Month: June 2016

The whole family ventured to Milton today for an SDR Family Picnic!

Selective Dorsal Rhizotomy (SDR) is the only surgical procedure that can provide permanent reduction of spasticity in CP. The surgery is not available in Ontario. The families at the picnic today were at different points of the SDR journey. Some already had the surgery, some are waiting for their surgery date and some (like us) are in the research stage. St. Louis is where all of the families have had their surgery. 

Madison loved hanging out with her friends and she also made new friends. She loved seeing so many walkers all over and had lots of fun at the Splash pad and in the park. After lunch there was a group picture with all the families at the picnic. Madison had lots of fun and Mommy and Daddy got some good questions answered. SDR surgery is a real possibility for Madison. More needs to be looked into so stay tuned.

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​At the end of a long day, Mommy & Daddy had lots of work to do around the house so Papa & Nana stopped by for playtime in the basement, dinner, bath and then bed. Thank you for the help!

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Hi! I’m Jack! I’m now 4 months old, I weigh 17 pounds, I sleep through the night and I’ve tried my first cereal! Mmmmm! I also LOVE my big sister Madison! She teaches me how to put my soother in my mouth and she makes me smile and laugh. I love going with her to her different therapies and I cheer her on. She works really hard and I am really proud of her.

Something else that you may not know about me is I have congenital torticollis.

Congenital muscular torticollis is a condition in which a babies neck muscle is shortened causing the neck to twist. Congenital means present at birth and torticollis means twisted neck. The condition is sometimes called wryneck.

My Mommy and Daddy noticed it when I was about 8 weeks old. They had me assessed right away and I now get to go to Grandview with Madison for my own appointments. I do physio with Kate every few weeks. She teaches Mommy and Daddy lots of stretches that they do with me at home. I also go to get a massage once a week with Madison’s friend Shannon and I go to the chiropractor once a week with Mommys friend Sarah. I’m already getting much stronger and my neck is starting to get straighter. I have to keep up my daily stretches and hopefully by the time I’m one it will be resolved. 

Because I have favoured looking to my left, my head has a flat spot. To help my head re-shape I wear a Tortle cap when I lie down or sleep. It helps my head stay to the centre or the right. I don’t like wearing it in my car seat but I like sleeping with it. My Mommy and Daddy want to thank everyone who has helped out with all the extra appointments on top of Madi’s stuff – we all greatly appreciate the help!

Madison’s favourite activity at school this morning was making a sheep mask to finish off their farm week at school. As soon as school was done and Madi was at Nana’s she asked Nana to help her bake cookies and make a pink heart craft with sparkles! Nana was able to get both activities in before Madi’s nap!

Madi spent some time with Stephanie this afternoon. Madison was still very tired from her trip to the farm yesterday, so it was a difficult session for her. Stephanie was great at trying to motivate Madison and keep her going, but today was one of those rare days for Madison that she was not wanting to participate in everything. She loved walking on the treadmill and doing a puzzle to work on her fine motor skills. She also practiced using her canes that she borrowed from March of Dimes.

After dinner, Madison asked if she could do a painting for her teacher Calene. Madison ended up painting for almost an hour. She sat quietly, sometimes singing to herself and painted away on many different pieces of paper. She is loving being an artist! Painting seems to be very calming and therapeutic for her.

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Madison had an exciting morning with her teachers and classmates. To celebrate the end of a great school year, they all visited Riverdale Farm. Madison loved seeing all the piggies, chickens and the baby goats. Madison did an amazing job walking all over the farm in her walker. She even went down the steep path all by herself! It was an amazing thing to celebrate and reflect on thinking back to the beginning of the school year when Madison was not using her walker. 

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We are grateful for all of the opportunities Madison has had to continue to progress and achieve great things, and we are always looking for ways to show appreciation and give back.

Last September Madison shared her story with the March of Dimes mail out campaign. Her journey was shared with donors from all over Canada to encourage people to continue donating to such an amazing organization and program- conductive education that she accesses weekly. Today we were told that Madison’s story helped to raise over $80,000! We were thrilled to hear what an impact her determination and beautiful smile had on so many people. They have asked Madison to be a part of another mail out campaign to update all the donors on all the progress she has made over this past year with the help of conductive education and her lead conductor Monika. She had an exciting class with Monika today!

Madison ended her day with a play date with Ruby! Mommy had a synchro meeting, so Ruby and Madi played outside at Variety Village and watched some soccer.

