We learned 5 years ago when Madison was born that there is no guide book or ‘How To’ guide for having a child with CP. You just have to do your research, network, have the right people around you and advocate for what you think is best for your kid.
And just as you think you are in a rhythm and have a clear path… BAM!!! …Detour.
We learnt about a week ago after a routine hip X-ray that Madison has hip subluxation (migration). Her right hip has migrated 38% and left hip is 27% migratesd. A subluxation is basically defined as “a partial dislocation”. It can be no less painful than a full dislocation, but the two bones that form the joint are still partially in contact with each other. Unfortunately this can be common in kids with CP. Madison is currently not in any pain that we know of. She has been referred to an Orthopaedic surgeon at Sick Kids, Dr Camp. Madison is currently on his wait list which is about 8 months until her first appointment.
Instead of sitting around and waiting to see if surgery is needed, we are going to try a few new things and change our therapy focus a bit. We fought for Madison’s first two surgeries to happen and wanted them so badly for her. Hip surgery is 100% something we do not want. Double hip reconstruction is extremely painful, has many complications and long term impacts that we want to try and avoid. Many people feel that there is nothing we can do…that it is what it is. A small few have some ideas of how we can prevent further migration from happening or make an inprovement. We are going to try some daily strengthening and stretches, use compression shorts during therapy, trial a night pelvis brace when she sleeps and focus on good positioning. We have another X-ray planned in about 5 months and we will see if our new focus and plan have any effect. It’s important for us to re-evaluate where Madison is at and make some new goals and implement things before seeing Dr Camp. We have already started some exercises, stretching and new positions at school thanks to the guidance of her friends at March of Dimes, Smile Therapy for Kids and Paediatric Physiotherapy Associates. With the winter on its way we have also decided to bring back a focus on therapy at home. Madison will be going to Texas in a few short weeks to work with Mike Poole to help us ‘re-set’ and make some new goals for walking, hip health & strength which we can manage through a new home program. We want to do everything we can to put off surgery. We are hoping with this multi pronged approach to Madison’s current health detour we will be able to get back on track. Wish us luck!
It’s been a busy week full of highs and lows. Here are a few highlights.
Lots of steps at Neurochangers
Variety Village Gala
Working on her walking at Smile Therapy for Kids!
Volunteering at the Ontario Internationally Educated Bridging Program, Department of Rehab Medicine -University of Toronto
Swimming at Variety Village
Madison had a fun day celebrating Halloween at school. Her and Nate went to their first school dance together!
Jack had a fun day at Jackie’s and had a much needed nap with his tools to have some energy for the evening festivities.
Happy Halloween from this crazy crew!
The last few days have been a blast for Madison. She had her Sparks Halloween party last night and trick or treating today at March of Dimes! They went for a walk around the building to all the offices and she collected a bag full of candy and had so much fun dressing up with her friends! Even her volunteers at horseback riding today were dressed up – such a fun day!
Madi and Jack had a busy morning consisting of dance class, Smile Therapy and gym class.
Once all their exercising was done, it was time to get into the Halloween spirit! The kids stuffed loot bags for their friends for Wednesday and then carved their pumpkins with Aunt Emily!
Madi and Jack had a blast with their buddy Ben at the Starlight Halloween party tonight! Thank you Starlight!