Madi Moves

People ask all the time the changes that we see daily in Madison since having her SDR surgery. One big change has been her awareness for having to use the washroom. She had an understanding of what she had to do about a year ago, but never really caught on to the sensation and what to control. We are happy to report that she is now potty trained! She has been diaper free since Saturday with only one accident today. She is very proud of herself. She is doing pretty well at using the potty independently but needs help getting off and getting dressed. No diapers for swimming, for sleeping, for nothing! Conductive Ed camp has been a huge help with this – they have worked with her on it everyday since she started camp almost 4 weeks ago. Thanks Monika and team!

While Madi enjoyed her day at camp, Jack ran around like crazy at his My Gym class. Today’s skill he tried was a back tuck summersault! He giggled the whole time.

Madi had a great session with Jo-Anne this afternoon. She worked super hard and did her best to try each challenge. They climbed boxes to work on her external rotation, walked accross a tilting wooden board to work on shifting her weight while walking and walked up an inclined board to work on leaning forwards while walking. Thanks Jo-Anne!

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Madi is almost 3 months post op! She worked through 3 different therapies today and she got stronger as she went. Mommy was so proud!

Her morning started at conductive Ed camp. She loves all the games and learning that they do while working on her gross motor goals. She LOVED playing Guess Who with Monika, so Mommy added it to the shopping list for later in the day. 

After camp Madi went to Variety Village for some Physio with Stephanie. Madi did some work in her walker with weights attached to the back to help her slow down and think about proper steps.  They worked on independent walking for almost 45 minutes! Madi took anywhere between 6-20 steps, took a small break and then kept going. Stephanie and Mommy had some tears watching Madi go. She finished her session doing some sets on the total gym. 

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After a rest and play at home, Madi went to Grandview for Physio with Kate who did a re-assessment of post op goals. They went through some different exercises to assess where Madi is at and what the focus should be for the next 4 weeks. One activity that stood out the most to Mommy was Madi’s high kneeling. Madi could hold that position for only 2-3 seconds before surgery. Today she held it for over a minute and could have kept going but she got bored hahaha. She also was able to do some walking in tall kneeling which looked great!

It’s been a very long and busy couple of months, but days like today make every trip in the car, every appointment, every stretch and exercise completely 100% worth it!

Madi had a fun morning at camp. They played parachute games, went outside and Madi said she we proud of herself with her walking. She then headed to see her trainer Melissa at VV while Mommy had a meeting. They did different activities around the track. Hunted for Peppa Pig characters while walking and side stepping and got a great workout!

Once Madi picked up Jack, they headed to Nates house for a play in the backyard. Everyone was very excited to try out Nates new bouncy castle! They jumped and climbed and Madi did a great job of trying to go up the stairs herself. 

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Madi’s had a very busy couple of weeks followed by fun filled weekends, so she was kept home from camp this morning to lounge in bed and have some down time. It was much needed because after some rest and lunch she was ready to attack the rest of the day!

She did an awesome job at riding today where she rode Ooma backwards for the first time!

She then headed to Variety Village to meet with a new PT she will be working with – Claire. They did some work with sitting to standing tall, transitions from kneeling to standing, some walking and some active hamstring stretches. She did great!

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After some dinner and a play with her brother and Nate she headed to the pool for a swim with Ryan.

Mommy was thrilled to see Madi’s progress in the pool! She is now relaxing on her front and putting her whole face in to look around and blow bubbles. She also floated by herself for 2 seconds! The change in the smoothness of her transitions we are seeing at home we are also seeing in the pool. So great to see!

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Madi left the house this afternoon and told Jack several times…”sorry Jack! You can’t come to my play date – its girls only!”

Madi visited her friend Sofia this afternoon for a play and movie. They had so much fun together painting, watching a movie, snacking on lots of treats and playing hide and seek. 

Madi’s friend Sofia has her own Facebook page where she and her family are trying to raise awareness for SMA which Sofia lives with and is fighting for the cost of treatment in our country. To follow Sofia’s journey and learn more about SMA check out her page:

Sofia’s Facebook Page

Link to Sofia’s News Coverage

Jack had a great swim lesson this morning! He only screamed for 10 minutes and then relaxed and was able to do some floats and kicking and bobs! We think Elmo helped to save the day.

