues to be a big problem for schools in the area of computer availability in classrooms. I was surprised to hear Cassie's classroom has no computer or outlets available for computer hook up. What a shame but funding money is allocated carefully by the principal and Fessenden is an old school.

Cassie has been supported by her OT Julia Lockhart at CDRP and has worked hard to learn to type. Julia made Cassie a color coded one handed typing program. We notice when Cassie tries to type two handed the weak left hand slows her down and her concentration comes off her sentence building to concentrate on getting the weak hand to type. I am pleased about the easier one handed typing and allowing Cassie freedom to work on her school work. When Cassie reaches a certain skill level then Julia will apply for funding for a lap top for Cassie. This will be so helpful for ensuring success in her school life!! I can't wait actually to have access to her own laptop that I can fill full of tools she needs to be independent. Cassie may have some weaker skills in grade 2 but already she is developing some awesome skills that other grade 2 children don't have. I think being a strong key boarder will certainly assist her academically.

A Few other terrific ideas came out of the meeting. Everyone agreed how hard Cassie works. Although she is not at a grade 2 level on her IEP she is continually making progress. Cassie's math is improving. She does well with a number line. She is beginning to pick up regrouping. Cassie is at a DRA level of 2B. She requires consistency to be successful. Catherine suggested she try some taped books from the library. The main points that I loved from Catherine were: Cassie needs to be a risk taker, try to empower her, independence and initiative are very important and keeping the school experience positive. It was recommended that Cassie be in a split 2/3 class next year so she has more time to keep working at a grade 2 level if she needs. I love these strategies and I am so excited to see Cassie's progress!!I recommend to parents to attend meetings. The brain storming is invaluable. The expertise of each part of the school team coming together for ideas will surely help ensure Cassie makes academic progress. I had a list of ten issues on a paper I wanted to address and interestingly I never brought any of them up because they were all addressed in the meeting with out me initiating the topic. I was very pleased with the outcome and am working with Cassie a lot at home to reinforce what is being worked on at school.
Thanks to the Fessenden team you are invaluable and we appreciate the extra efforts for our girl!

Don't Worry I Still Have Lots to Say

I have not had much time to write these days. I am filling most evenings up with the girls homework and teaching Cassie how to read. All of the effort is completely paying off and she is actually reading her level 1 readers. Tomorrow is a school meeting with the principal, teacher, resource teacher, OT and EA's (not sure if all three are attending) so stay tuned. I have had some frustrating days lately. I arrived at Chedoke hospital to meet Cassie's new developmental pediatrician and low and behold their was a booking error and two families were booked at the same time. I was very frustrated after taking a day off work. Cassie was very happy. She did not want to meet a new doctor and wanted to go to school so we booted out of the hospital but the parking still cost us $5.00. We see the new doctor on April 30th instead. We had another appointment for the orthopedic specialist and we got a note that she no longer sees kids at Chedoke hospital and they changed the appointment date. I was annoyed again because it meant changing a work day again. My nice ER case manager partner volunteered to switch a shift. Thanks so much Kelly. I owe you one. Sometimes I wonder how a parent is supposed to hold down a job trying to juggle these appointments. I realize stress is a factor in my irritation as these small set backs are bothering me too much. I am trying to make money and at every turn my work schedule is affected and I need to go rearrange for an appointment for Cass.
On a happy note my entire family had an invitation to the Easter Seal's Telethon at the CBC Building in Toronto. It was fascinating watching the filming of a TV program as well as listening to the music of some wonderful choirs and performers. The girls had a wonderful time with face painting, making cookies and crafts. My two beautiful butterflies Julia and Cassie came home from T.O. tired but had a wonderful time.

