Madi Moves

Madi’s Day 3 went better then expected, but her night was not so great. They suspect that her days and nights have flipped and she is not able to sleep during the night. She is not responding to melatonin and the Valium she has to take for her muscle spasms is acting as a stimulant instead of a sedative. Her swelling is still hanging around and her blood work came back clear, so no known reason for the swelling. 

She headed into her day 4 with only 1 hour sleep in two days. Considering she was so sleep deprived she handled her double Physio like a champ. They tried all kinds of different positions and guided her through play. 

During her break inbeteeen sessions she went around the hospital with Nana and ran into Belle from Beauty and the Beast.

Madison is extremely weak. She is able to do things right now equivalent to when she was just under 1 year of age. We know this will improve daily, but it is still hard to see. Most movement causes her pain and the tears make her eye swelling increase. She is a warrior and powers through. Needless to say we are looking forward to being back at the hotel. 

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Mommy & Madi were exhausted at the end of the day. Usually at bed time Madi talks about her day, and after reflecting on it tonight – we can’t believe how much happened!

Madi’s day started at 6:00am with the removal of her cathidore and leads. They gave her a dose of oxy to bridge the gap from epidural cathidore- which was also removed and receiving oral pain meds.

7:00 her breakfast came and then took some pain meds to get ready for her first Physio.

8:00 was her first Physio session, bedside. It consisted of learning how to transfer from bed to stroller and going for a walk in the stroller to get use to gravity again.

After the busy/early morning, Madi passed out for 3 hours. When she woke up she had a quick lunch and then headed to her first PT session in the gym. They did some rolling, sitting and went through her home stretching program. She was in pain but managed like a champ.it ended a few minutes early because her face was very swollen today. Dr Park visited to check on her swelling, took her off IV fluid and have benadryl. 

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Later in the day she was still very sweaty from PT so two of her nurses gave her a bath in bed to freshen up and try and brush the nest out of her hair.

She was thrilled to receive a book tote with activities today! Thank you Brian and Christina!

After dinner Madison had to wait for the lab to visit for blood work so she and Mommy went to check out the garden!

It was wonderful seeing the sun out today and no rain! Aunt Emily and Jack also enjoyed some outdoor time today!

Today was Madison’s last day that she had to lie flat on her back. She did a great job!

Her day started with an early visit from neurosurgery and the pain management team to make sure she was comfortable and ready for a day on her back. Next, the hospitals orthotist visited to cast her legs for her new braces. She had to choose colours and patterns for two different pairs. She decided to go with the pink & purple camo print for her tall ones and bugs and butterfly’s for her short ones. She will be assessed by Dr Park & PT tomorrow to determine if she will need night braces for sleeping and serial casting next week.

Madison spent the rest of her morning with Daddy, Auntie Em, Grandma & Grandpa who helped keep her happy and busy on her back.

Mommy, Nana & Jack went to do some shopping and get some things for Jack. Tim Hortons was found 5 minutes from the hotel!!! 

Madi also had lots of special visitors in her room today, including these Star Wars characters…. May the forth be with you!

After some lunch, Madison was able to chat over FaceTime with her friend Shannon from CBC who did a follow up report on how her surgery went. It was on the news this evening at 6pm in Toronto, as well as this web article. Thanks Shannon for all your support!!

CBC News Article Link 
Madi has so many amazing people supporting her journey! 

One of her dreams is to be able to jump and skip rope, so when she got this video today from trampoline Olympic gold medalist Rosie MacLennan-she was thrilled! Thank you Mike Wilson, The Ultimate Leafs Fan for making this happen! She loves to watch Rosie jump high into the sky so this made her day!

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Madison’s exciting, last day on her back finished with a visit from Nana while Mommy went to eat and take a break. They read lots of books and went to bed at a decent time. Tomorrow is a big day – Madison will be able to get out of bed for the first time and she is excited to give Dr Park her frame she made him!

Madison slept most of the night and all morning. She woke up around lunch and ate a bagel and some apple juice. She is talking for the first time clearly and now knows she is in the hospital. She’s ok so far but asks to get up and go back to the hotel to play. She is itchy so she is on some meds to help with that. She snacked almost the whole day: crackers, bagels, gold fish, fruit, cookies, Popsicles, Cheerios and lots of apple juice. She is able to roll herself onto her side to prevent bed sores and is now in diapers as her plumbing has kicked back in early to everyone’s surprise. Thank you to Uncle Brian and Aunt Christina for her pink piggy! Thank you Aidan for the balloons! 

Jack stayed at the hotel today to try and recover and feel better. He needed a day off from all the craziness and it did him well- he is much better then yesterday.

Papa said his goodbyes to Madison today and is on his way home tomorrow morning. Thanks for all your help and see you in a few weeks Papa!

The best part of today, considered Day 1 is seeing and feeling Madi’s legs! Spasticity free! Her legs are squishy and soft and move so easily. Even the way she lies in bed looks different. She is much more relaxed and lying flat instead of crunched up in a ball

Today was the day! A day we had been dreaming about for the past year, but in our prayers: a day we had dreamed of since we received Madison’s diagnosis when she was 13 months old – we had always been looking for something more to help Madi have a chance at life pain free and spasticity free. Dr Park was our answer and Madi had her surgery with him today.

