Day 456: Responsibilities 

Madison tried her best and worked her butt off at physio today. She started with squating exercises to strengthen her quad muscles and get a good stretch to prepare for standing. She practiced standing up from the floor not holding onto anything. Stephanie also did some excellent treadmill training and Madison was the strongest she has ever been on it. They did lots of walking and Madison took 6 independent steps and stood independently for 20 seconds!

Before dinner Madison headed outside in her walker to check on her garden. One of her new responsibilities around the house is to water her seeds each night to check on her flowers and her bee visitors. She takes is very seriously – she never forgets about her job. 

At the end of a long week, family snuggle time is the best!

Day 455: Feeling Accomplished

Madison worked hard with Monika this afternoon at March of Dimes. She tried standing up from a bench and side stepping without holding onto anything. She did great! They also did lots of stretching of her hamstrings now that the Botox is working its way through her muscles. Madi showed Monika how she has been practicing standing up from the floor and they worked on walking with her canes. When watching Madison at conductive education we often think back to when she first started about 15 months ago. At that time she was learning to roll over, sit independently and crawl. She has changed so much since then and has accomplished so much with her dedication and hard work.

When Madi got home she wanted her sweater to be taken off. Mommy had to feed Jack who was having a meltdown so there was no one to help Madison. She then said to Mommy ” it’s ok Mommy- Madi will try” Madison then proceeded to unzip her sweater all by herself and after about 10 minutes of pulling and pulling on her sleeves she got her sweater off all by herself. Madison was so happy and proud of herself and kept screaming “I did it Mommy! I did it!” She then did her little dance that she does while singing “I did it, I did it, I did it!” Such a small, everyday thing to try, but such a big moment to celebrate.

Here is Jack, post meltdown… He is quite happy with himself hahaha

Day 454: Success at School!

Today was a super jam packed day for the Ambos family. Madison had some exceptional experiences today that made for a positive day, and Mommy and Daddy made some progress with their “to do” list.

Madison’s teacher reported that she took some independent steps before music circle this morning. One of her teachers was so happy to cheered and had some tears of joy! 

Madison had a good ride on Joe this afternoon. Madison told Mommy and Daddy that she let go of Joe to touch her helmet and then touch her toes. They are working on balance, coordination and core strength. Madison also played a game with Joe who was wearing a necklace made out of rings. Madison had to try and reach forward to touch the different coloured rings while Joe walked around outside. It was a beautiful day! 

 Madison spent some time with Aunt Nadia, Uncle Mark and Nate while Mommy and Daddy had a meeting with their Social Worker. Madi and Nate had lots of giggles and played in Nates fort. Mommy and Daddy spoke with their Social Worker about funding for renovations, ways of talking to Madison about her challenges, upcoming scheduling with her new developmental pediatrician, checking that Madison is on “the list” for the CP specialist coming from out west, investigating community programming for the summer etc. etc. etc. 

Mommy also heard back from one of the school options for Madison for September 2017. Mommy and Daddy will be going to meet the principal in a few weeks to have a tour and see what life would be like for Madison in a regular full day kindergarten class so that decisions can be made around what the best fit will be for her. A few other schools will be looked at in the next few weeks including Grandviews school before everyone goes on vacation for the summer. 

While dinner was cooking, Madison helped Daddy water all the flowers. She loves her job of filling up the watering can from the rain barrel. She was especially excited to see a big fat bee flying in the garden that she planted to save the bees! 

Day 453: Happy Birthday Nana!

Madison was excited to sing Happy Birthday to Nana today! She can’t wait to celebrate this weekend!

Madison did a great job at the pool with Ryan. She is getting so confident with walking up and down the ramp by holding onto the rails. They spent most of their time in the warm pool to help her tired leg muscles. Her legs are still quite weak from the Botox last week. At the end of her lesson Madison helped Mommy coach Ruby in the deep end. She loved watching all the “big girls” swim.

Day 452: Walking on Wet Grass

Madison had a great afternoon with Grandma and Grandpa. She was a big girl and got in and out of bed all by herself at nap time and also used the potty. 

Madison and Emily worked on a bunch of skills tonight. Emily noticed right away the difference from last week to this week with the addition of Botox. Her and Madison practiced off roading outside in her outdoor walker. Madison moved from flower to flower trying to pick them for the bees. She also practiced walking on uneven ground with her ropes. It was also tricky because the grass was wet from the rain so she slipped a few times and really had to think about her foot placement. When they went back inside they did some fine motor practice with scissors and crayons while getting a good deep stretch in her leg Gaitors. She wore them for a full 30 minutes – a new record! 

Day 451: ABM

Madison spent her day with Nana and Papa while Daddy and Jack took some time to kick some germs and Mommy learning at a workshop.

Madison went out for a yummy breakfast and then did crafts and learning with Nana back at the house. She decided to not use her walker at breakfast because her legs were tired and sore.

Madison made a puppy with Nana. She worked on her cutting and gluing skills and drawing lines. She loves using her learning scissors. She also practiced writing her name. She loved making numbers with glue and sprinkling sparkles all over them. 

Madison was also excited to hear about “Mommy at school.” Mommy went to a ABM workshop today to learn about another alternative therapy for Madison. Through the powers of social network Mommy met an amazing group of moms with kiddos much like Madison who encouraged Mommy to check it out. Some have already tried ABM and some are starting to explore. Mommy learned lots and was excited to try a lesson with Madison as soon as she got home! For those who don’t know, ABM stands for Anat Baniel Mehod. Here is a small blurb… And for all Mommy’s teacher friends out there…neuroplacticity!!

