Month: September 2015

Madison had a great morning at school. They started trying her on the potty today which was exciting to hear. She was able to sit on it ok but was a little scared according to her volunteer. She also tried drinking out of a cup today at snack time which still needs practice but is going well.

After a long nap and big lunch there was no therapy scheduled and her AFO doctor was unable to see her today for an adjustment so Madison visited her neighbourhood library. She loves crawling and side stepping from shelf to shelf pulling books off. She rolls around on the floor looking through them all and then moves on to the next shelf. She was especially happy to find a shelf of Elmo ‘ s World DVD’S.

A few months ago we were asked by March of Dimes to share Madison’s Story through their mail out campaign. We had a phone interview with a writer based out of the States who asked us questions to create a story about Madison’s journey through the Conductive Education program to send out to their major donors to express the importance of continuing to support the program for kids like Madison. We are hoping by sharing Madi’s story that it will make a difference for other kids wanting to continue to access the program as well.

Here is what the mail out looks like:

Today was Madison’s first official day of preschool! She was dropped off bright and early and easily went to play with the others in her class. She is in a class of 6 girls in total, including herself and they are all ages 2 to 3 years old.

We received multiple messages from her teachers today which we were very appreciative of. Here is an email from her teacher and some pictures that were sent of her first day.

“Sending you some pictures of Madison fitted in her walker (and using it!) for school and enjoying time on the trampoline. I was telling James how she was so motivated to move all morning and how happy she was to do so. This was particularly evident at the end of music circle where she got a turn to cruise around with the teacher to shake hands and say “bye bye”. She had a fantastic first day!”

Madison also has a communication book that is sent home each day and this is what it said today:

 

Madison then spent her afternoon hanging out with Dada and then went over to Pam and Medfords for dinner while baby #2 was checked up on at the doctors.  Madison ate very well which we were happy to hear after her long day.

Madison had a fantastic first day! We were particularly happy to hear how mobile she was and how much they challenged her even on the first day. After reading her book tonight I asked her if she wanted to go back to school tomorrow and she said “ya please”

Madi spent her last day of summer trying to beat the heat. On a regular day she is very overheated from the amount of effort it takes her to do most things.  Today was exceptional. She was hot and sweaty all day so she spent most of her day playing in the basement where it was much cooler then the top floors. She loves how open her playroom is. She has lots of space to move around and play with different things and the layout worked out well in that there are lots of things for her to pull herself up on to stand and play or balance on her knees. She can’t wait to have lots of play dates in her special space.

The only time spent upstairs was making mini pizzas for dinner. She loves helping in the kitchen! We had the best summer but hopefully the heat will be gone soon.

Madison had a blast this morning working with The Happy Soul project at a photo shoot for their different is beautiful upcoming calendar. We all were honoured to be a part of such a positive and inspirational group helping to spread a very important message…that our differences are what make us beautiful. Madi showed off her walker and new sneakers and contagious smile and did a great job. The calendar will be ready and on sale in October. Proceeds go to The Happy Soul Project and their Kick It Capes campaign. Calendars are $25 and can be ordered through us to avoid shipping costs. Thanks Happy Soul Project for allowing us to be a part of such an amazing project.

After her photos were done we were on our way home and noticed an IKEA in the same parking lot! Perfect as we have been trying to find time to go and get Madi her new bed and the bed sale ends tomorrow. We chose a bed that is low to the ground, is adjustable in length as she grows, has a low but firm mattress and has bars for her to hold onto to help herself get in and out of bed.

When we got home Madison had a nice visit with out neighbour Pam who gave Madison an early birthday present. She wanted Madison to have her gift before Pre-School starts. She made Madison a beautiful blanket that Madison can take with her for all her early morning car rides downtown to snuggle with and keep warm in the car once the weather starts to change. Madison loves the blanket!! Thank you so much Pam!

After some playtime at home, Madison headed over to Nana & Papa’s for a family BBQ. She loves her cousin Nate so much and was so excited to see him. They had a good time playing. Papa & Nana have been hard at work making a bedroom for Nate, Madi and future grandkids for sleepovers and afternoons after pre-school. The room was revealed to the kids tonight and they loved it! Thank you Papa & Nana for such a beautiful space for your grandkids to grow into.

Madison spent one of her last days of summer at the Jays game today. She invited Nana and Papa too and it was a blast! She clapped, watched, danced and pretended to throw many many balls.

Madison is a happy girl now that her kitty is home. Yesterday afternoon Stitch made a hole in the screen and escaped through the backyard. When this has happened in the past she usually returned within a few hours. At Madison’s bedtime lastnight Stitch was still not found. Madison asked over and over to see Stitch but she was gone.  Our amazing neighbour’s helped us search the neighbourhood for hours and by flashlight in the dark. Finally at midnight last night after 9 hours of being gone our neighbour’s found Stitch. She was in another neighbour’s backyard. James and Medford got 2 ladders. One to climb the back fence and then one to drop into the other yard. Sure enough Stitch climbed the ladder and jumped into James’ arms. Madison was very very happy to see Stitch this morning when she woke up. She didn’t leave Stitch ‘ s side most of the day.

Madison had her last summer class at March of Dimes today. She will be on a break until the end of September . We are so grateful for all the time she was able to spend there this summer, their amazing instructors who put time and care into planning excellent activities and helping Madison make so much progress. We can’t wait for her to get back and keep going with all her hard work.

Madison had her botox assessment appointment at Grandview this morning. Her physio Kate also attended to help the doctor understand Madison’s work over the last few months.

They started with an assessment of her movement through activity. Kate led Madison through a serious of activities so the doctor could watch her movement. He then did a physical assessment where he moved her legs in different positions to see her tone and her range with muscles and joints. He then talked to us about botox and how it works. Botox® works by blocking the connection between nerves and muscles. This causes temporary decreases in muscle tone which can last for 3 to 6 months.

He explained that he looks at two factors when deciding if botox is the way to go. The first is body structure- so looking at Madison’s tone and seeing if it has an impact on the growth and formation of her bones and joints. The second is performance – so looking at Madison’s tone and seeing if it has an impact on her everyday movements/purposeful movements and the speed in which she executes the movements. He concluded that structure is not an issue at all but performance is. Botox can help her performance.

He described Madison as being a moving target, meaning she continues to change so rapidly both developmentally and with her growth. He was very pleased with her range in most joints and feels at this time we will hold off on the botox and see him again in 2 months so he can see the change she makes over time. He celebrated our success with all of her therapies, stretching and activities and attributes that to how well she is doing and not needing the botox right now. After the summer we’ve had it was nice to hear.

In 2 months time we will re-assess for botox. If she receives it at the end of November it will be shots in her calf muscles and hamstrings being 8 shots in total. We are also applying for coverage to see if any part of the shots can be covered as they are costly.

It was also exciting to hear about their view on her classification level.  When she was first diagnosed we were told she was a level 3 and now they are saying she is a level 2. It was a positive appointment and it was so nice to hear how well they think she is doing and to continue exactly what we are doing with all her therapies.

Thank you to everyone who has helped us and been involved with Madison’s therapy. Today’s appointment was a win because of everyone on Madison’s team.

Madison then spent her afternoon at March of Dimes continuing on with her therapy and kicking butt!

Our apologies for not posting yesterday. There were issues with the blog site.

Yesterday and today were filled with Daddy Daughter time now that Mama is back at work.

In the last two days Madison has gone to March of Dimes twice, Grandview once, Nana’s house and had some backyard fun in the pool with lots of time with Dada. We are thrilled with the amount of therapy she has access to this week.