Madi Moves

Madi and Jack had an awesome start to their day. Their newest cousin Callum visited with bags full of frozen meals for the next few weeks! A big thank you to Patrick, Heather, Molly and Callum for organizing frozen dinners to help us out as we settle into new routines being home. Thank you to everyone who contributed!

Shortly after their baby snuggles, Jack headed to daycare and Madison went to Physio at Grandview. Today she did lots of walking in her walker, practiced going up and down stairs, used a mirror to watch herself do standing and did some side stepping.

Madi and Mommy then went to Madi’s new school to pick up her registration package for after school daycare. When she got home she had some time before picking Jack up, so she hit her gym for some treadmill walking and some sit to stand activities.

Madi and Jack ended their day with a visit to Shannon’s for a massage. They are big fans of Netflix during massage. Madison was so relaxed afterwards she settled into several sitting positions so naturally. It was beautiful to see.

Madi and Jack spent their day unpacking and putting their things away from St Louis. Madi is becoming much for confident around the house again, not asking for as much assistance with doing things or getting around. Today she was found standing to open and close the fridge and to go in and out of doors of different rooms to hide from Jack. 

They spent their afternoon hanging out with their buddy Cruz for a BBQ. It was so nice for the kids to get together to play, to share all the stories and experiences of being in St Louis, celebrating Madison’s success and celebrating Cruz’s new journey of going to St Louis for SDR in April 2018. 

If you would like to support Cruz’s journey towards SDR so he can have the same opportunity as Madison – please visit his GO FUND ME page:

-Go Fund Me Link for Cruz-

Madi was up bright and early to go to Physio with Stephanie at Variety Village this morning. Madi was so excited to see Stephanie and tell her all about St Louis and start the next part of her adventure with Stephanie. 
When Madi walked into Variety Village she saw this sign and had a huge smile!

They worked on lots of strengthening exercises and did some walking in her Gaitors!

​​​Madison was super excited to go to Shannon’s house tonight for a concert! Madison loved seeing the Love Locks perform and had a yummy dinner which included bear meat! Shannon said a beautiful speech about her relationship with Madison and our journey over the past year. The Love Locks said a special hello to Madison and gave her a signed poster. It was so nice meeting so many supporters of ours! Thanks Shannon for a wonderful night!

Madi had a rough start to her day… Lots of time outs from poor behaviour which was clearly from the lack/little to no sleep she got the night before. Once she ended up napping in the morning (she was clearly exhausted) and having a big meal she slowly bounced back to herself and the day then moved forward.

While Madi was dealing with her challenges at home, Jack played at Pam and Medfords and didn’t stop moving or playing the whole time. 

Madison then met up with her friend Mya at Variety Village for a play in the multi sensory room. It was Madi’s first visit back to VV since returning from her surgery … Amazing feeling to be back!

After their chill time together, they headed to the pool for Madi’s first lesson back with Ryan. They tried her leg Gaitors in the water to help her knees stay straight and to try kicking from her hips. She did some bobs, some side stepping and lots of walking.

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Once Madi and Jack were home they had some dinner and then headed out for a bike ride!

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Madi went to visit her orthotist this morning to show him all her new braces from St Louis. Her braces overall fit well, but the pocket around her heel has been too big. No one could figure out why until today – when Madi was casted after surgery it was when she was severely swollen so the casting size was not true to her size. He figured that out right away today and made adjustments to fix the issue. We also booked Madison’s next round of serial casting with him for the first week of July. 

Madi then spent 3 hours this afternoon at conductive education working hard – which meant an early evening getting to bed.

Happy Birthday Medford!

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Madison had her first full day of therapies since being home from St Louis. Mommy was unsure how she would handle a full day, but Madison was happy and excited and her old self all day long – such a creature of habit – once she was around her team of people and doing what she loves – she was great!

Her day started with a visit at Grandview with her PT, OT, speech therapist and social worker. It was awesome seeing Madison walk in the building just as she did 6 weeks ago when we left. They were so happy to see her and excited to hear about St Louis and all the work ahead of us.

After some lunch at home Madi headed downtown to conductive education at March of Dimes. She was so excited to see Monika. It was just the two of them for two hours! They did all kinds of walking, cane work, floor work and stretching. She also attempted walking down a ramp for the first time in 6 weeks. Madison had an awesome time!

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As soon as Madi and Jack got home the ice cream truck drove right up to the house- a great way to celebrate a great day! Thanks Pam for having $ on hand so we could say YES to ice cream!!

