Author: katherineambos

And just like that, Madi is 6 years old!

Its gone by so quickly!

Madison started her birthday weekend with a Friday night dinner celebrating Grandpas 65th and her 6th.

When Madison woke up Saturday morning she went straight to her iPad and searched for a birthday song. She then woke up the rest of the house by blasting “Happy Birthday” from her iPad while she also sang it at the top of her lungs. She then climbed into bed with the fam and everyone looked through her baby pics and other birthday pics which she and Jack got a kick of. It was a great way to start her birthday. She then opened her gifts and had a nice breakfast.

It was then time to head to her birthday party! Madison decided she wanted to have a spa party this year. They ate waffles with every topping under the sun and cupcakes too. They then went down to the main spa area to have fingers and toes painted, makeup on, and princess outfits on to start a dance party! It was an awesome party and it was nice meeting some of her new classmates and watching her interact with her girlfriends.

Once the spa was done, Madison headed to Pam and Medford’s house to celebrate. They had a nice visit and she was spoiled with gifts.

It was then time to meet up with the boys at a campsite. Madison LOVED camping this summer and asked to camp one more time before putting the camper away for the season. She had a great celebration playing games, eating cake, roasting marshmallows and having a sleepover with Nate.

The next morning everyone went out for breakfast to finish off the celebrations and then went to the Village for a swim with Ryan.

Madison works so hard and rarely gets to choose how she spends her time so we told her she could pick anything to do for her birthday and then we ended up doing it all! Thanks to everyone for all the birthday messages and gifts, Madison had an amazing birthday!

This week marks the start of fall activities that everyone has been looking forward to. Tonight was Jacks first sea turtle swim class and Madison’s first meeting back with Sparks. Thank you Pam for sewing all of Madison’s badges onto her sash just in time for tonight!

 

Madi had an awesome first week back at school. She started Grade 1! She no longer has a full time EA, she works with two amazing ladies part time, scattered throughout the day. Her recess is now in the ‘big yard’ which she has been loving. She practiced her reading and counting each night for homework and the highlight of the week was her drama class which is every Friday. Thanks to everyone who helped us successfully survive our first week back!

 

Madison and Jack had a wonderful summer full of family, friends, new experiences and lots of time outdoors. Madison has many firsts this summer including camp at Variety Village, camping in 4 different Provincial Parks, learning to stand up and walk on grass barefoot, jumping off the side of a pool by herself, doing consecutive jumps on a trampoline and showing more independence with her self help skills. Jack also had many firsts this summer. He played tball with Sportball, rode his first rollercoaster, went to camp, started preschool, learned to catch minnows, and can now dress himself. We are so proud of all they accomplished and are thrilled with how well they spent their summer together having fun and strengthening their bond with one another. Today, their last few hours of summer was spent drawing with chalk, having a dance party, playing outside with bubbles and scooters and enjoying a rocket popsicle. Tomorrow starts a new adventure… Grade 1! Which means less support at school… no more daytime therapies, more activities of Madison’s choice and lots of new experiences!

Madi had a busy week with some highs and lows – but we made it to Friday!!! Everyone came down with a cold so it was a slow week but Madi made it through March of Dimes camp, physio with Emily and Stephanie, a backyard hangout in Cousin Stephanie’s pool, new braces, hip xrays, a play date, massage, strength training, her celebrating me social work group and a trip to the Oshawa Zoo.

Yesterday was a magical day. It was the annual SDR Ontario picnic which is an event where all families of children with cerebral palsy who have had SDR gather together. New families who are looking into the surgery also joined the event and children from Shriners, Sick Kids and St Louis were all together! What made the event extra special was having Dr Park from St Louis attend the picnic. He flew in for less then 24 hours to visit with his patients and then enjoyed an afternoon bbq. We didn’t let the rain get in our way – we had yummy food and the kids had a blast with lots of activities. We presented Dr Park with a Team Canada hockey jersey with the number 39 on the back which is the number of Ontario patients he has performed surgery on. Madison’s favourite activities were the face painting and the karaoke. We were lucky enough to have a private visit with Dr Park prior to the bbq to discuss Madison’s progress. We will post with more details in the next few weeks once we know more, but he has asked us to re-connect with Madison’s orthopaedic surgeon in St Louis, Dr Dobbs to discuss another lengthening surgery, heel cords. We weren’t totally shocked that she needed some more help, but a bit taken back as her previous lengthening was only a year ago. Madison has grown so much in this past year which has not been good for her walking. Unfortunately this is something she will always be up against because of CP. He really feels this will help with her balance and confidence when she is able to get her heels down. The first step is he would like up to date hip xrays in standing position to determine if her hips are stable enough for another surgery. We will then determine next steps. We really enjoyed sitting down with Dr Park, he offered us many stretching ideas and things we can do to help Madison. Overall he is very happy with her progress and we are grateful to have been able to check in with him. More details to follow…