Madison had a great session with Joe today. She let go of the reins several times to try and stay seated upright while he was walking. She also did a whole bunch of sit ups! She layed back on the saddle and then without using her hands, tried to sit up using her tummy and leg muscles – she is going to have a 6 pack soon! For those interested in seeing Madison ride – her last class is on June 22nd and then she will be on break until the summer session begins.

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After her ride on Joe, Madison visited Shannon for a massage. The right side of her body responded nicely, but her left side is still quite tight and locked up.
Madison finished her day with a play at Nana and Papa’s. Madison, Nate and Jack kept Nana busy while everyone else helped Papa move things around in the basement to get organized and ready for new furniture etc. to be moved in. The kids did a great job supervising all the moving of boxes while eating their pizza. They loved checking out the massive ice blocks that came out of the chest freezer that was moved. 

Madison met a new friend at school today! Madi and her buddy Ben have only seen each other through photos and video from both their Mommy’s. Ben was touring her school as a potential for next school year so they finally met today – and Madison was thrilled! They did a puzzle activity together spelling their names and it was all Madi talked about for the rest of the day. Once the summer comes we are hoping for lots of play dates!

Madison spent her afternoon at Grandview for 2 hours for both PT and OT. She did great breath control training and really projected her voice. She did various fine motor activities to help strengthen her hands and to work on controlling her tone.

Her day ended with a swim class with Ryan. They worked on pushing off the wall on her back and holding her back floats much longer. Once she can stay on her back longer he would like to start teaching her double arm back crawl.

After swimming, Madi’s buddy Ruby gave her one of her favourite hats from when she was little. It’s pink sequenced with a cat face on it – Madison LOVES it! She wanted to sleep with it on tonight hahaha. Thanks Ruby!

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Madison did a fantastic job at pre-school today. She wore her Theratog shorts for most of the morning and was determined to try walking everywhere herself. At quiet time she used some spelling puzzles. The words she worked on were “dog” and “fish”. 

After school Madison hung out with Grandma, Grandpa and Stanley. She checked on her garden, played ball with Stanley and ate some Estonian sausages for lunch. She loved the fresh air in the convertible on the way home – so much that she fell asleep.

Madison and her buddy Emily had lots of fun together tonight. They did lots of long sitting stretches in her gaitors and practiced lots of walking. Madison loves being outside and it is so nice to see her do some of her therapy out there. 

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Madison spent the first part of her morning with Nana & Papa visiting with the Blue Jays in the backyard. One of her favourite things to do at their house is play with their play food. Her favourite piece is the chocolate chip cookie that she was determined to feed to Jack.

Madison then went for brunch with Grandma and Grandpa to celebrate Auntie Em’s birthday that is this Tuesday. She had her favourite chicken and loved helping Auntie Em open her gifts. 

After brunch she visited with Dylan and the two went for a walk by Sugar Beach and watched the water fountain. They traded their “wheels” for a few minutes and Madi tried Dylan’s scooter – she loved it!!

Madison spent the rest of her day playing with Jack at the house. She also scored big again at another garage sale and got herself an exercise bike to help strengthen her leg muscles.

Madison has been having some pretty intense muscle spasms lately. We think it is a combination of her spasticity, a growth spurt and the outside heat. She went to see Shannon today for a massage. She loved it! We were so proud of her that she was able to tell Shannon what part of her legs hurt. She relaxed and let Shannon work her magic for 30 minutes. Her walking looked significantly different after the massage because her hip, quad and hamstring muscles were very tight and Shannon was able to loosen them up.

Madi had a nice visit with Pam and helped her water her flowers. She also scored at a garage sale today. She got a little floor table she used today for her snack and colouring while she did some long sitting.

Madi and Nate had a bbq dinner date in the backyard. They had a great play and lots to eat!

Madison had an awesome session with Stephanie today. She was a bit tired with it being a Friday afternoon, but she worked hard and was so determined to walk. Stephanie had Madison wear a pair of Theratog shorts which help with  neuromuscular and postural training. Madison has a borrowed pair from Stephanie that she has been using at school. The ones she wore today were much thinner but did an excellent job helping Madison with her walking by keeping her legs seperated and supported. Her walking was noticeably better when wearing the shorts. 

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Madison went out for dinner and dessert to celebrate Daddy’s birthday. Papa gave Daddy a card that Madison and Nate loved to play with! They also loved their ice cream!

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