Madi Moves

Today was Madison’s last day of conductive education camp at March of Dimes. She absolutely loves going there for camp and spending the day with their amazing staff and a great group of friends. Madison’s rehab has been going very well and her camp has been a big reason why. They challenge her in a fun and supportive way. She loves all the activities and it’s helped motivate her to keep working hard. She will be going back next week for some 1:1 sessions and then will be participating in their fall programs once school starts. Thanks for a great summer March of Dimes!

Madison was super excited for the theme at camp today…. princess dress up! She packed 6 different dresses because she couldn’t decide. She ended up choosing Ariel and later told us she hates that she can’t swim right now while her legs are healing, so she wanted to pretend to swim. Being at March of Dimes Camp has been an amazing way for Madison to get back on her feet and work hard, while having so much fun!

After camp, Madison headed home for some quiet time before heading to the basement for some more work. Claire was over today to do some work on Madi’s walking, balance, getting up from the floor, core work and some stairs. Madison was excited to show Claire the newest thing she has been working on… standing up from the floor! Every time she did it, it got easier and easier for her and she was thrilled, laughed, kept asking to do it again and again and wanted to show Jack. It was such a powerful and rewarding moment to witness Madison being successful with this skill.

It’s 11 days after PERCS and she’s up from the floor and walking! Madison has never been able to do this…she has attempted this skill hundreds of times over the past two years and today was the day it clicked for her.

In that moment all I could think about was her team of people….her specialists/therapists/cheerleaders/family… a group of 6 who have been with her along the way…they have supported us, challenged her and taught her everything needed to be able to rise up from the floor today and look Jack straight in the eyes and laugh. We are so grateful for the team of people Madison gets to work with each week. I don’t know where we would be without them.

After the kids went to bed, the first thing James and I did was sit down on the couch and talk about our amazing Madison…the second thing we did was email her group of 6… her amazing therapists, to thank them and share this video from today.

Madison is now 10 days post op from PERCS. She is feeling good and is starting to get more comfortable with her movements. She at times is happy and excited by her “new legs” as she calls them, and attempts things that are coming as a surprise to us. Yesterday, she spent almost 30 minutes trying to stand up from the floor – something she has never been able to do – and with some aids to help her, she did it! and she was thrilled!

 

10 days post op also meant taking her bandages off and having a shower for the first time! Things are looking good.

Madi spent her day at the 3rd Annual Ontario SDR picnic! It’s always such a blessing getting together with other families walking the same path as ours. The theme was super heroes – very fitting for all the kiddos there today. Madi loved playing with her friends on the playground and decorating her cape!

Madi enjoyed a great day at camp. She did lots of walking and loved the pictures she created. She also loved seeing her brother at pickup and was excited to walk out of the building with him.

After some relaxation at home, Claire came by the house for another awesome PT session. Madi has shown improvement even since yesterday and she started using her canes again!

Madi took a day off camp today to catch up on some appointments and to get started on some 1:1 physio time.

First up was a visit to her nephrologist Dr Wong to go over how her surgery went and to see how she’s responded… no protein spilling and clear pee makes for a great visit!

Madi then went to Grandview to see her physio Kate. They haven’t worked with each other since the end of April so it was great to catch up and Kate was very happy with how Madi was doing. They played lots of fun games while working on sit to stand, side stepping, wiggling her feet and toes and some walking!

After a nice lunch and some quiet time, another PT’s of Madi’s, Claire came to the house to do some work. We have scheduled lots of 1:1 stuff daily over the next few weeks but with lots of breaks and smaller bursts to help her gradually work back to where she was before surgery and build endurance. They did lots of great work together and had some good laughs! It’s so nice seeing Madi enjoying her new legs.

Madi had another great day at camp and already was able to do more then yesterday! She did lots of standing and walking in her walker and today she attempted walking up and over wooden boxes. She also decided to try and walk out to the car after camp all by herself, and after a few rests she made it all the way to the car. Slow and Steady!

5 days after PERCS looked really good!

Madi was happy to be back at camp today at March of Dimes, especially because a bunch of her friends are there this week too! She was able to manage a full 6 hour day with lots of standing and walking practice. With about an hour to go, her legs were starting to get sore so she needed some Tylenol, but other then that she was great!

Once she got home she wanted to practice with her “new legs”. We couldn’t believe it – we for sure thought she would have been too exhausted, but she went for it! Madi is only 4 days post op and she continues to blow us away with her determination and inner strength.

