Author: katherineambos

Madison and Ben’s theme at school today was gingerbread and they loved their story and sensory time activities. Ben’s Mommy surprised them with their own gingerbread after school which Madi LOVED and ate all the way to Sassy. 

Today was Madison’s last session with Sassy. She will not be riding in the winter because of weather, the roads and the cold. Madison has really progressed just in the last few weeks. Her voice is the loudest it has ever been, she rides confidently, takes more risks with her stretching and moving around and her posture has really improved. We were sad to say goodbye to Sassy today but will see her again starting at the end of March. 

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Madison woke up this morning feeling a bit better from her cold and her legs felt good so she did some good long sitting while watching her Sunday morning cartoons. 

Today was a very special day… Madi and Jacks little buddy Owen turned 1 today! Jack had to stay home with Nana while he battled his cold, but Madi and Daddy were happy to go to the party and celebrate! Happy 1st Birthda Owen!!

After the party, Madi and Nana had a nice play making Christmas wreath crafts.

Madison had a great morning at Variety Village for her gym class with Tiffany. It was her last class until after the holidays. Her favourite thing about today was that the whole class did all the activities in wheelchairs. They played different games and her favourite was “fish net” where she got a free pass through the net because of her pink shoes! It’s so awesome for her to be exposed to such an inclusive environment where they switch the norms around to give all kids exposure and experience with something like adaptive games for people who require a wheelchair, and to give all kids the experience of using a wheelchair and what it is like. 

After class, Madi had some good snuggles with Daddy while Jack napped. Both kiddos are under the weather so lots of cuddles and napping are on the agenda. 

After Mommy was done at her coaching course, Mommy and Madi had a fun night out watching Ruby at her swim meet. Madi loved watching all the kids swim fast. She also loved Ruby’s purple ribbon – great swims Ruby!

Once Mommy and Madi got home, Jack and Daddy were ready for bed so it was a good time for a cuddle and chat before bed. Madison likes telling Mommy & Daddy about her day at bedtime and loves talking through what the plans are for the following day. While Madi and Mommy were chatting, they did each other’s hair which was a first! Madi brushed Mommy’s hair and tried putting an elastic in and Mommy was able to fully French braid Madison’s hair for the first time – it was such a special moment.

Lots has been happening in the world of Madi, so here’s a brief update on just a few of the items…

After lots of running around, conferencing with a lawyer, doctors meetings…Madi’s out of country OHIP coverage forms and referring letters for SDR surgery have been completed and are ready for the mail….cross your fingers!

Madi was able to be “slotted in” for one more round of Botox prior to surgery. Botox can not be active in her body when assessed for surgery. It can not be given less than 4 months from surgery. Her Botox she currently has will start to wear off any week now. Her doctor will not give Botox within the 3 month window of last having it, so there is a tight timeline between when to give it to not interfere with surgery. We want her to continue to be functional, progress, not be in pain and be strong for surgery so not giving it to her is not an option for us. She was able to be booked for December 21st…Merry Christmas! Although it will be the toughest set of injections yet, as she is more and more aware of what’s happening- it will also be her last set of injections as Dr Park feels that she will not need Botox ever again after surgery! Check out Madison’s new book about how Dr Park will make her spasticity fly away!

Madison is FINALLY getting a new walker! It’s called a Nimbo Gait Trainer. The frame will be the same as her Kaye walker but it will have swivel wheels so no more lifting needed and it will be able to go taller as she needs it. It arrives next Friday and will be sparkly gold which she is very excited for. 

We also just found out that Madison will be receiving a stuffy bear from the Bear Hug program through Million Dollar Smiles as a surprise next Saturday! They will deliver a bear with a Toys R Us gift card to our door to celebrate Madison and all her achievements! Thanks again Million Dollar Smiles!!!! 



Madison had a great afternoon with SUZANNE and Janine. On their way to March of Dimes they drove around the neighbourhood to look at all the decorated houses and Madison counted 20 Santas!

Madison did a super job at conducive Ed today. She worked with letters, words and numbers and did some great crossed leg and side sitting!

Madison and Jack love to give back to all the places that have done so much for them. One of the ways they have most recently given back was to Grandview and being a part of their Impact Report for 2016. It was released to all their donors and the public today and Madison and Jack attended their celebration at Grandview’s main site to see all the photos and booklets revealed. 

The kids got a special framed photo as a thank you.

Madison is super pumped that tomorrow is December 1st! Mostly because she has a beautiful advent calendar that Pam made her. She has a stocking for each day with a special treat inside. Thank you Pam!

Mommy wants to thank Madison and Jack for what they gave today. In the craziness that goes on in Mommy’s head, many many things were booked all in one day- and both Madi and Jack went along for the ride and were amazing little people!

Jack and Mommy dropped Madi at school bright and early and then headed to the local church for baby drop in play. It was then time to pick up some birthday gifts for a couple of special little boys upcoming birthday parties! Jack was a huge help picking out fun things!

It was then time to head to Grandview for a joint physio session. Madi helped Jack get through his stretches & screaming while Jack helped Madi test all her toys to make sure they tasted good. Madi did multiple exercises today to strengthen her “walking” muscles and everyone noticed a significant improvement in her control and mobility with the exercises compared to a few weeks ago. Her next (and hopefully last) Botox session was booked, pre-surgery physio sessions booked, re-assessment for Jack booked and catalogue information looked through to start ordering some equipment for the house. Madison’s new Walker was also confirmed to be delivered late next week! It will be sad to say goodbye to her little silver walker that helped to get her mobile and independent but her new one will serve her much better for her next stage of walking. 

Madi and Jack then helped Mommy drop off forms at their paediatricians. He is helping to sign Madi’s out of country OHIP forms to try for approval of some of the surgery cost. Once he completes the forms, everything will be sent to OHIP- fingers crossed!

After a quick play at home it was time for ballet! Madison let go of her walker several times to try lifting her arms in the air and turn. She was so proud of herself!  Jack watched with all the other brothers at the door. 

The last stop of the day was with Shannon for a massage. Jack was a bit fussy but got a good release. Madison did a great job breathing through the tenderness and had her IT bands taped for hip support. Both kiddos passed out on the way home and went straight to bed!

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Fundraising Canpaign Update:

Thank you to everyone for sharing Madison’s story, making a donation or helping to spread the word! Today we passed the $30,000 mark! Thank you for helping Madison get closer to her dream of walking!

www.gofundme.com/madimovesahead
If you are interested in handing out a postcard to co-workers, friends etc. to share Madison’s Campaign please let us know and we will give you a stack.

Madison had a great ride with Sassy today! She did lots of stretching and reaching, big breaths for a big commanding voice and her trotting pace increased today which meant needing to use more trunk control. She used a very loud voice to tell Sassy to walk without being promoted which was a great accomplishment. Madi was fabulous!

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As soon as Madi and Jack got home, they were eager to finish the outdoor decorations for Christmas, which sparked the bedtime matching Santa pj’s and Christmas books. 

Jacks first Christmas picture with Santa!

This morning madison attended Variety Villages “world’s greatest Christmas party”. It was a great way to spend the morning burning off energy with her friends and family. 

A big thank you to auntie em for helping out this morning!

After a long day yesterday, Madi finally slept in, not on a weekday! … Jack didn’t though he was up regular time. Once we were all up we had breakfast and made our way over to do a grocery shop. Madi was a big help, holding the list and “reading” out things we needed. More like what she wanted. We spent the rest of the day taking it easy on the couch before dinner with Nana and papa at madi’s favourite local eatery. Where madi and Jack serenaded the restaurant with their antics.