Author: katherineambos

Madi had a very long and eventful day. She had school, physio, a visit with Nana, a visit with grandma and grandpa and a trip to the beach to walk the boardwalk tree lighting. Pictures will be posted in the coming days. Hopefully tomorrow will be a quiet and uneventful day …

After a gross commute and Madi tripping on the ramp at school, Daddy thought for sure it was “going to be one of those days”. But after reading her school book it was noted that madison was full of giggles and made everyone smile at school today. Her spirit remained high even after a trip to the doctor to get her flu shot. She and Jack played and made faces. Mommy and daddy spirits were also high after receiving some positive progress in regards to some potential SDR funding options from the government. Madison finished her day off by showing pam and Medford her ballet moves. The pictures and video are priceless! Mommy will have to post them later.

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Madi and Jack enjoyed a time out from their regular appointments, school, routines etc. and went with Mommy & Daddy to the aquarium for the day. Starlight Children’s Foundation gave Madison passes and a family photo so she could enjoy a day with her family- and did she ever! Her and Jack LOVED watching all the fish and exploring. Madison’s favourite thing was the jellyfish and Jacks favourite thing was crawling through all the tunnels. Madison walked in her walker the whole time! Thank you Starlight! 

Madi had a great ride with Sassy today. She had a super loud voice to direct Sassy and did lots of posture work using the mirrors. The farm was beautiful with all the fresh new snow. 

Madi swam with a new mermaid friend tonight. Her and Ryan swam with Janet from Swim Canada. Janet was in town from Victoira and stopped by Variety Village to work with all the para swimmers and grassroots kids, including Madison. Janet was able to give Ryan next steps of things to work on, like keeping her arms in extension instead of flexion and having different options for floats and walking. It was an excellent opportunity for Madison and Ryan to work with such an experienced and knowledgable coach who was paramount in the creation of the sport class system for swimming and understands how “the cp body” works in water. 

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Madi, Jack and Nate bundled up to go to the Santa Claus parade today to see Santa and give him their letters. It was a wonderful day filled with VIP parking, snow, treats, lots of awesome floats and singing favourite Christmas songs. It was a great way to kick off the holiday season. 

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Just as Madi started to have a few days of relaxed tone, her tightness and pain kicked back in this morning which made for a difficult start to the day. 

She LOVES going to her gym class at Variety Village with Tiffany, but today she was not in the mood to walk or do much for the first half of the class. Near the end, she tried walking on the track and playing different ball and net games which was good. 

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Jack kept himself busy while his big sister was in her class. 

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Thank goodness Madi already had a massage appointment booked for today… Perfect timing! Shannon observed some increased tightness and a definite overflow of tone to her upper body in her shoulders and arms that we have not seen for a while now… Poor kiddo… Can’t wait for May for her surgery so this type of pain and tightness can be dealt with.

We decided to ditch the “to do list” for the rest of the day and have some fun getting ready for Christmas and the Santa Claus Parade tomorrow! Madi and Jack went shopping for some new outdoor decorations, made cookies for the parade tomorrow and helped Daddy build their new snowman to which Madi has already named him “Frosty-Olof”. Madi also decorated her Santa letter envelope that she and Nana wrote together. Madi is very excited to give her letter to Santa’s helpers tomorrow. 

New tape to support Madison’s hips

Jack taking a stroll around Variety Village while Madi worked hard in physio

Stephanie brought Madi and Jack into the multi sensory room to practice some walking and do some stretching in a calm/soothing environment- they LOVED it!

Today is World Prematurity Day. 

“Each year Worldwide, 15 million babies are born too soon. The rate of preterm birth is increasing and yet the general public knows little about the prevention of preterm birth and the problems and risks involved in the development of a preterm infant. Preterm or premature birth, birth before 37 weeks gestation, is the second leading cause of newborn death globally. Babies who survive an early birth often face the increased risk of health challenges such as breathing problems, cerebral palsy, intellectual disabilities and many other hurdles. For many families, preterm birth brings with it neonatal or infant loss.”

Madison was born at 32 weeks, 4 pounds and spent her first month of life in the NICU. Many of her little friends share similar stories of early birth and all the challenges and obstacles that were up against them from day 1. 

Madison has been a fighter from the start and we are so blessed for the little girl she has become. 

Madison continues to blow us away each and everyday. She is extremely motivated and determined and much of that comes from her early days of life and defining what it means to be resilient . This is how we know she will be great and do great things thanks to the doctors in St Louis and the opportunity they are giving her with her life changing surgery. To help Madi get to St Louis check out her Fundraising page:

https://www.gofundme.com/madimovesahead?ssid=808161736&pos=9

Madison was thrilled at school today when an ambulance visited. One of her volunteers Greg is a paramedic and brought his ambulance to school today to teach Madison and her friends. This week at school they are learning about Doctors and hospitals so she is right in her element. 

Madison had a great session at conductive Ed today. She was tighter then normal in her hip flexors and hamstrings but she did awesome walking with her canes!

Mommy was so excited and proud at swimming tonight. Madison held onto her turtle flutter board and kicked on her tummy, floated and kicked on her back in her life jacket and did awesome independent walking in the water. The best part was feeling her legs after. She was able to be free and relax in the water which meant no muscle spasms and a great bedtime. Can’t wait for her surgery when she can aways feel that way!

Madison’s Go Fund Me for her surgery:

https://www.gofundme.com/madimovesahead?ssid=807185887&pos=7

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