Yesterday Cassie went to the Orthopedic Specialist at Mcmaster Children's hospital. We waited approximately an hour and a half and finally got in to see the doc. Dr. Burrow's took one look at how good Cassie walked into the room and said, "I don't need to operate on your foot from the looks of how good your walking Cassie!" She told Cassie to keep working hard especially while she is growing so fast. She gave me lots of praise and congratulations as well. She wants us to stretch her hamstrings daily which we were already doing but she would like another 10 degrees to the stretch. Dr. Burrows will see Cassie again in 8 months. Cassie taught the surgeon how to do Cat's cradle with a string. Dr. Burrows is wonderful and patient with children. She says when Cassie outgrows the brace on the right foot she can trial no brace. I admitted to taking Cassie out of her left AFO on weekends and at night. Dr Burrows smiled and said don't tell too many people. So supportive and understanding. But Shhhh she does not want me to share this information with too many. (I had just told the entire world on the blog. Maybe this sharing thing is not so good) The people were nice at the 2Q clinic at Mcmaster however the parking is triple the cost of Chedoke hospital. I had to run off quickly to work so Aunt Helen came and drove Cassie back to school so I paid for two cars to park at the children's hospital. I may have to remortgage the house now. I really needed the positive feedback about Cassie's foot and coming from a specialist it meant a lot to me. The left foot is a dynamic problem that is not easily corrected surgically. Their are a number of surgeons doing tendon transfers mainly in the United States and Dr. Burrow may do this type of thing in the near future. I think the exercise and strengthening is still the most important part working to correct her foot deformity.
Cassie receives four Botox needles on May 11, 2009 at the spasticity clinic. We have two more appointments with Tara the Child Life worker to work on Cassie not freaking out during the procedure. We also have drugs to give Cassie at bedtime and the morning of the procedure. So we can all get some sleep. Wish me luck. I don't like to see my little one anxious or in pain. I have learned two exciting visualization techniques and written a wonderful children's story which I have saved as a special surprise to share with Cassie if she gets nervous while she is waiting. We will also go to the new Hannah Montana movie after the procedure as a reward and because with sedation Cassie is not able to return to school that day. Tara will be with us during the procedure so I am optimistic it will go better.
As always I have been writing too much about Cassie but this is the focus of the blog. Raising a special needs child. I can't leave out bragging about my big girl however. Julia continues to work hard in grade 5. She had 2 A +'s this report card and lots of A's and B +'s. She is learning "The Bear Necessity" with chords on her guitar. She is singing a vocal song called "Break away" by Kelly Clarkson for her big finale show in June. I can hardly wait to hear her; The song has a big WOW factor to it. Julia has grown so tall so fast she has developed adolescent PatelloFemoralMyofascial imbalance. A fancy way of saying knee pain. She is seeing a wonderful foot, knee and back doctor named Dr. Norman and has a rehab program of balance, strengthening and endurance exercises for her knees. Who's kidding she needed some attention and exercise just like her sister. Keep up the good work Julia. Your growing up.
I am so happy spring has arrived. I have done a lot of spring cleaning around the house. My work life is chaotic and crazy. My ER is a busy busy place with so many people in need of homecare and difficult situations to deal with on a daily basis. My specialty is assessing and arranging adequate care for elderly and mentally unwell patients in Hamilton. I am so sad about the hospitals cost containment measures which involve closing geriatric beds and laying off my best work colleague Jane Jennings the GEM nurse (Geriatric Emergency Managment nurse). I fear for the elderly who have so much trouble navigating the health system and getting access to good care. This is another set back for Hamilton Health care that greatly saddens me and adds much more pressure to my job. I work tirelessly to advocate for seniors and will continue to do so.
Today I accompanied Chris to the Stroke Prevention clinic at the Hamilton General Hospital. Chris had another follow up appointment with the study nurse for the TIMI 51 study he is in. One of the nurses mentioned they are putting on a stroke fair again this year. We attended last year. The nurse asked me if I would be interested in participating (possibly as a guest speaker). Being a professional nurse and case manager and having a husband who stroked at 44. I was fascinated and would love to be part of this event so stay tuned.
I mentioned I had a lot to say today and I again feel wonderful getting it down in writing. I want to print and bind this blog into a special book for my girls as soon as I figure out how to print it. I worry one day my girls will say don't write about me anymore on the internet. If this day comes I will have to respect their wishes. Until then it is a fun exciting way to get ones thoughts down. I hope people keep the comments coming this is the best part of blogging.
Signing off, I'll try hard to get back to the blog quicker next post.....

