Day 1,127: Slow & Steady Wins the Race

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!

Day 1,126: Back at Camp!

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!

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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.

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Day 1,125: Home From Surgery!

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

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

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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!

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Day 1,124: Discharge Day

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.

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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.

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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.

Day 1,123: PERCS Surgery

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

Day 1,122: A Free Day!

Madison’s team at the hospital had booked her pre-op stuff yesterday so that if they needed more lab stuff done or any other appointments they would still have today as an option before the surgery. They were fine with everything yesterday, which meant a free day today!

Madison’s day started with a trip to the St Louis Science Centre. She wasn’t so sure of the giant robot dinosaurs but she loved the discovery room where she painted, played with water, explored a space station, was a vet at an animal hospital and lots of other fun stuff!

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After some lunch, she explored some more and then headed for a shopping adventure at Target where she picked out her new backpack and lunch bag for school.

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It was a great day!

Day 1,121: We’ve Arrived!

Madi was up bright and early to head to the airport this morning. She was excited to be going back to St Louis, but is nervous for her surgery.

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The trip got off to a rocky start when the special assistance counter did not properly check our bag in and we got held at customs until our bag could be located….made it to the gate just in time for boarding!

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The flight was a bit bumpy with the bad St Louis weather, but it wa quick and Madison was awesome – coloured the whole time!

Once we landed we headed to pick up our car,  which ended up being an issue with the ID and booking card (long story with lots of eye rolling) so we cancelled that booking and jumped on a cab to the hotel.

After a quick lunch and bags dropped in the room, Madi headed to the St Louis Children’s Hospital for her pre-op assessment to discuss the issues she had waking up after SDR and to review a plan for her nephrotic syndrome. We had a very detailed meeting with the nephrologist, anesthesiologist and nurse. They had all her Toronto medical files faxed this morning and spoke with her nephrologist Dr Wong. The plan is to try and keep the surgery to under an hour and push only the fluid that’s needed. They did blood work and urine sample today to have a baseline of her numbers and will do the same the day after her surgery to see if protein is in her urine. So everything was very thorough and good to go. On Thursday for surgery she is not allowed anything by mouth after 5:30am, has to be at the hospital for 11:30 and surgery is at 1:00 (2:00 Toronto time).

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After a successful set of appointments and lab work, Madison headed to the Build a Bear at the Galleria – she was super excited because she watches YouTube videos of girls who have been to the same one because the St Louis Galleria location is the first Build a Bear ever created!

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She finished her trip to the mall with a wish in the fountain and dinner at The Cheesecake Factory – early to bed for this traveller!

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