Madison and Jack loved their weekend sleepover with Nana & Papa. When everyone was up this morning they met up with Aunt Nadia and Nate for breakfast. Thanks for holding down the fort Nana & Papa!
Madison had physio at the house with Claire this afternoon. A big focus in all of Madison’s therapies is to build up her leg strength to be able to wear her SMO’s more and more. Claire and Madison did lots of standing and walking work to help her continue to get use to them – much less supportive then her AFO’s but she’s getting better each time.
Madi spent her afternoon at March of Dimes doing Conductive education for her afternoon therapy. They did lots of work on standing up from the floor today which is one of our main focuses right now in all her therapies.
After MOD Madi headed for a ride with Max. Since her SDR surgery we have noticed lots of other positive changes, not necessarily just physical. She has really found her voice and confidence. Listen to her command Max in this video of her riding session today.
It’s so wonderful to still witness progression each and every day since her surgery. We are in the process of starting her 6 month check in which will be the beginning of November. We will be sending notes and lots of videos to St Louis to get more direction, focus/next steps.
Today was one of those days where you have to stop and think…who is planning this journey for us? we are clearly on this path for a purpose or plan…still not 100% sure why Madi was chosen for all of this but we’re hoping to figure that out soon. She is not responding again to her current dose of Meds for her kidney disease – Nephrotic syndrome. We are going to try a high dose for one more month and then meet with her specialist to discuss next steps. We also found out today that the colour of kidney disease awareness is the same as CP awareness and transplant awareness…green! Crazy!!!
Madi was back at Grandview today for some Pt with Kate after a long break. Goals for this block: standing up from the floor, learning how to fall, “off roading” with her tripod canes, introducing single point canes, work on length of step/stride and transitioning to her SMO’s.
Madi had a good day at school. Her literacy centres revolved around the letter ‘I’ and healthy eating – apples! In gym class she played soccer and ‘What time is it Mr Wolf’.
After school Madi & Nana hung out and then went to ballet where Madi and Kiera were partners in class!
Madi has been having a hard time lately with her Nephrotic Syndrome. She was responding really well to the steroids, but lately her protein numbers in her urine have gone back up. We have been decreasing the daily pill count, but had to start going back up again today and will see her specialist tomorrow to discuss what the next plan is. The journey continues…