Month: May 2017

Today Madi is 9 days post op. She was excited that she could bear weight on her casts today. Before heading to Physio she went shopping at target to buy some markers and fancy tape and stickers to make her casts a little less boring. She was able to sit in a shopping cart for the first time post surgery!

Today at Physio Madi was super excited to work with Erin who did her pre op evaluation. They focused on standing and walking today to get use to moving in her casts. She is still very hesitant and scared to use her walker and refused to today. She did standing and walking by holding hands. She also tried the total gym today for the first time that will be a great tool for building her leg strength. 

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After Physio Madi had her bandage removed from her back. Dr Park’s assistant said things are healing nicely and everything looks good.

When she got back to the hotel it was cast decorating time! Madi decided she wanted her casts to look like socks, so Mommy and Aunt Emily went to work. So much fun!

Madi and Jack had some free time this morning as Physio was cancelled and replaced with casting for today.

It was a beautiful, hot day outside so everyone headed to the zoo. There was not enough time to visit the animals today so Madi & Jack went for a ride around the zoo on the train. They did two loops around the zoo and then got some lunch. It was then time to head to the hospital. 

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Madi and Mommy went to the therapy clinic at the hospital to get her casts. Madi was serial casted to stretch her heel cord muscles and move her joints a little closer to their correct positions. She struggled to cooperate as it took about 1 hour and 20 minutes and her feet and legs are still very sensitive from the surgery so all the different textures, water and heat didn’t agree with her. She pushed through and made it to the end. Madi has to wear them for one week and then can take them off. Please send your positive vibes towards Madi for some sleep and comfort. 

Emily and Jack went on an adventure around Forest Park while they waited for Madi’s casting to finish. They walked almost 10km! 

Madi & Jack ended their day at a party at the hotel! Madi got to visit with her friend who had the same surgery as her!

Madi and Jack spent most of their morning doing crafts at the hotel to get in some hidden Physio. Madi is still a little tender in her back but is slowly becoming more confident and trying to move more.

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After some lunch and quiet time it was off to Physio at the hospital! Madi built up some confidence and with the promise of cookies after a good Physio session, Madison tried walking in her walker. She did some amazing steps!!

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Lots of walking = lots of cookies!

Jack loved going swimming with Mommy while Madi had some down time

Thank you to everyone who supported Variety Village today by buying a pizza at Pizza Nova! Madi and all the kids who benefit from the Village’s excellent programs really appreciate the support!

Today Madison is 6 days post op. It was her first day going to therapy as an out patient. 

She has been assigned two physios for the remainder of her stay in St Louis. At today’s session they measured her for knee emobilizers and she got her new pink canes! As yesterday, her time started out slow with some tears as she Is still scared about the pain she feels when moving, but it’s getting better. The focus today was building confidence with standing and walking and she tried out her Bambi legs for the first time with some assisted walking! 

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After Physio Madison was exhausted. She went back to the hotel to have some lunch that turned into a crying meltdown and time out. Most parents are prepared for the challenges impacting children physically after surgery, but the emotional change is not talked enough about. In the past 6 days Madison has experienced anxiety, stress, fear, anger, frustration, confusion and although she is a good communicator of her needs, she doesn’t know what they are right now. All of those emotions tied together with no sleep has lead to many tears and meltdowns. She tries so hard to hold it together and for the most part has a smile on and pushes through, but we know she is struggling and are trying to keep things as positive as possible for her. 

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To cheer her up and do something fun, everyone headed to the spa this afternoon! Madison’s hair was a nest of knots from all the days lying on her back, so we went to try and get it brushed out. They ended up having to cut the knots out they were so bad. She has a new look- a cute little bob! 

Jack also got his hair cut today! His first hair cut! 

After the hair appointment everyone walked around the little shops in the area, went out for cupcakes and then for dinner. 

It was confirmed today that Madison needs to wear night braces to stretch her heel cords so they were ordered for her today and she will have to wear them every night to bed. 

It was also confirmed today that Madison has to get serial casting done this Wednesday to also stretch out her heel cords. She will have casts on both her legs for one week. 

Today, Madi is 5 days post op. Her day started with breakfast and packing and then to her PT session. 

They focused on high kneeling and sit to stand this morning. Her transfers are getting better (not as many tears) and her strength is slowly building. 

After PT Madison went around the 12th floor to give out gifts to some of her fellow SDR Warriors and dropped off a massive bucket of sweets and treats for the nursing staff to say thank you!

Shortly after that it was time to go back to the hotel!

Jack was so excited to see his sister again! 5 days apart was hard for both of them.

Madi and Jack spent the rest of their day getting settled back into life at the hotel, went for a walk and did different activities in the room to try and hide some PT.

Thank you everyone for all your love and support this past week! It’s so nice being back at the hotel.



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!