Madi was super excited to get home to these two on Saturday!

She spent her last day in St Louis sleeping in, packing and getting her nails done. Bye bye St Louis! Thanks for everything!

Sunday was her first full day at home. It was full of highs and lows, which was expected. She was happy to be playing with Jack again which was huge motivation for her. She stood several times and used her walker a bunch to get around the house. She even did some walking holding Mommy’s hand and tried to ride Jacks bike. She was also incredibly frustrated with how much she needed help with and how hard some things were for her like pulling up to stand from the ground. At the end of the day she was so exhausted that she fell asleep at the dinner table. We told her this morning what happened and she didn’t seem to care – she just wanted to get to camp today! Rehab Day 1 starts now!

 

Madi was woken up from her hospital bed at 5am for Dr Dobbes team to check her legs and then give her clearance to be discharged. She ordered some breakfast, got changed out of her gown into some real clothes and then got ready for PT. When she is sitting, crawling or moving around the ground she is fine – no pain what so ever. When she weight bares, stands, walks – whole other story – she experiences a high level of pain and is incredibly weak and has to sit. She is such a tough cookie – handling it all right now by rotating through Tylenol or ibuprofen and hasent needed her oxy script yet. Once she is on her feet more in the next few days she will use a bit more help from her meds to help take the edge off to help her get moving again. She is to wear her high braces for the next 6 weeks whenever she is on her feet. Her bandages will come off in 10 days and then she can take full baths and go swimming. Starting Monday she will start her rehab program that will run 6 days per week for the next 3 months. She will then send videos to Dr Dobbes to get his input on how she’s doing. The focus everyday will be stretching, night boots, knee mobilizers, standing, walking and building overall strength. If she needs more time when school starts, we will delay the start of her school year to focus on her rehab. We were told her strength and abilities prior to surgery will return anytime between 4-8 weeks. Already today, from morning to afternoon she is more comfortable and willing to move more.

 

Once PT was done Madi was thrilled to leave! She headed back to the hotel to have some lunch, colour, nap and then headed over to the zoo. It rained on and off so we took our time seeing different animals, riding the train and then the carousel. She then headed back to the hotel for dinner and bed.

Thank you again for all of the messages of support! I have read all of them to her and she is so happy to have so many people wishing her well.

Madison was up bright and early (4:45am) to have some breakfast before her cut off eating time before surgery. She thankfully fell asleep after she ate a little to get some more rest.

Once she was up for the day, she kept busy colouring and then went for a swim. She loved the hotel pool and didn’t want to get out. She then had a shower and headed to the hospital.

Not too long after arriving at the hospital she started getting hungry so thankfully she didn’t have to wait much longer. Madi was a rockstar- did everything the nurses asked, got dressed in her gown, took some meds, cleaned up and met with the team taking her to the OR.

One of the best moments of Mommy’s day was hearing the response Madison gave to one of the nurses. They were asking Mommy lots of questions about Madison’s nephrotic syndrome and any allergies etc. Then one of the nurses asked “Can she walk unassisted” to which Madison replied not missing a beat “well that’s why I’m here.” Haha it was pretty funny how serious she was about her answer.

Madison was super brave and made it all the way to the OR doors with no tears. Once Mommy had to leave, Madi had some tears but she was in great hands.

Her PERCS surgery only lasted about 35 minutes and she was out and in recovery within the hour. She was in good spirits when she woke up and inhaled 2 popsicles right away.

The first few hours were spent sleeping on and off mixed with nausea but overall in good spirits. Around dinner time when she finally wanted to eat, the hunger came on fiercely and Madi had a few hours of agitation, tears and some high emotions. After the nurses helped to calm her down she ate some food and felt more relaxed.

We decided to get out of her room to change things up so she went for a stroll in her stroller. On the way to the garden she ran into her buddy Ibrahim who had SDR a few weeks ago. They met in the playroom and had a nice visit colouring. It was so nice seeing some familiar faces from home.

Madison then headed to pick out a treat at the cafeteria, read some books and then went to bed. Overall it was a great day – Madison was super brave and has barely needed any pain meds. Dr Dobbs stopped by for a visit and was very pleased to see how well Madi is doing. He said everything in surgery went very well and he is looking forward to see how this will help Madi continue to progress. We are so thankful for all the messages and calls of support today- thank you everyone! And a big thank you to Dr Dobbs and his team for a successful day and Madi’s “icing on the cake” that PERCS will give her.