Madison had an amazing day and we are so proud of her!
She had her first day of skiing with the CADS program at Brimacombe. Madi’s friend Taylor has been involved with the program for years so Madison was thrilled that she could join something that Taylor loves. Madison’s instructor and volunteers were amazing! They were patient, caring and lots of fun. They did a great job figuring out the equipment and how to personalize it for Madison. She was on the hill for 90 minutes! Madison had the option to stop or take breaks and she just kept going – she didn’t want to stop! She worked so hard and was exhausted but loved it!
Jack and Aunt Emily had a great morning together building his new race car track and playing in the basement. He was sad to miss skiing but had a blast with Aunt Emily and will join Madi on the hill next week.
After some lunch and some down time, Madison and Jack headed to Variety Village for a swim! Madison worked with Ryan today and Janet from Swimming Canada who was able to get an update on the program and see how Madison and all the other swimmers have been progressing.
Madison and Jack had a busy weekend but it was great to keep active during the cold weather by doing things as a family and trying new things!
Quick kidney update….second day of negative testing so she is on her way to weaning off the steroids!!! Lower dose starts tomorrow!
Madison had an awesome morning at March of Dimes! It was PJ day and they made a bear’s den for all their stuffy bear friends. Madison did lots of great walking and standing up from the floor.
Later this afternoon, Madison had her first visit with Dr Camp. He is an orthopaedic surgeon at Sick Kids Hospital. He has quite the wait list there so we are very thankful he does satellite clinics once a month at Grandview which meant a short wait list! He was lovely to talk to. He asked a lot of questions about Madison’s past surgeries and had her walk for him and show him some different positioning. He was very impressed with her ranges and her skills with her canes. He discussed with us the typical issues kids with cp have with their hips due to the high tone and the forcing of muscles and joints not cooperating with each other which usually ends in dislocation. He commended us for being proactive with the removal of spasticity by having SDR. He described Madison’s hip issues as most likely occurring due to low tone/muscle weakness during a time when she was rapidly going through a growth spurt. He will examine pre and post X-rays further to see if he sees any other trends. He is not concerned with her migration percentages at this time because of how mobile she is and how she now continues to build strength and no longer has spasticity. He advised us to continue doing what we are doing and agreed with our strengthening approach to her hips. He encouraged good positioning, long leg stretching and walking as much as possible. She will repeat her X-rays at 6 months and then again at 12 months and he will follow her through her PT at Grandview. He feels that in 2 years time he will have enough information to be able to predict what her hip health will look like long term and then go from there. He is not concerned as he is also predicting very slow change at this point. We will review again once the next round of X-rays are complete. If you have a child with CP who does not have regular hip X-rays, I encourage you to advocate to your doctor for them. They are apart of the Ontario protocol for hip health and we would have had no clue about Madison’s hip issues unless we had the routine X-ray. He called her hip migration “silent” as she has no pain or anything happening to lead us to knowing about the change. We will continue to be strict about her positioning and keeping her on her feet. We will also continue with her strength program and daily stretches.
Today was officially whacky Wednesday…. so much going on… and of course, Madi was a champ.
Madison’s day started with an appointment with her Nephrologist Dr Wong. Her Nephrotic Syndrome is back in full force sadly. The last few days have been some of her highest test readings but the good news is it was much lower this morning. She has to be on her steroids for at least the next month and will be checking back at the hospital in a few weeks.
Once she was done at the hospital she went straight to school. Madison was happy to report she had library today and guided reading with her teacher – she loves school days full of books and reading!
After school Nana picked her up and they headed to Grandview to work with Kate. Madison started a new PT block that will go every week until March. Kate did some measurements to see how Madison is doing and they also did some walking on the treadmill, stretches and strengthening. Kate was very happy with the measurements Madison has maintained, particularly with her ankles.
After a great PT session Madison headed home for some dinner and then had dance class! Madison has changed her dance day from Saturday’s now that her weekend activities/therapies have changed. She really enjoyed her class and loved her new teacher.
Madison is very proud of how well she is doing at school, especially with her reading. She loves getting reading homework!
Tonight Madison had her enrolment ceremony at Sparks. She was thrilled Jack went to watch her get her new badges. She also finalized her last cookie order of the year…. she has 48 boxes of the traditional chocolate and vanilla cookies to sell and is now taking orders!
Madi was also thrilled to find out about her first Sparks sleepover coming up… twenty five 5-7 year old girls for a movie and sleepover at the local church! It will be great practice for when they all go camping in the spring.
Madison had quite the busy day.
It started off relaxing with a stretch session at home and then a trip to see Shannon for a massage.
She then went home to meet up with Claire for a physio session. They did good work together practicing the stairs, squats, side leg lifts to build hip strength and some walking.
After her physio session, Madi headed to the mall. She was super excited to go to her favourite store Justice! She shopped with her Christmas gift card from Aunt Nadia & Uncle Mark. She picked out some hair accessories and a water bottle.
While she was shopping, Mommy heard back from Madi’s Nephrologist. Madison has been battling a cold this last week, has become a bit swollen and has low energy. We started testing her urine to see if she was spilling protein and the tests have been inconsistent. Her doctor asked us to swing by the hospital to do his own test. Madi left the mall and went to the hospital. After a quick test she headed home to play with her brother. Later on her doctor called back and confirmed the positive test – Madison’s nephrotic syndrome has relapsed after over a year of being in remission. She starts a round of steroids tomorrow and will go back to the hospital Wednesday. Her doctor dosed it high with the hopes she can rebound quick. Fingers crossed!
Madison had a great 2018 full of new milestones, new activities, a surgery, lots of family time and new friends. She worked hard and continued to progress throughout the year. She maintained a schedule comprised of therapy, family time, school, sports, ambassador & volunteer opportunities and community activities. We are so proud of the balanced young lady she has become.
Madison understands that goals are something you keep in your head and work towards to try and get better at something. Her 2019 goals she has told us about are: swim more, become an artist, learn new sports, read more, stretch daily (Mommy’s goal lol) and do more strength work at home.
We would like to thank all of our family, co workers and friends who supported us through 2018 and all that we were able to do for Madison. She continues to thrive and we can’t wait to see what 2019 has in store.
Here’s how Madison has spent her first few days of 2019!
Whats new coming up….
-skiing, more play dates, strength & conditioning classes @ Variety Village & OT
We wish you a happy and healthy 2019!