Madi & Jack then got packed up in the van and headed to Welland. As Madison said…”I’m excited to see the Mounties!”. They visited with friends Chris, Meg, Huddy and Jax who were in Welland visiting from out West. The kids had a great afternoon playing and enjoying a BBQ and it was awesome visiting and catching up on life. 

Madi enjoyed a beautiful day outside at camp. Her favourite activity of the morning was playing ringette. She is loving her time at March of Dimes!

Madi worked extremely hard this week, and with a bad sleep last night she was very tired today. She tried her best at Physio with Stephanie but needed many breaks. Stephanie was so great at keeping her going – they worked on walking, core work on the ball, using her scooter and walking with canes. For the first time Madi can now go forwards in her scooter! Hard work!

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Madi spent her evening at Station Creek Golf Course as an ambassador of Variety Village. The tournaments charity of choice was Variety Village so she walked around to meet people and helped Mommy give a little speech to thank everyone. Mommy and Madi have been talking a lot lately about the importance of helping others and giving back to communities that have been so important to us – so this was the perfect opportunity for Madison to help, for a place that is so special to our family.

Madi was up bright and early this morning to head to the eye doctors. Jack was also out the door early so the two helped each other with their shoes and gave hugs to say goodbye for the day.

When Madi got to the eye doctor she needed to get her drops in right away. She was a bit fussy about the drops so she opted for the spray instead. Madi then put on her shades and a hat and went with Mommy for a walk to the beach while the drops kicked in. 

Once her pupils were good and dilated, she went back. She did some of the same tests as she did on Tuesday like trying to read letters, describe colours, look at big and small shapes etc. It was confirmed Madi is far sighted and requires glasses. She of course picked out pink ones. She picks them up in a week. These glasses will be for a trial over the next month to see how she tolerates them, check in on the prescription and observe what she is needing them for. She will then get an altered script and can pick out another pair. We were unaware of the age recommendation for vision screening in Ontario – by the time a child is three they should have their vision checked. Another thing we learned today was there is a program that pays for glasses for children entering kindergarten. Madi is super excited about her glasses and thrilled they are pink. Here is a flyer that describes more about the program:

Today Madi spent the whole day at camp and had a great day. They built inukshuks, did some activities outside and she did some good walking with her pink canes. She was also a great helper and teacher to her friends in camp. 

After some down time at home, Madi headed to Grandview for Physio with Kate. They did some treadmill walking, transition activities, lots of core strength building and practiced some stand ups from the ground.

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For the past 3 weeks Madi has been taking 7 pills a day to help her kidney challenges. She is a super star and is taking her meds very well. She is also responding really well! 3 weeks of negative urine readings means everything is operating as it should. She will see her doctor in a few weeks to decide on next steps of she is in fact in remission.

Madi had an excellent morning at conductive Ed camp! She used her canes or walked independently all morning. They are learning about First Nations and Madi was so interested in making some herbal medicines and dream catchers while working hard on her exercises.

While Madi was at camp, Jack was at the Early Years Centre exploring paints, play dough and free play during toddler time!

After camp Madi headed to Variety Village to work out with her trainer Melissa. They worked hard for an hour walking around the track, climbing and practicing going up and down stairs. She was tired today but loves seeing Melissa and had a super fun time.

It was then time to head to the eye doctor. Mommy and Daddy had no big concerns, but wanted Madi to have her eyes checked before starting school in the fall. Mommy was so glad Madi was looked at because it was discovered that she is extremely far sighted and will most likely need glasses or to do some patching to strengthen some of the eye muscles. Madi has never complained or shown any real issues so it was interesting to find out. She will be going back later this week to do another assessment with drops and decide on glasses. Her only question to the doctor was if she could have pink glasses. 

After the eye doctor Madi picked up some flowers for Nana to celebrate. Nana has had some rough times over the past years. She has been “tethered” to a feed system in a PICC line for most of that time and needed help with her System for all of that time. Her progress since her recent hospital stay has gone very well. Nana’s determination lead to a wonderful event today. Dr Allard and her transplant team think that the TPN is a thing of the past. They are so confident that they removed her PICC today so Madi went over to celebrate!