All this talk about feet. How smart is your right foot?

HOW SMART IS YOUR RIGHT FOOT?

1.Lift your right foot off the floor and make clockwise circles.

2. Now, while doing this, draw the number '6' in the air with your right hand.. Your foot will change direction.

I told you so!!! And there's nothing you can do about it! You and I both know how stupid it is, but before the day is done you are going to try it again, if you've not already done so.

The question of AFO's

So we attended five weeks of Ability camp with two lead conductors who absolutely do not believe in AFO's. They for sure said that Cassie does not need her SMO on her right foot. They feel her right foot is perfect! Most of my family know I am having an extremely hard time deciding what is best. The Macmaster-Chedoke team has requested Cassie wear AFO's all the time. Cassie has had Botox, Serial Casting and CE in the last six months so as a mother I can't really say what has helped the most and maybe all three things have contributed to this wonderful strong girl who is walking really really well. I can say I am super pleased with Cassie's gait, her strength and her mobility. Her overall fitness and her eagerness to keep working out. I am pleased visually that her left calf is not a tiny stick leg and her small left foot is growing and looking better in size. I think the AFO's were weakening the calf muscles, weakening a lot of muscles in her foot really and stopping some growth of her foot. Upon return home I found Dr. Sloat in Ancaster a chiropractor who is supportive of my exercise approach. Cassie has seen her three times now. She has a plan for more weight bearing on the left leg. More exercises including a small trampoline that Cassie walks on in bear feet. Cassie got her new trampoline as an early easter bunny present from mommy and daddy. Julia got an exercise ball and weights. I am empowered to believe I want my daughter out of AFO's more of the time. Cassie wore her orthopedic sandals all weekend and after school. She did all her trampoline exercise in bare feet. She walked on her toes and heels and stretched her foot all weekend. She is learning to walk around toeing out and we have all walked like ducks around the house acting goofy with her over the weekend. Dr. Sloat works on stimulating the pelvis and watching her leg length discrepancy and assists me with the left foot. I feel much better about this approach as the orthopedic surgeon freaked me out when she once suggested if Cassie's left leg was two short they do surgery to stop the growth of the good leg. I absolutely do not want this procedure. I hope the chiropractor can help with the leg length discrepancies and avoid any extreme medical procedures such as stopping the growth of the right leg. Cassie and I agreed she would wear her AFO's to school every day. At school she is concentrating so hard on her program she can't possibly worry about correcting her own foot and concentrate on school work. We will continue with our own individual plan of no AFO's in the evening and weekend. I feel good about the decision. I will continue to talk to her team of PT, OT, physiatrist and orthopedic specialist about our decision. I want to listen to every opinion and take from them all what I think is best for my girl in her present situation.
I like having the left leg and foot look more equal in size to the right and I like Cassie's abilities to build muscle in the weak left foot and leg when it is not constricted in the AFO. The chiropractor continues to work on her foot. I mobilize the calcaneous four times a day and Cassie keeps wiggling her feet and trying to get her movement back as much as she can. My husband seems happy with this plan for now as well. The rolling over of the left ankle is a constant problem but Cassie is correcting her foot more and more as she learns and strengthens the foot. I want to ask the team to get rid of the right SMO all together and I will ask the orthopedic specialist on April 20, 2009. Stay tuned.

