Month: August 2017

Today was Madi’s last day of summer camp. She did a total of 7 weeks of camp this summer at March of Dimes. It was one of the best decisions we made to send her right after her surgery to help with her recovery. They worked every day on very specific goals, practiced lots of walking and had a blast doing different traditional summer camp activities. She is stronger, walking more and is potty trained – it was a wonderful summer of growth. 

Madi was sad to leave her instructors and friends but was excited to go check out her new school! Madi visited her JK classroom and met her classroom teacher and her support teacher. She LOVED her classroom! She played at the kitchen centre, found her hooks and cubby, checked out her washroom and then spent some time on the carpet looking at the calendar and other things with her teacher. It was a positive visit and everyone is excited for Tuesday!

After some down time at home, Madi went to work with Jo-Anne and to show off her hard work to Daddy who watched her for the first time. Daddy was super impressed!

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Madison had a fun time at CE camp today. She did lots of walking and crafting. She made and painted a parrot for pirate week!

Madison and Nana then spent the afternoon together doing different things.

They made cupcakes, made a thank you card for Melissa, had some lunch and had some quiet time. Then they went to see Melissa at Variety Village for a workout and their last summer class together. Thanks so much Melissa for working Madi so hard this summer- she had a blast!

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Jack had a great day with his buddy Owen at Jackie’s! They made their own crafts which was super cute! 

Madison and Monika were thrilled to report that Madison achieved 100 independent steps at CE camp this morning! Woo hoo!

After camp Madison spent her afternoon with Janine and Suzanne. They had lunch and did crafts and played with her baby doll. They also went to visit Great Grandma Gregoire and Madi jumped all over her bed and showed her cane walking.

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​While Madi was visiting, Mommy & Daddy had a meeting at Madi’s new school. It was extremely positive and everyone is on board with the plan for next week! Everyone was updated on how her surgery went, the diagnosis of nephrotic syndrome, glasses, potty trained, new equipment, new mobility – lots has changed since the last meeting in April. We spoke about the importance of this window of opportunity that Madison has in terms of the surgery and the theory behind neuroplacticity and learning new movement patterns and the importance of working on correct form and gait even thought walking with her canes is slower. They are in support of her using her canes indoors and Walker only outside. We are trying to phase her Walker out. They will offer her lots of transition time and she will have an EA for all of the transitions of the day and all self help tasks like the washroom and getting ready to go outside. Their Ea will follow a schedule that changes each week as the needs of the students in the school change but will be with Madison for the first few days to see how things go. 

Later in the day Madi went for a session at Neurochangers. She loves her facilitator Bri – the two talked about Halloween costumes and Thomas the Train! That was then followed by a massage with Shannon. She was super silly but was relaxed and Shannon could do different releases which was new. 

 She was exhausted at the end of the day but made more gains!

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Mommy had her first day back to work today after almost 2 years! Daddy was on his own this morning getting the two crazies dressed, fed, hair done and out the door on time. So much thanks is owed to so many friends and family for helping these past two years, but that’s going to be saved for another day when things settle and arnt so emotional.

Daddy dropped Jack at daycare and then drove Madi to CE camp. The theme this week is pirates! Madi had so much fun decorating a banana like a pirate and she did awesome independent walking – 48 steps!!

Nana picked up Madi from camp and then went home for some lunch. She visited with Papa over lunch and told him all about camp. Nana and Madi then went to a special craft place called Crockadoodle to do some painting!

Madi chose a cupcake shaped jar to paint that she could later put hair clips or elastics in. She had a blast painting!

On their way home, Nana took Madison to her new school to check out the playground. To say she was excited is an understatement. Madi told Nana that she was so excited and that today was the best day ever because she got to see her school. Thanks for the great day Nana!

Today was a glorious day! Madison & Jack went to celebrate with their SDR community at the 2nd Annual Picnic! Madi always LOVES being around her friends that use walkers or canes or wheelchairs to get around like her, and to be around others who had the same surgery as her is always special. We chatted with families who are a few years post op, families who are about to leave for St Louis and families who are researching and deciding if the surgery is right for their child. No matter the point in journey of the families there, everyone was there to celebrate their amazing kids! They did yoga, got their faces painted, ate cotton candy, participated in a celebration race, played in the playground, watched balloon animals being made and took a group picture together. It was a great afternoon! 

