Month: August 2018

Madison had a blast at conductive ed today – she got to dress up like Moana and do all sorts of activities around the theme of Moana while working on her standing, walking while carrying things and continuing to build strength!

This week with Mommy back at work and Madi with one more week left of summer, she is doing her own mini intensive from now until Thursday. Each day she is doing two therapies consisting of conductive ed, physio at Grandview or Variety Village and work with Jo-Anne at Smile Therapy for Kids. Thank you to all of our family who are helping Madison with her week of work while Mommy is back at work.

Today Madison had some fun being Belle the princess at March of Dimes while walking, practicing standing up and working hard for her 1:1 class. Thank you Fruzsi!

After some lunch she headed to Smile therapy where she did lots of great walking and working on her balance and weight shifting when taking steps. Thanks Jo-Anne!

After dinner she wanted to practice more walking while sneaking up on her brother to tickle him.

Thank you for following Madison’s journey!
She would not be progressing and doing so well without all of your words of encouragement and everyone who has supported her over the past few years.

Here is Madi working on her falling and standing up, something that she wasn’t able to do two weeks ago before her PERCS surgery.

Her rehab program continues on – we are making a big push from now until Christmas to give her as much opportunity to access all her therapists and programs as much as possible. We will be able to do so thanks to the support of The Mike Gregoire Memorial Golf Tournament.
Golf Website

Registration  for golfers and dinner guests is open!

We are in our final few weeks planning towards the golf tournament to help Madison with her post op rehab and we are looking for family and friends who would be interested in helping us out by donating items for the silent auction – big or small, we would appreciate any support.

Madison is working hard, but is finding time for some fun before back to school!

Today was Madison’s last day of conductive education camp at March of Dimes. She absolutely loves going there for camp and spending the day with their amazing staff and a great group of friends. Madison’s rehab has been going very well and her camp has been a big reason why. They challenge her in a fun and supportive way. She loves all the activities and it’s helped motivate her to keep working hard. She will be going back next week for some 1:1 sessions and then will be participating in their fall programs once school starts. Thanks for a great summer March of Dimes!

Madison was super excited for the theme at camp today…. princess dress up! She packed 6 different dresses because she couldn’t decide. She ended up choosing Ariel and later told us she hates that she can’t swim right now while her legs are healing, so she wanted to pretend to swim. Being at March of Dimes Camp has been an amazing way for Madison to get back on her feet and work hard, while having so much fun!

After camp, Madison headed home for some quiet time before heading to the basement for some more work. Claire was over today to do some work on Madi’s walking, balance, getting up from the floor, core work and some stairs. Madison was excited to show Claire the newest thing she has been working on… standing up from the floor! Every time she did it, it got easier and easier for her and she was thrilled, laughed, kept asking to do it again and again and wanted to show Jack. It was such a powerful and rewarding moment to witness Madison being successful with this skill.

It’s 11 days after PERCS and she’s up from the floor and walking! Madison has never been able to do this…she has attempted this skill hundreds of times over the past two years and today was the day it clicked for her.

In that moment all I could think about was her team of people….her specialists/therapists/cheerleaders/family… a group of 6 who have been with her along the way…they have supported us, challenged her and taught her everything needed to be able to rise up from the floor today and look Jack straight in the eyes and laugh. We are so grateful for the team of people Madison gets to work with each week. I don’t know where we would be without them.

After the kids went to bed, the first thing James and I did was sit down on the couch and talk about our amazing Madison…the second thing we did was email her group of 6… her amazing therapists, to thank them and share this video from today.

Madison is now 10 days post op from PERCS. She is feeling good and is starting to get more comfortable with her movements. She at times is happy and excited by her “new legs” as she calls them, and attempts things that are coming as a surprise to us. Yesterday, she spent almost 30 minutes trying to stand up from the floor – something she has never been able to do – and with some aids to help her, she did it! and she was thrilled!

 

10 days post op also meant taking her bandages off and having a shower for the first time! Things are looking good.

Madi spent her day at the 3rd Annual Ontario SDR picnic! It’s always such a blessing getting together with other families walking the same path as ours. The theme was super heroes – very fitting for all the kiddos there today. Madi loved playing with her friends on the playground and decorating her cape!

Madi enjoyed a great day at camp. She did lots of walking and loved the pictures she created. She also loved seeing her brother at pickup and was excited to walk out of the building with him.

After some relaxation at home, Claire came by the house for another awesome PT session. Madi has shown improvement even since yesterday and she started using her canes again!

Madi took a day off camp today to catch up on some appointments and to get started on some 1:1 physio time.

First up was a visit to her nephrologist Dr Wong to go over how her surgery went and to see how she’s responded… no protein spilling and clear pee makes for a great visit!

Madi then went to Grandview to see her physio Kate. They haven’t worked with each other since the end of April so it was great to catch up and Kate was very happy with how Madi was doing. They played lots of fun games while working on sit to stand, side stepping, wiggling her feet and toes and some walking!

After a nice lunch and some quiet time, another PT’s of Madi’s, Claire came to the house to do some work. We have scheduled lots of 1:1 stuff daily over the next few weeks but with lots of breaks and smaller bursts to help her gradually work back to where she was before surgery and build endurance. They did lots of great work together and had some good laughs! It’s so nice seeing Madi enjoying her new legs.

Madi had another great day at camp and already was able to do more then yesterday! She did lots of standing and walking in her walker and today she attempted walking up and over wooden boxes. She also decided to try and walk out to the car after camp all by herself, and after a few rests she made it all the way to the car. Slow and Steady!

5 days after PERCS looked really good!

Madi was happy to be back at camp today at March of Dimes, especially because a bunch of her friends are there this week too! She was able to manage a full 6 hour day with lots of standing and walking practice. With about an hour to go, her legs were starting to get sore so she needed some Tylenol, but other then that she was great!

Once she got home she wanted to practice with her “new legs”. We couldn’t believe it – we for sure thought she would have been too exhausted, but she went for it! Madi is only 4 days post op and she continues to blow us away with her determination and inner strength.