Day 1,168: Thanks Texas!

Madison is home from Texas. She has mixed feelings about it. She was very sad to leave but also really missed her brother and her pets. It was very sweet seeing her and Jack reunite – they spent the whole day together and didn’t leave each others sides.

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We are so grateful that Madison could go see Mike and the team at Monkey Business Therapy. We want to say a big thank you to everyone who supported the Mike Gregoire Memoial Golf tournament and the organizing committee for all their support and providing Madison with another amazing therapy opportunity.

Madison had her best session to date with Mike. She worked hard and did everything she was asked. She used her single point canes more on this trip than her walker which was exciting. It was so amazing to be able to just focus on her therapy everyday instead of all the other parts of our typical days like school and work. Everyday she ate well, got lots of sleep, stretched, strengthened and practiced her walking. We have a new home program that will help her continue to build strength, balance, endurance and pay attention to her hip issues. She will continue using her AFO’s daily and use her SMO’s during therapy. We are working on increasing her walking speed/rate and learning to walk with her arms down by her side. She will do more independent walking when out and about with no one behind her while wearing her ski helmet or bike helmet to protect her precious head. She will be starting a new vitamin regime and increasing massage on her hamstrings. Her stretching routine has been working well for her and will stay the same. We have some new equipment ideas, will be doing the program 3-4 days a week and then revisiting Mike and his team again in July.

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Day 1,167: Texas!

Madison is in Texas!

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She is working with Mike Poole and his newly formed team at Monkey Business Therapy. Our purpose for this trip is to pause, reflect and reset our goals and how we spend our time at home with a focus on hip health and walking. We are also going to look at other options for support to be able to move away from AFO’s and continue to build strength. This recovery from PERCS has been much more difficult then her recovery from SDR. We are hoping to come away from this with fresh ideas and a home program design that will help build strength and push off the discussion of hip surgery.

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Madi had a great first day – she worked hard! Her day started with a big breakfast followed by a visit to the gym where we are staying. She had a great hour long stretch and then checked out the property.

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She really liked the centre Mike was at and did a great job!

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Day 1,166: PA Day Fun!

Today was a PA Day for Madison. She was really looking forward to it because of all the fun things planned.

First up was a fun morning at March of Dimes taking care of babies!

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Madison was thrilled to have Tiffany pick her up when she was done. They went to McDonalds for lunch and then spent the afternoon at the Science Centre! Thanks Tiffany!

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Day 1,165: Detour

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.

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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.

 

 

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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!

Day 1,164: Crazy Times

It’s been a busy week full of highs and lows. Here are a few highlights.

Lots of steps at Neurochangers

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Variety Village Gala

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Working on her walking at Smile Therapy for Kids!

Volunteering at the Ontario Internationally Educated Bridging Program, Department of Rehab Medicine -University of Toronto

 

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Swimming at Variety Village

Day 1,163: Halloween 2018!

Madison had a fun day celebrating Halloween at school. Her and Nate went to their first school dance together!

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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.

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Happy Halloween from this crazy crew!

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