Madi woke up bright and early and went straight from her pj’s in bed to the van. She arrived at the hospital at 6am to check in. Once she went into her room she was greeted by many doctors and nurses who were on her team for the day . She said her “see ya laters” to the family and then after picking the flavour of her mask Mommy walked her into the OR. Mommy stayed until she fell asleep.

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Madison was in surgery with Doctor Park from about 7:30am-11:00am. He said she did very well and is happy with the outcome. Madison woke up at around 11:00 and then fell back asleep. When she woke up a second time she was a combination of scared, confused and agitated. She wanted out of bed and to get off her back. She has to stay flat on her back for three days. It took 3 adults to hold her down. She cried hysterically for over an hour trying to rip off every cord possible. They decided to try a few different sedatives to calm her down. They tried three different things that seemed to calm her but also made her breathing much slower. She ended up staying in recovery much longer than anticipated so they could monitor her breathing. They were able to get everything under control and comfortable and she is now in the room she will be in until Sunday. It wasn’t the best reaction to the anaesthetic but very comparable to other children’s experiences. She has woken a few times with leg spasms (normal from the surgery) and had her first cup of apple juice and some crackers. She has been sick once but is mostly sleeping. When briefly awake, the things she has asked for are: Skye stuffie, purple iPad, a bagel and apple juice.

Thank you everyone for all the messages today it’s been incredibly supportive!

Today was a wonderful day. During a time that most people would feel stressed or anxious, we felt the most calm and ready. Dr Park met Madison today and assured us that the decision we have made is the best for her and her future. He was wonderful! Caring, calm, funny and so good with Madison. He watched her move, felt her legs, talked about her medical history and told us that all his original predictions for her are still the same. Having the surgery will allow her to have better postures, smoother transitions, be pain free and spasticity free and ultimately walk independently in all environments – in fact he feels she will be walking within the next year and believes she will make progress quickly. He also believes she will be able to be active in many different physical activities throughout life. Once the spasticity is removed, he will be able to get a better assessment of the length of her heel cords and hamstring muscles and determine if she should have serial casting done. He will know on Friday and if she needs it done she will get the casting next week. We will travel back to St Louis at her one year anniversary for a follow up and also see if PERCS muscle lengthening surgery will be needed when she is 5. 

Madi had her Physio assessment today and ordered new AFO’s, SMO’s, night braces, pink canes and walking sticks. 

Madison was awesome today! She was brave and did whatever was asked of her. Even though she is only three, we feel she has a very good idea that all of this that is happening right now will help her and she is very trusting of that – such an amazing little girl!

Thank you to everyone for all of your messages today and all of your support and love since the start of this journey almost a year ago. 

We are so ready for tomorrow!

We would appreciate prayers and well wishes starting at 7:30 tomorrow morning.

Xoxoxo

Madi headed over to the St Louis Children’s Hospital today to map out where everything is and to get comfortable with everything on her own time and schedule. She loved seeing all the cool things around the hospital like the trains on the ceiling, animal art everywhere and how big and bright it was.

On the way back to the hotel she picked up some essentials for her week stay at the hospital and some lunch for everyone. 

Madi and Jack spent the rest of their day hanging out at the hotel to try and get some rest for the busy week ahead.

The bad weather finally let up for a bit and Madi was thrilled to spot a double rainbow! It was a sign for a good week ahead.

Bag and gifts packed for the morning when Madi gets to meet Dr Park and his team for the first time! 

Madi & Jack were super happy to see Aunt Emily arrive after breakfast this morning. She will be spending the next three weeks  in St Louis to be along side Madi in her big adventure!

 While everyone was getting settled and organized for the day, Madi did some stretching.

It was then time to explore St Louis in the rain so everyone headed to the Magic House! It was recommended for Madi to frequent there while trying to get back on her feet after surgery, so we wanted her to check it out and feel comfortable so when taking her back for some PT she will hopefully be motivated. Everyone had a blast and Madi already wants to go back. 


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For dinner everyone checked out Union Station and had dinner at the Hard Rock Cafe. 

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Madi and Jack spent their day shopping around town picking up things for the hotel and to get ready for next week. It poured rain all day so it was a good day to shop and get things done. Madi’s favourite part of shopping was going to the Disney outlet to pick up some new PJ’s and a special Rapunzel doll!

Mommy had a pre-op call with a nurse today to confirm details for Madi’s surgery. They have confirmed: surgery Tuesday May 2nd, 5:45am arrival and her surgery will be from 7:30am – 11:00am. Her assessment with Dr Park will be Monday 8:30am.

Madison assisted Papa with his work today and helped Nana with her medicine.

Madi has been so excited to swim since arriving in St Louis so her and Mommy went to the pool before dinner. Madi did lots of water running, stretches and kicking to try and loosen up a bit.

Madi and Jack were in great spirits this morning. They went down for breakfast first thing and then toured Nana & Papa around the hotel. After some quiet time it was off to Busch Stadium to watch the Blue Jays take on the Cardinals.

Madi proudly waved her sign around whenever she had the chance. At the start of the game she and Papa went to watch the bull pen warm up and say hi – so they gave her a ball!

Many people in the seats asked about Madison’s surgery and wished her well. Jack ate the most food he has ever had in one meal and Madi cheered on Bautista for most of the game. Everyone was very helpful and so welcoming, it was a great game!

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