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As the end of summer nears, Madi took a break from her crazy schedule and headed downtown for some shopping with Aunt Emily. 

Madi was on the hunt for her JK backpack! Most kids pick a bag with their favourite character on it and dont worry so much about size, straps etc. but Madi wants to be able to wear her backpack just like her friends no matter if she is in her walker or canes or holding someone’s hand – so Aunt Emily scoped out some good stores and Madi found a bag! It’s super cute, stylish & is functional. Thanks Aunt Emily!

Madi was excited to show Jack her “robot walking” this morning. The two watched Thomas as Madi marched away.

27 minutes, 1080 steps, 520 stairs!

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After a great session, Madi headed to VV to work with Stephanie! They did lots and lots of walking! Madi walked all the way from Stephanie’s office to court one in the field house, needing help only two times! The most exciting part of Physio today was watching another first. Madi was able to squat down, pick up a ball, stand back up and then throw it! She was super proud of herself! Thanks Cathy and Mya for all the cheering and support! 

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Madi & Jack had a great afternoon with Nana! Lunch, baking cookies, books, colouring & a special shirt for JK! Thanks Nana!

Madi has been learning about different vegetables all week at camp. Today she loved doing the calendar and learning about peas. She did lots of walking and transitioned for the first time from independent walking to her canes. 

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Madi spent the rest of her day with her Aunts – Janine and Suzanne! They had lunch and played with Buddy and then headed to Jo-Anne’s where Madi was so proud to show her Aunts all her hard work.

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Madi was sad to see Uncle Barker leave this morning but loved her visit with him! She proudly walked him to the door with her new purple canes to say goodbye. Thanks for the visit and the Muskoka Bear Wear Uncle Barker!

Madi LOVED her first session at Neurochangers today on the gait trainer! They taught her how to stand on the foot plates with straight posture, worked on walking and climbing stairs. She worked in passive mode at the start, which does the steps for her. She then transitioned to passive/active mode which required her to initiate the power and movement and then the machine followed through. She was on the machine for just over 35 minutes and did 1,004 steps and 460 stairs! 

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​She then headed to see Shannon for a massage after all her hard work. Her glutes and hamstring were incredibly tight on her left side from wearing her cast for the last week, dealing with the weight and off balance walking pattern. 

Madi was most excited for the next part of her day…getting her cast off!!! She was brave and actually didn’t mind the cast saw. She said it tickled and felt funny. Eric was super pleased with the results of the serial casting. One week of casting and her results were awesome! She gained 10 degrees on her left foot. Her right and left foot now measure roughly the same. 

Madi was  excited to show Jack that her cast was gone. She picked him up from daycare and headed to Grandview. Madi & Jack had a joint Physio session. Jack had his exit assessment (now that he’s 18 months) from the treatment he received as an infant for his torticollis and Madi had an exit assessment from her post op therapy blocks and will be on break from Grandview until October. Kate was also super pleased with Madisons measurements. Jack still has some rotation issues in his neck that we will try some stretching for and work out the tightness through active stretching and massage. If he is still having some trouble in a few months he will be referred to a clinic at Sick Kids. 

Madi and Claire worked hard this morning in Physio. Something new that they attempted was walking through an obstacle course. Madi had to navigate and decide when to step over things or go around.

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After Physio, Madi headed to camp. She did Lots and Lots of walking and was excited to tell Mommy all about cabbages which they learnt about. 

Madi spent her afternoon at riding. It was her last class of the summer. She attempted trotting today which was fun but difficult. She is learning to hold her core, neck and head tight and still to have control. 

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We love a good deal! We found these at Dollarama in their new fitness section! They have mats, Physio balls…all kinds of stuff for under $3!

Madison can do planks and mountain climbers with them for core strength.

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Madi was also thrilled that her new canes arrived today! She will have a pair that stay in her classroom and a pair that travel with her.

Jack LOVES his sister so much he tries to do everything like her…Mr Potato Head glasses and a good book.