Madison is signed up in June to try this method of therapy with a professional, and Mommy will work on some of the methods behind the theory of the work at home to supplement the other therapies Madison is currently accessing. Here is a video of Mommy trying one movement lesson. Mommy needs more practice, knowledge and time but it’s a start.

Mommy and Madi also were able to do some good stretching before bedtime. It is already extremely noticable the difference in her leg tone since the Botox. Madison’s hamstrings are much more flexible. So much that Madison was attempting to stand up from the floor tonight! It was so exciting to see!

Day 450: Applying her Strategies

Madison had a great morning at Pam and Medfords. She loves playing with the special gold horses and her pink ball. She was very excited for her tea set gift Pam and Medford gave her. She talked all day about her pink tea and her purple plates. Jack is still under the weather, but he loved getting cozy in his new quilt. Thank you Pam it’s beautiful!

This afternoon after her nap, Madison played with Carter and Stitch in the family room. While Mommy was feeding Jack she noticed that Madison was talking to herself in a whisper. Madison was whispering the steps she needed to take to sit in her bouncy chair by herself. She was standing at the ataman, took a step backwards, bent her knees to a squat position, froze in the squat position while she felt with her hands for the chair behind her, and then sat down. She whispered to herself the different steps she needed to do to sit. It was so exciting and rewarding to see the transfer of what she has been working on in therapy, to a real life situation at home. Next time she does it Mommy will make sure she has her phone nearby to catch a picture or video to share.

Day 449: Stretching Superstar!

Madison had a great day! After only 2 days of Botox everyone is already seeing the positive impact. The consistent thing people have commented on is how quickly fatigue sets in for her, but the quality of her leg function and flexibility is already noticably better. Even comparing putting her AFO’s on today compared to Monday is a big difference. Everyone is very excited for the next chunk of time when the weather is nice and she can get outside to be active, continue her therapies and see excellent results once the Botox fully settles in. Madison did excellent work with Stephanie. She did long sit floor activities to stretch out her legs and get out of the “w sit” position. She also did fantastic walking… 4 controlled steps!!! Stephanie has set the goal of 5 steps over the next month- totally achievable!! Go Madi!!

Jack is also going to be spending some time with Stephanie to help Mommy and Daddy learn some good head and neck stretches to help him along. Madison was very excited to show Jack “what to do” when with Stephanie. She helped set up toys for Jack and the floor mat. 

Madison did some great stretching at home tonight. She stood in her tower for a long time with both her AFOs on and her Gaitor braces. Her legs were super stretched out once they came off. Madi even sat in long sit in her floor chair while eating her ice cream sandwich. She told Mommy that stretching helps the medicine in her legs work. She is so smart!

Day 448: M.O.D. Movie Star!

Madison did an excellent job with Monika at March of Dimes today. During her class she was filmed for a short video that is being put together for their upcoming Ability and Beyond dinner. The video is an oppertinjty to share with others all the success Madison has experienced at conductive education and to help raise awareness and funds for the future of the program and all its participants. Mommy was also interviewed and will be presenting an award at the dinner in a few weeks. Here is a small blurb of what Mommy answered to one of the questions:

What has CE done for Madison?

Madison has thrived in the CE program. She continues to progress each and every class. 
When she first started she was learning how to sit and roll over and now she is standing independently and taking independent steps. She is also now learning how to use quad canes by herself.
She has become more confident, resilient and a risk taker because of the work she has done in CE. 
One of the biggest changes we have seen is her self awareness in controlling her body and what she wants to do. They have taught her to really stop and think about her movements associated with a task before moving forward. 
Her conductors truly care about her and her progression and Madison loves going each and every week because of the success she has experienced. 
Our family is always looking for ways to give back to those who have made such an impact with what they have done for Madison, so we were all very happy to be a part of this project.

Day 447: Botox Success!

It was an early morning for Madison. Nana was at the house bright and early to entertain Jack so that Madison could make the journey out to Grandview Oshawa with Mommy and Daddy. Madison met with her physio Kate, one other physio and Dr Mazon who leads the spasticity clinic. She walked in with confidence and loved playing in their new waiting room. When it was her turn she went in to see Dr Mazon. He did some leg wiggles, watched her walk, measured her leg muscles and ranges and then decided to continue with the plan to move forward with the Botox. Madison knew what was happening even before going into the second room, but she was so brave and lied down face first on the table. She put her little face into the pillow, held Mommys hand and then they started. Dr Mazon used an ultrasound to guide the needles into the right muscle spots. She had 8 injections into her calf and hamstring muscles. She cried but did a great job of staying still. It was all over in about 8-10 minutes. She surprisingly thanked the doctor and then headed out to the car. Mommy and Daddy were so proud of how brave she was.

On the way home Madison went to the toy store to pick out a treat and then get a haircut. 

After some rest at home and some lunch, Madison went to see Joe for her weekly date. It was a beautiful day out so they did their whole riding lesson outdoors. She had no complaints about her legs and did a great job.

Madison spent the rest of her day helping Daddy outside with some gardening to save her bees.

Madison will be doing a strict stretching routine over the next few weeks and will be using her Gaitor splints lots.

Thank you to everyone who sent well wishes today – we were all very appreciative of the love and support!