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!!

Graduation Day

Cassie's medal from her conductors

Progress report

Cassie's overall body strength improved
Cassie is weight bearing better on her left leg
Cassie's 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
Her muscles loosened up by the end of the session
Her body posture improved
She has learned to stand up from the half-kneeling position without using her hands
She has learned to stand up from a low stool with clasped hands


Thank you to everyone who made this therapy possible for my hard working girl!!