Day 538: Catching Up In Weight! 

Madi and Jack started their day by going back to Grandview. Jack had a quick stretching session with Kate which is always a scream fest – but sooo good for his neck muscles. Madison’s referral for Botox went through and she had a check in this morning to assess her muscle catchments, range, extension etc. The good news is her catchments have stayed consistent and her range after the catchment can still happen. Her hamstrings are still her biggest enemy. They showed a few degrees less today with range. It’s a tricky battle between the Botox being gone now, a growth spurt and spastic muscles. Her third round of Botox has been booked for the end of September and a new block of therapy starting shortly after. They will also do another set of hip X-rays to keep on track with monitoring once a year to look for migration/change. 

After a great assessment at Grandview, Madi and Jack hung out at Nana’s while Mommy ran errands for Brazil!

March of Dimes posted some great pictures of Madison from their summer camp this summer. Madison attended 4 weeks of camp and loved it!

Before the end of the day, both kids had an appointment with Dr. Aref their pediatrician. Jack had his ear checked and all his draining issues have cleared up. He now weighs 21 pounds. Madison has grown 2 inches and weighs 29 pounds! It’s crazy to think that they are about 2.5 years apart in age and only 8 pounds apart in weight. Madi had not been to see him in a while so we had lots to discuss: digestive issues and upping her laxative and introducing flax seed and fish oil, magnesium and more fluid intake throughout the day. We also discussed SDR and he has sent a referral to a neurosurgeon to see if they will even see Madison. Madison will also be referred to an ENT to assess how her overflow of tone is affecting her vocal coards and “creekiness” sound in her voice. 

Day 536: Madi & Jack at Grandview

Madi & Jack spent their morning with Pam and Medford while Mommy took some much needed Mommy time and got a hair cut. Madi showed Pam her new bear puzzle and played with Jack and his toys. They had a great time and didn’t want to leave. 

Later in the day they visited Grandview to see Kate. She had a table with different activities all set up for Madison so she could play and work on her fine motor skills while Jack had his stretching session. Mommy and Kate stretched Jacks neck for about 20 minutes while Madi played . The whole stretching session was noisy with screaming and Madi was a great big sister and kept repeating “it’s ok bud, it’s ok Jack” while she played. 

On their way home they stopped off to pick out a new backpack. Madi starts her second year of pre school in a few weeks and decided she wanted a new backpack for a new year. After narrowing down many choices she chose a unicorn with matching lunch bag. She named her bag Joe. 

Day 535: A Day at the Orthotist 

Madi and Jack had a visit with their orthotist today. What was meant to be a 45 minute appointment for two ended up being 1 hour and 40 minutes of trying to play and distract and entertain. It also meant Madi missing her ride with Joe today. The good news is that Jack got his helmet adjusted to fit over his eyes better and Madison’s straps on her AFO’s got replaced and they put new padding in them to be ready for back to school in a few weeks.

On their way home, Madi and Jack stopped by Nate’s house for a quick play. They re-arranged uncle Marks rocks in the backyard and filled the water table using the hose.

Madison ended her day with a great session with Emily. They walked up and down the street to practice in her walker. She also practiced her walking in the backyard using her ropes and she got a great stretch with her Gaitors while they did a puzzle and played with play dough. Emily leaves for school In a week and Madison is going to really miss their time together. We are so excited for Emily to start school for physio and are so grateful for all of the time and support she has given Madison. Good luck at school Emily!!

Day 534: The Cousin Mini Olympics!

Madison and Jack love starting their day by playing candy crush with Daddy in bed. 

Madi, Nate and Jack spent their day with Nana and Papa! They went to Variety Village to play in the gym. They participated in the cousin olympics! They did an obstacle course, raced each other around, played catch with different balls, jumped from ring to ring and practiced their floor routine. 

​After their mini olympics they went out for lunch to celebrate! 

Thanks Nana and Papa for a great day!

Day 533: Family Project

Mommy and Daddy were happy for the weekend to come. Things get done around the house and everyone gets to spend time together with no major plans.

Mommy and Daddy love weekends but Madison does not do so well on weekends. She does well with routine, structure and a day full of activity. After a morning of difficulty at the house, she visited with Pam and Medford to have some lunch and have some fun. She loves wearing her backpack and marching next door in her walker. 

After a failed attempt for a nap, Madi helped Mommy and Daddy with an art project. She painted different pictures to hang on the wall in the family room and helped Jack do his handprint for a family canvas. She loved painting with Mommy and helping to clean up the family room and prepare the new gallery wall. 

Day 532: Amazing Walking!

Madi has been extremely busy lately with appointments, therapies, camp etc. Sometimes it’s hard to see her gains and with her Botox pretty much being gone, it has seemed lately like she has been at a stand still and regressing with some of her skills. She is tight and in pain some days which has been hard to see. But then, out of no where she has the most amazing physio session with Stephanie where she is able to put all the pieces together and do some of the best independent walking she has ever done! The most rewarding part was hearing her squeal with joy and asking to do it again and again because of the sense of freedom that she got a taste of. We feel so grateful for moments like these, where we can put everything in perspective and celebrate how far she has come. 

​ Jack also had physio today. They worked on his rotation of his body when on his tummy and neck rotation as well. They also worked on tilting his body to correct his head position, rolling both ways from his back and reaching forwards with both arms to play with toys. He works so hard just like his big sister but is not a fan of physio. 

It’s funny how much things change when the helmet is off and Madison is in the room with him. He lights up when he sees Madison watching him.

In other news…the playground was delivered today! So excited to see Madisons reaction once it’s built.

Day 531: Madi’s Getting a Playground!

This is a secret…Madison does not know!!

Mommy received the best phone call today! Million Dollar Smiles called and Madi is getting a playground for her and Jack for the backyard! 

Million Dollar Smiles is an organization that brings playgrounds to the backyards of children dealing with critical illnesses or to children with different physical or cognitive disabilities who would benefit from a safe place to play. 

Here is a note from the founder Anna Lopes:

“Over 10 years ago I started Million Dollar Smiles with the simple goal of wanting to bring smiles to children facing life threatening illnesses. I began with a small group of volunteers and together we helped change the life of 10 families in our first year through our Travelling Teddy Bear campaign. After years of running numerous fund-raising events resulting in many smiles, we have grown into a group of dedicated volunteers who organize fundraisers that support our gift-giving campaigns and special events.”

Million Dollar smiles did 60 playground builds this past year in Ontario! We are thrilled to be a part of it.

Madison does not know about this….it is a surprise that she will see on the day of the build once it is complete. Please help keep this secret!!!

Here is an example of a playground that has been built:

Madison will be receiving an accessible swing that will be mounted right next to a baby swing for Jack! The doorways of the house will be wide enough for her walker and there will be a sandbox and chalkboard that will be at her height and fully accessible. We will also mount flower boxes to the structure for her to have her own garden. 

It is the most perfect timing… It will be built September 11th… 3 days before her birthday!!! The 30 volunteers will arrive around 8:30 and build until 2:30 rain or shine. The organization provides breakfast and lunch for all the volunteers. They will then bring Madison out to unveil it to her and provide cake to celebrate! 

Everyone is thrilled that Madison will have a place to invite her little buddies over to play on a safe, accessible and fun place!


Madison loved having a play with Nate this afternoon and the three musketeers had a great time at Madi’s favourite piggy restaurant with Nana and Papa.