 

 

Madison and Jack just got back from 3 days of camping and loved every minute! They ventured north to Six Mile Lake Provincial Park for a weekend full of swimming, s’mores and board games.

This was our first time booking an accessible site at a provincial park and it was a fantastic experience! The campsite had a concrete slab with accessible washrooms and showers nearby. We had an accessible picnic table which Madison loved. The majority of the paths that lead to the beach and other areas to explore were paved with no stairs and Ontario Parks offers discounted rates with an accessible parking pass. Madison did an amazing job navigating the different surface in her canes.

We have plans to visit 3 other Provincial Parks this summer in our camper. We decided this would be a better option for Madison’s mobility and we were right – she was able to be independent in the space we had and did great!

Madison and Jack swam lots, played in the sand, explored the grounds, ate lots of popcorn & s’mores and played Kirplunk and Bingo. They learned how to build a fire, they did their dishes in a bucket after meals and slept like champs through a massive thunderstorm.

It was an awesome weekend exploring the beauty of our province and spending some much needed family time together.

 

Madison has loved the water since her first swim as a newborn. The water is her happy place where she feels in control and free.

Today Madison had an excellent swim with Ryan. She was confident and did really well listening to his feedback and trying new things. She was so happy! I realized while she was  swimming that it’s been 4.5 years since her first lesson with a Ryan…here is little Madi at 1.5 years old!

 

And today’s swim…

Madison also had a great session at Smile Therapy this morning. Her ankle was a bit sore from falling this morning but Jo-Anne helped her with some tape and she did great!

Mr Jack had a blast at Sportball tonight. They played their first soccer game and Jack ran hard and laughed the whole time.

Madison has been away from March of Dimes for about a month so she was very happy to return today for Conductive Ed camp this week! Jack helped pick her up and then the two spent the afternoon in the pool.

Tonight Jack had Sportball and did great!

Madison is a trooper and pushed through a physically demanding day. Camp has been an amazing experience so far but it’s been exhausting for her. Today’s camp skills included swimming, throwing skills, jumping skills, time outside and lots of camp games in the gym. Madison said the best part of the gym is when they all raced around the track. After camp Madison had an awesome swim lesson with Ryan. They focused on backstroke, floats with rolls, deep end swimming and kicking. After swimming Madison had a great workout with Melissa in the gym – she walked across all 12 treadmills sidestepping to avoid the lava on the floor lol.

Jack had his first morning camp today! The theme this week is sports. He went with his buddies and had a blast. After camp Jack took Rusty for a walk, played at the park and then met up with Madison at Variety Village. He went for a swim and then played baseball in the gym while Madison worked out.

It was a super active day for Madi and Jack so they were in bed asleep by 6:30!

Madison and Jack had an awesome day!

Today was Madison’s first day of sports camp at Variety Village. They started their day with swimming and then went to the gym and worked on balance skills with an obstacle course, played some camp games, worked on climbing and throwing skills and finished the day with free time outside. She loved it! It was a full day of fun – 7 hours of moving and grooving! She said the best part of camp this week is she gets to swim everyday and spend lots of time with her cousin and her friends.

Tonight was Jack’s first night of Sportball! It’s  a mix of soccer skills and t-ball skills at a park in our neighbourhood. Madison cheered him on! Jack loved it and did really well. Tonight they focused just on soccer so Jack was a little disappointed as he LOVES baseball! But he is really looking forward to going back next week.