"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.....