After dinner Madi did some great work in her gym…needless to say she is passed out and sleeping well after her busy day.

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Madi and Jack finally slept! And slept in! So it was a glorious morning at home with a late breakfast and then a nice visit at Pam’s while Mommy unpacked some more.

It was then time for Mommy to get her hair fixed up so Madi and Jack went for a visit with Suzanne and Nana.

Tonight was also their first appointment being back in the city. They visited with Shannon for a massage. Shannon loved feeling Madi’s legs for the first time. She said Madi had no more joint swelling, smooth joint movement, better range of motion and Madi was much more sensitive and was ticklish- something that she never expressed before. Shannon noted the same observations as Dr Park – tight left hamstring and heel cord. She also noted a pelvic tilt which we will work on alignment in the next few appointments. 

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Once Madi got home she was relaxed and headed to her gym. 

She walked for 10 minutes on her treadmill. 

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She did some great stretching. 

Her two activities chosen from her bin were:

1) stepping over objects

2) Independent standing

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Mommy & Daddy were so thrilled to see Madi standing all by herself! Today was the first time she was able to stand since before her surgery, 4 weeks ago today. 

Stitch is home! Thank you Christine and Emily for taking such good care of her!

By the time everyone went to bed after returning home from St Louis it was about 3:30am, so needless to say this morning was a write off. Lots of lying around and PJ’s in bed followed by a late 11am breakfast. Once breakfast was over, Pam popped over to visit and Madison and Jack thanked her and her family for the awesome welcome home balloons, sign and groceries! The kids played with Pam while Mommy & Daddy unpacked the van and started to get things organized and put away.  

Here is the face of a 3 year old on 3 hours of sleep

Mommy was so excited for this:

After a nice visit and some quiet time, Madison and Mommy went out to run a few errands to get organized for the week. 

Jack stayed home with Daddy and ran around with all the balloons!

Daddy’s birthday yesterday was spent driving, so everyone had cupcakes and swinging in the backyard tonight to celebRate!

Part of the errands that Mommy & Madi did today was searching for things to help start her new routines at home.

For her post op rehab, Madison is required to wear her night braces and knee imobolizers every evening at bedtime, stretch everyday, do some sort of therapy 5 days a week and implement a supplemental therapy program at home. Her therapists in St Louis and in Toronto helped come up with these ideas for Madison to try:

Her pink brace bucket and calendar with stickers will stay next to her bed. The calendar tells her what leg is wearing the equipment each night and once she has everything on, she can put a sticker on the date. It was recommended she wear more on her left leg and to have one night off a week.

Here is her stretching guide to help facilitate her daily stretches. She will also use her treadmill 5 days per week to practice walking forwards, sideways, backwards and eventually on an incline. If she walks for more then 10 minutes she can put a sticker on her board. Once she collects 10 stickers she can pick a new app for her iPad that we use to distract her when walking or stretching.

Madison will also pick two activities a day to do in her gym in the basement. She has a small bin with many activities to choose from. Once she picks from the Peppa bin and completes an activity, she will put it in the Skye “all done” bin to help us keep activities diverse throughout the week. She will cycle back through them once all have been completed in a weeks time. 

We will try this system for the month of June and then see how she does and if this works for her and what she needs to be doing to progress. Her therapies that are lined up for the month of June are: swimming, horseback riding, massage, conductive education, ABM and Physio.

Today was Madison’s last day in St. Louis. Her and Jack spent the morning eating breakfast and playing while the adults all packed to leave. All of the hotel staff said very meaningful and emotional goodbyes. They were all so amazing during our almost 6 week stay with them. They made our stay with them feel like being at home. Thanks for everything St Louis! The month of May has been truly life changing for us.

It was a long way back home with frequent stops to give the kids a break. Madi’s back is still tender so she needed to be adjusted every couple of hours to make her more confortable. Currently, we have been on the road for 12 hours and we have about 4 more hours to go. Nana & Papa have been following us the whole way to help at our breaks and have some meals. Thank you to everyone for continuing to follow our journey. We are very much looking forward to being home in our own beds in a few more hours!

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Madi spent her day seeing some sights and hanging around the hotel relaxing for her final day in St Louis. 

Mommy & Daddy did some shopping and made sure to pick up the essentials to bring home…

Madi and Jack did a great job packing 

Everyone also watched the weather while packing…tornado warnings!!

Th final night was spent having a yummy BBQ dinner and celebrating Daddy’s birthday (tomorrow). Madi and Jack will be up bright and early tomorrow to start their drive back to Toronto!