Author: katherineambos

Wow! We can’t even believe that Madison’s life changing surgery happened 2 weeks ago as of today!

Madison is kicking butt at therapy and becoming more confident and mobile each day that passes. Today she did a total of 5 minutes on the treadmill and spent her whole hour of therapy on her feet. 

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Madi loves exploring the hotel in her walker! It’s been the best Physio! 

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Madi Moves was represented on the ice tonight where the St Louis Blues play! Aunt Emily got to paint the ice before melting it for the end of season – thanks for representing Madison’s journey!

We love seeing our Madi smile and happy enjoying her St Louis adventure!

Day 13 post op:

Madi did a great job on the treadmill today during Physio. Her legs are starting to look more fluid as they move- we can’t wait to see them when her casts come off Wednesday!

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A big thank you to Aunt Emily & Nana for entertaining Madi & Jack for the day while Mommy recovered.

Day 12 post op:

Madi & Jack gave everyone big hugs and kisses this morning for Mother’s Day. They are two amazing little humans that Mommy feels extremely blessed to have in her life.

After breakfast everyone headed to the park for a play! Inside Forest Park is a fully accessible playground designed and built by Variety the Children’s Charity. It felt like home! 

Madison did some amazing standing and walking in her walker at the park – it was the best Mother’s Day present ever!

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It was super hot in St Louis today so the park didn’t last too long. Everyone headed for some AC to have some lunch.

The rest of the day was spent at the hotel recovering from the heat. While Mommy, Jack and Nana napped, Aunt Emily & Madi did some crafts.

Jack is feeling much better – his new favourite game is to sit on his sister.

Madi did some great Physio before bed! She also learned how to play go fish.

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Day 11 post op.

Madi’s first night last night wearing her knee imobolizers did not go so great. She lasted about 3 hours wearing them and then woke up having a panic attack and wanted them off. She ended up wearing them a bunch during the day today to try and make up the missed time. Fingers crossed for success tonight!

Madison is not the only one who is a patient at Children’s Hospital- Jack has not been feeling well so Mommy took Jack to get checked on and he has been battling a double ear infection. The doctors were great and had him in and out quick. 

Madi is not scheduled for Physio at the hospital on the weekends so the time is spent at the hotel trying to be creative with different Physio activities to keep her moving and progressing.

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During one of Madison’s adventures around the hotel today she got a delivery of mail. A get well soon letter from Great Grandma Lynch and a package from St Brigid School arrived. The Jk/SK class sent Madison a package full of cards that she decorated her bed with. Thank you Rosina and the kindergarten class at St Brigid!

Today is day 10 post op

Madison had an excellent Physio session with Blaire bright and early this morning. They warmed up on the swing, did a full lap of the gym in her walker, did some playing while standing and rode around on the bike. Madison was still very hesitant in her walker and took lots of coaxing, but she did it!

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Madi & Jack then went with everyone to Grants Farm – home of the Budweiser Clydesdales Horses! They checked out the stables and their newest foal and then fed some baby goats bottles of milk and rode the carousel.

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The rest of the day was spent doing some Physio in the hotel. Madi is slowly moving more and more and is not as scared or hesitant as a few days ago.

Tonight is the first night Madi is wearing her knee immobilizers to bed! Super stretch! Fingers crossed they stay on all night. 

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.