Madison had a great day celebrating Thanksgiving at The Old Mill. She ate lots from the beautiful buffet and loved walking the grounds to check out all the water. She was very proud of herself for walking down the big stairs holding Daddy’s hand.
Month: October 2016
Day 594: Madison’s Big News!
We have a lot to be thankful for this Thanksgiving!
7 months ago, Mommy started some reading and research on a surgery called SDR that seemed to keep popping up on different CP websites, Facebook groups and CP blogs. It caught Mommy’s eye because it seemed to be best received by children displaying similar challenges as Madison and was most successful with children who have CP-Spastic Diaplegia, which is the same diagnosis as Madison. SDR stands for Selective Dorsal Rhizotomy.
SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord.
Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord.
At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.
In the spring of 2016, Madison started displaying increased spasticity, her gait became more crouched and some deformities in her feet/toes started to show. Although she was always showing progression and excellent response to her various therapies, Mommy and Daddy were aware of the changes and had always been looking for other opportunities of how to help Madison and provide her with the best quality of life possible.
Dr. Park has given Madison an amazing gift.
After months of research, seeking help from other families walking the same path, appointments, x-rays, video analysis and application forms…Madison has a special message to share with everyone.
Please check back and follow us daily to see how you can help support Madison in her journey to St. Louis. Madison will have a Go Fund Me page that will be launched soon and various fundraising events…stay tuned!
Day 593: Success @ V.V.!
Madi had an even better class at V.V. this morning with Tiffany and her instructors for Children in Motion. They ran around the track, played different chase games and games with bean bags. She did a great job trying to participate and follow instructions. They also did different walking styles while following in a line. Madi liked playing with Jack once her class was finished.
Madison and Jack went over to Grandma and Grandpas for lunch. Madison liked watching Stanley chase and eat her floating bubbles and her and Jack liked playing the piano together. Madison also practiced walking outside by pushing her pink chair.
After lunch it was nap time. Madi and Jack have slowly started napping at the exact same time!!! Woo hoo!! When they woke up Nana & Papa were at the house ready to play! Mommy & Daddy headed out for dinner and dessert. Madi & Jack played with play dough, read books, had dinner and raced each other up the stairs before bed.
Day 592: Jack Update
Madi had a great morning at school. She is asking good questions to problem solve and has enjoyed the different painting activities at sensory time. Today she did a great job using her loud voice to ask for more snack.
Madison is also proud to be a representative for the amazing organization “Three To Be” for children with neurological disorders. Mommy finally saw the new page that is up today.
Jack had a check in with his orthotist today. His head has grown and has shown some change in shape. His helmet was adjusted, but he will be returning on Tuesday to get another scan done to see the percentages of change to decide on the next decision with the helmet. He has been tolerating his helmet really well. His neck has also become stronger and he also has more range and rotation from all his stretching.
Jack continues to be on the move! Today he loved trying to walk between furniture and climbed over and under things at Nana and Papas house.
Day 591: Giving Back
Today Madison, Mommy and Jack were interviewed by a freelance writer hired by Grandview to write and publish new family stories for their foundation campaign. Everyone hung out at Pam and Medfords for the interview so that Mommy could get some help and because Mommy’s house is currently a disaster! Thanks again Pam!
The writter will be putting together the story with the photos taken earlier this week. It was so nice to share our families experience with Grandview to help give back in support of their upcoming campaign for a new build. She asked Madison how her morning at school was, what she liked about Grandview, what her favourite colour was and what kinds of activities she likes to do. Madison did a great job answering most of the questions. After a little while Madi lost interest and decided she wanted to play with Pams tea set, make a cake and play with Jack. Pam and Medford ended up taking the kids to the backyard to play on the playground until Mommy was done.
Day 590: World CP Day!
Today all over the world, people celebrated those living with CP.
Madison celebrated with her friends at school this morning and her teachers were kind enough to make a banner and they all had green cupcakes at snack!
