Madi had a jam packed day of therapy today…no school…3 hours of Conductive Ed…riding with Max…..massage with Shannon…she did a great job and worked hard!
Highlights were: lots of single point cane practice, lunch and some fun with Janine & Suzanne, amazing bubble blowing on Max & Shannon and Madi did awesome work to get many muscles releases with no pain!
Madison was diagnosed with nephrotic syndrome about 6 months ago. She has been on many different doses of steroids since then, trying to ween off and get in the clear. She was in remission once, and then got sick only a few days later and relapsed. Her doctor had a goal of getting her off her medication about 3-4 months in, as any longer could be dangerous long term. We were approaching 6 months and were very nervous if she continued to not respond. About a month ago we started a strategic plan to get her off. She slowly moved down from 7 pills a day, to 4, then 2 and finally one. She’s been negative for about 3 weeks on this plan and hasn’t needed medication for about a week….which means we are back in remission! Madison was thrilled to hear no more pills everyday! We will do our best to keep her healthy and see how long her kidneys can handle on their own with no intervention.
After school, Madi and Nana headed to Grandview. Madi worked hard with Kate and Emily. Some of her newest exercises are to develop good upper body strength so she can learn to hold her single point canes with a good grip and press firmly into the floor to keep her canes stable.
Thank you for all the support!
News in the CP World!
“University Medical Center has received permission from the FDA to offer cord blood therapy for conditions like autism spectrum disorder and cerebral palsy under an expanded access clinical trial. This protocol establishes an umbrella clinical trial NCT03327467 registered on 31 Oct. 2017 which enables children who have these neurological disorders to receive therapy with their own cord blood or cord blood from a sibling, regardless of whether they qualify for a targeted clinical trial.”
Stem Cell Therapy at Duke University Link
Madison had a great day at school. She practiced for her Christmas Concert, practiced printing in a writing centre and her school pictures were sent home! Madi and Nana had a nice afternoon before going to ballet.
Madi and Jack had a great weekend with Auntie Em….
………and today it was back to work.
Madi was tired at Jo-Anne’s but worked hard…. Mommy just had to stay out of the room.
Madi and Jack headed to VV right after school for physio with Stephanie. Madi was pretty tired from school so she wasn’t on best behaviour, but Stephanie did an awesome job redirecting and getting the job done.
After physio, Nana came to the rescue with dinner! The kids gobbled up some chicken and then headed to the pool. It was PJ night at swimming lessons. It gives kids the opportunity to experience being in the water with clothes on in a safe environment so if they are ever in an emergency in the water fully dressed, they have some experience with it. Mommy got in for a swim with Madi & Jack once their lessons were done. It’s always so much fun swimming together.
Today was a new routine for Madi. She will no longer be going to school on Thursdays and instead will go to Conductive ed at MOD. She spent three hours there today and loved it!
Later in the day Madi got all dressed up and then headed to the VV Gala. She wondered around the room saying hello to people and giving out high fives. She loved twirling in her dress. She helped Mommy give a speech about our families roots and history with Variety Village and thanked everyone who donates to Variety regularly. She said hello and thank you to everyone using the mic and loved seeing all the pics of herself. It was wonderful sharing how special of a place it is for us and how we will always be involved and looking for more ways to give back.
After school Madi and Nana hung out and then went to Grandview for physio with Kate. Madison was thrilled to see Emily there who is on placement right now and learning from Kate – it was an awesome surprise for Madison.
While Madi was at Grandview, Mommy & Daddy were at Madison’s school for PT interviews. Her teachers reported that she has adjusted well, follows routines, is highly social and is working hard. She knows all her letters and most sounds and has excellent 1:1 correspondence in math. She shows empathy and is very caring. Next steps is continuing to work on her fine motor skills like printing.
When Madi got home, she headed to the basement to workout with Mommy! Now that Madison has her new home program, she and Mommy will do it together to motivate each other.
Part of Madison’s home program from Walk This Way is using a tens machine in combination with different exercises. We can’t wait to get started!
Find out more here: Pub Med Journal Link
Madi had her first session back with Jo-Anne today after taking a break to work with Jenn & Mike. She was noticeably stronger and was showing off her little muscles. It was so wonderful to see! Jo-Anne really pushed her to try new things and they did great work together.
Madison and Ryan have been working a lot on body position and alignment in the pool. She is learning to do “basket & escape” to learn how to be flat on her back with hips up and then bend at the waist to recover. Super proud of her body awareness!
Madi Moves 