In the areas of education and learning to read I have made some positive steps forward. We have met the teacher two times. Chris attended the meeting which was so helpful the two Chris's (Mr. Chris Moase and Chris Fruck) seem to understand and relate well to each other. The teacher has backed Cassie up on her Dolch words and is stressing five words a day. He backed up her reading level to books that Cassie is doing extremly well with and Cassie is coming around again with her phonics, trying to sound out and less guessing. The entire family is in the grove. Julia made rhymes and read with Cassie. Daddy did all her flash cards and read with Cassie and Mommy read with Cassie all weekend. Cassie was so pleased when she read a sentence herself we all freaked and praised her and made games and acted silly and she loved the attention. The school OT, learning resource teacher and I meet on April 24 and we asked the three EA's and teacher and principal to attend. I called the school board to find out about getting the neurodevelopmental pyschological testing and if it can get done in a timely manner (they have dragged their feet long enough). If it can not get done I will take the advice of my family friend physician and I will go to Toronto and pay for the testing myself or something similar to help diagnosing learning disability. I believe understanding Cassie's learning disability and having this test is the key to helping Cassie with her memory problems, her ability to retain and retrieve information and the correct learning strategies to use at school. Cassie got another zero on the spelling test. The teacher changed his strategy to hoping Cassie could figure out the first sound of the word (Thanks for doing that). I knew the words were hard because Julia could not spell them with out practice. Apparently they are the science words the children in grade 2 are doing science experiments. I will continue to advocate for Cassie. I can't really see the point in trying to memorize words every evening over and over again with no success. It frustrates us all. We started teaching Cassie how to find the word in the dictionary instead. Again only a mother who is trying to utilize her time well. this is just my opinion.
Stay tuned for the battle to get a timely neuropsychological test done. I hear you all saying your kind supportive words in my head. I am pleased to have the love and support of so many. One step at a time. One meeting at a time. I will not get cranky with any one who does not get it.

An inpsiring story about DJ Gregory "Walk On"

Born with Cerebral palsy, overcoming obstacles and making us proud. Cassie has come so far.
No more strollers, pony walkers, and now even time with out ankle foot orthosis. It is good to look back at how far we have come.Cassie then and Cassie now. What an inspiration to us all. Live your dreams just like other young people with disability.
My wonderful friend Wilma sent me a video of this man DJ Gregroy. Cassie watched it on my lap in awe.

Told by doctors he would never walk, Gregory initially got around by sliding with the use of his arms. As he grew, he gained the ability to walk with two canes, and then one. That one cane has been at his side for each step he has logged on the PGA TOUR in 2008

"This year has truly been a dream come true for me," Gregory said. "For the PGA TOUR to have given me the chance to live this dream of walking every hole of every week's tournament is incredible. From this, I just want people to know that if they have a dream, they need to chase it and never take no for an answer."

DJ Gregory an inspiring man who walked every hole of the 2008 PGA tour. He is an inspiration and reminds all children with cerebral palsy to live their dreams!!
http://vodpod.com/watch/1165857-walk-on-espn-video

Worries now we are home.

