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.....