Month: May 2017

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!

​​​​
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.

​​

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. 

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

She walked for 10 minutes on her treadmill. 

​​
She did some great stretching. 

Her two activities chosen from her bin were:

1) stepping over objects

2) Independent standing

​​
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!

​​

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!

Madi was up early, along with everyone else to head to the hospital for her last Physio session in St Louis. She did some video tape work to show her walking, worked on the treadmill and did great work in her canes. Madison loved all her sessions at therapy and will miss it. 

​​
​

After Physio Madison stopped by the gift shop to pick up some souvenirs for back home, took her picture in front of the hospital sign and went by The Ronald McDonald House. The family had lots of things left over from the trip so Madi made a donation to help other families using the house just like she did. 

Later in the day Madi checked out the outlets for some shopping and big sales! She picked out lots of clothes for kindergarten in the fall! She did lots of great walking in her walker!

Madi had a Physio session bright and early this morning. The first part of the session was allocated to discuss the home program Madison will be doing for the next 6 months. She also got her different ranges measured to share with her therapists at home. The second part of the session was spent walking. Madison walked for almost 13 minutes straight on the treadmill with no breaks!

​​
Madi then went back to the hotel for some breakfast and some OT activities and then a dance party with Suzanne!

​​
After some free time back at the hotel, Madi met up with her friend Liv for some ice cream! Both girls have been working so hard these last few weeks so it was nice to go out and celebrate all their hard work together. 

Madi has absolutely LOVED working with her two therapists in St Louis. They have made her sessions fun and focused. Today was her last session with one of them and it was hard to say goodbye as she helped Madi come so far in such a short amount of time. Today they did more sitting to stand, side stepping, strengthening exercises and walking in her walker. 

​​​​​​
​​Madi and Jack then spent the afternoon doing different activities around the hotel and welcomed Nana back!

Nate & Jack had a boys morning with Aunt Nadia while Madi headed to Physio…trains, cars & trucks!!!

Madi had a great morning at Physio and showed off her skills to Suzanne who is now visiting with us. The most impressive moment of the session was Madi walking backwards for the first time on the treadmill! She also did double leg and single leg squats on the total gym. 

​​​
​​

​​

​

​​​
​​

​

After Physio Madison showed Suzanne around the hospital and showed her the rooftop garden.

After some lunch and quiet time the kids headed for dinner and shoe shopping. Madi was on the hunt for another pair of shoes that would fit her new braces. 

Madi and Mommy were up bright and early to see Dr Park for his first appointment of the day. This was Madi’s last visit with him until May 2018. Overall he was very happy to see Madison and how she has been progressing. Some highlights from the meeting were:

• He can now identify and confirm her left leg is more impacted than her right.
• Her right leg is almost at full range and was able to heel strike when walking today for him in her walker. He has no concerns about her right leg
• He advised us to do lots of hamstring and heel cord stretching of her left leg and to try our best with the night knee emobilizers and braces
• She is to wear her tall braces for 6 months and then after submitting videos and reports will move to the shorter braces
• When we see him at our one year post op he will evaluate the left hamstring for possible muscle lengthening surgery (20% chance)
• He also confirmed that we are to do another week of casting this summer in Toronto 

He still stands by all his predictions and said she will be taking steps in the next year. After his evaluation Madison gave him her photo frame gift and had him sign her Dr Park story book. She did a great job showing him her walking and it was so nice to be able to thank him again in person for the gift he has given Madison.
When she got back to the hotel it was movie time in bed with her brother and cousin. They have been so great together this trip

After a short visit back at the hotel, Madison headed back to the hospital for physio. She did lots of walking in her walker today and practiced pulling to stand in her canes. 

​​
After Physio Madi and Nate went to the hospital next door to visit Nana who unfortunately has been sick in hospital since Saturday. The kids loved seeing her and she looked so much better and is feeling much better too. 

When everyone returned to the hotel it was time for Auntie Em to leave. Madi was sad, but loved spending the last three weeks with her so we are so thankful for her time. 

Before dinner the three amigos headed to Target to pick up a few things and then it was off to dinner at The Cheesecake Factory!!