Madison also enjoyed CP day celebrations this afternoon with SUZANNE, Janine, Buddy and her friends at March of Dimes.
Madison wants to thank everyone who wore green today to help spread awareness and to celebrate what makes you different, is what makes you beautiful.
Day 589: Therapy Tuesday
Today was a BUSY day for Madison, full of different activities geared to work on various gross motor goals.
After a busy morning at school, Madison went to Grandview for physio. Today was the start of a new therapy block, post Botox. Madison settled into routine while Jack had a quick neck stretch from Kate. Mommy & Kate set three goals for this physio block.
1) building muscle strength in legs
2) standing up from the floor, pausing & then initiating independent steps
3) working on all transitions needed to get on and off the potty independently.
Mommy & Kate also re-assessed current equipment use, looked at a new walker to order, looked at what changes need to be made to AFO’s and discussed a new at home stretching program.
Kate did an assessment of Madison’s different ranges and transitions post Botox and then worked on a few skills. It was an excellent first session back.
After some dinner and playtime with Jack, it was time for ballet! Madison used her arms consistently tonight and tried spinning in her walker. Madison has also done a great job trying to point and flex her feet and wiggle her toes to the music. Ballet has been a great opportunity for Madison to get a better “feel” of her feet out of her AFO’s. She loves going to ballet!
After ballet Madison visited Shannon for a late night massage. Madison was excited to see Shannon’s new tape! After a few minutes, Shannon could feel the difference with the reduced tone in Madison’s legs – thank you Botox! Madison picked her new tape, got worked on and then headed home to bed. Thanks Shannon for a relaxing way to end the day.
Madison would like to remind everyone that tomorrow is World CP Day! Wear some green in support of Madison and her friends. Xo
Day 588: Grandview Champs
Madison and Jack spent their afternoon at two different Grandview locations. Their first location was to meet with Madisons new Dev. Pead. Her original doctor at Grandview who was the one who gave us her diagnosis has retired, we were passed around for about a year meeting with different specialists, and then today we met her Doctor who will manage all the pieces of her treatments and hold the “bigger picture” stuff for us. She was amazing! She is completely on the same page as us, asked really good questions and was so good with Madison. She was encouraging with choices we have made for Madison and helped us develop a short term/long term plan.
It was then time to head to the next Grandview location to meet with a few other families and some staff for a photo shoot. Madison and Jack were asked to be a part of Grandviews new campaign and the process started today with some photos, followed by an interview later this week. Grandview has been truly amazing to both Madison and Jack and it’s wonderful for M & J to learn at such a young age the importance of giving back and supporting those who support you.
Day 587: Mike GREGOIRE Memorial Golf Tournament
Today was a very special day. Madison went to Deer Creek Golf Course to participate in the Mike GREGOIRE Memorial Golf Tournament. Mommy & Daddy are grateful that Madison was one of the receipients of funds raised at this years tournament.
Madison greeted all the golfers as they entered registration.
Madison was happy to be a part of a balloon release in memory of Mikey G.
Madi then toured around the course with Papa and Mommy in her VIP golf cart to cheer on the golfers.
After visiting the golfers she helped set up items for the silent auction.
Madison was so excited to see everyone at dinner! She loved that her friends went to dinner to support her and they had fun playing. The silent auction and 50/50 were also a big success!
Mommy and Daddy were so happy to speak to everyone in attendance and thank everyone for what they have helped do for Madison. All of her progress and achievements over the past year are due to the support and encouragement from the tournament supporters, family and friends.
Thank you to everyone who helped make this years tournament such a great success!
Madison had a fantastic day!!!!
Day 586: Full Circle
Madison had her first Children in Motion class this morning at Variety Village. Mommy participated in the same class 29 years ago! Madison liked playing musical hoops. Tiffany joined Madison to assist her in the class. The end goal is for Madison to be able to participate independantly. Tiffany did a great job at keeping Madison engaged, included and happy! Thanks Tiffany!
Mommy (on the right)
Madison
Madi Moves 