I had a discouraging week. Cassie returned to school and I guess she lost alot of what she had learned during the school year. Her teacher said she is now down 4 reading levels. I really wonder if Cassie was ever as high in the reading levels as they thought. Does a child learn to read and then totally forget how to read in five weeks? I have never seen Cassie read unassisted. Even level one books we read to her and she reads after. Cassie is now guessing and has forgotten how to sound things out. Anyway, I felt discouraged and judged for taking her out of school. Not sure if people really understand how I try to balance out what is best for my girl.
I called the principal who reassured me that it may be a transition back to school (sort of like after summer holidays). I got a call from Cassie's school OT who was concerned on the first week back as well. Thankfully she is willing to set up a meeting at the school. Cassie now has three different EA's each day. How can this be effective for a little girl with learning disability? She cant even remember their names. I feel discouraged because it seems alot of people at her school have forgotten alot of Cassie's strategies in place on her IEP. She is getting no time with her assistive technology (clicker 5 or star fall). The EA's are writing things down for Cassie instead of letting her print. No part of ther IEP said to scribe for my daughter she knows how to print. To make matters worse Cassie wont sleep in her own bed, keeps waking at night and has had at least three melt downs this week. She did not display this behavior at camp. She was a leader, she thrived in her program. She did not struggle so much. It pulls at a parents heart strings. I am feeling sorry for Julia always behaving and Cassie demanding attention inappropriately. The transition back to school has been hard for Casssie. The teacher gave her a spelling test, despite me asking him not to and all the words were guessed, not even close and looked like another language. a Big discouraging 0 for a special needs girl with a brain injury. I dont want this kind of testing to discourage my upbeat child. Chris came home upset about the spelling test after we had asked to test her differently or on easier words. Cassie tried to memorize the words all week every night but to no avail.
Friday, I talked to the Learning Resource teacher. Told her how I was feeling and told her I feel discouraged. She gave me a large book on phonics and Cassie can do two pages a night. She was very reassuring. I need to straighten up and not show Cassie I am discouraged. Cassie has enough to worry about on her own.
I think the issue is now I am back to work. I am tired and feeling the pressure. Cassie is not doing any of her exercises. My house is a mess. My dog is having terrible behaviors peeing on the bed, growling and grabbing food from the table. I keep questioning why I got him as I thought a dog would make me feel more relaxed.
Cassie's foot is tighting after being locked into her AFO's as I cant make a decision about weather she should wear them or not. AFO's from morning to night and Cassie cant move her foot again. The muscles are weakening with lack of use.
Today I took Cassie to a new Chiropracter in Ancaster. She was very happy with Cassie's fit body and she worked on the weak foot imobolizing the calcaneous and looked at the pelvis and leg length discrepancy. She made some nice recommedations. Cassie worked on a small trapoline in her bear feet that is good for weight bearing on her left side. I like the new chiropractor and so did Chris and most importantly so did Cassie. The new chiropractor rides horses and Cassie and her had alot to talk about. Cassie's therapeutic riding lessons start again next week.
Cassie is going to have incompletes on her report card because I took her out of school. The teacher said he will put "not enough information". Dont bother sending a report card home. I can't beleive how far back Cassie fell academically and I feel discouraged. Back to square one with trying to advocate at Cassie's school. I cant beleive our Public library has no tutoring or no reading programs for little girls. I can't find anything at the Hamilton school board. I called the Hamilton Learning Disablity association and the number was out of service. I am broke, tired and discouraged. Chris may be better off to deal with the school until I get strong again. I told him to go to some of the meetings. Get a Dad's perspective.
My email outlines the challenges of raising a special needs girl. I can see why some parents get overwhelmed. I am going to stay strong about my decision to take Cassie out of school. It was a once in a life time opportunity to go to Ability camp. Cassie will have learning disability that will plague her her entire academic career and life is always a balancing act but I feel camp opened our eyes and I felt support from the other mothers.
This email outlines the reason for my blog. Writing is healing for me. I feel better just getting it out and venting. I will go to church tommorrow another place I feel relaxed and thank God for my blessings. We are all healthy and love each other. Spring is here and my trailer will open soon. Things I love that make me feel relaxed and back to the drawing board trying to teach my girl to read.

Home Now and Keeping Active

We have arrived home and back to our busy lives. We need to be sure to keep Cassie exercising. Her home exercises will include stretching, back and leg exercises and exercises for her feet. Cassie needs daily exercise for her entire life because of her brain injury and cerebral palsy. Our best friends Jamie and Colleen gave the family a Wii. Cassie was very happy to be home and spent hours playing with the new game. Julia had perfected the games while we were away and set characters that look like everyone in our family. Thanks to our most wonderful best friends for this thoughtful gift. We will continue to help Cassie form a healthy way of life through exercise!! I think the entire family will get lots of fun out of this game. I am so glad to be home. I can't wait to have Jamie and Colleen over for a Wii party!!