Month: October 2015

1 Year ago today was the day Madison was diagnosed with Cerebral Palsy. It was a Tuesday afternoon at Grandview. Madison had been doing PT and OT for a few months prior to this appointment, but at this point we had no conclusions as to why she wasn’t meeting her gross motor milestones other then the fact she was born premature. Our appointment was with Doctor McDonald, a Developmental Paediatrician. Like many other appointments in the months prior, she asked us Madison’s birth story, health records and concerns we had. She also read through various reports from her PT, OT and other specialists Madison had seen as part of the preemie follow up care offered by the province. At this point we were not blind to the fact that perhaps Madison’s developmental challenges were not just developmental, but that there could be a neurological reason why things weren’t coming as easy to her. Also, from our background with working with kids in Special Ed environments and Variety Village we also had thoughts of other possibilities, but never seriously looked into those. As the doctor measured Madison’s range of motion with her joints and muscles, had her try and sit and do different activities, we could tell by the look on her face that she was confident with what was wrong. She started telling us about all the therapies that would be important for Madison and the things she may or may not be able to do based on her physical challenges. She seemed to skip over the diagnosis part and discussed CP as a possibility. So we just flat out asked. “Does Madison have a neurological disorder? Does Madison have CP?” She replied yes and then continued on with discussing next steps. From that point on we surprisingly didn’t have any emotion. No reaction. But everything was blurry, yet we continued talking with her and coming up with a plan. Our immediate reaction leaving the appointment was…”OK – now what? Let’s have a family meeting…let’s get things in place…let’s book more physio…let’s start filling out funding forms…etc.”  We dropped Madison back off at daycare and headed back to work. After driving alone for a few minutes our minds went to a dark place and James and I called each other at the same time. We had a good cry over speaker phone and talked about all the things we didn’t know if she would be able to do like would she be able to ride a bike? play on a sports team? and then our thoughts went to even more basic skills that brought on even more tears and concern…would she be able to sit by herself? would she ever be able to walk? would she always be behind? would she have friends? Would this effect her speech? Would she be able to communicate? Our conversation ended as we each arrived at work. I sat in my car in the back parking lot at Branksome and cried for about 20 minutes. I remember watching the kindergarten class playing in the playground and how hard that was to see. For whatever reason, a few kids that we had worked with at Variety Village came to mind. How hard they tried to play games, but how happy they were. I called Madison’s daycare to set up a support meeting. For whatever reason those memories were all it took. From that moment forward we have had a few tears, but we have been positive and doing everything possible to keep moving forward. We haven’t looked back.

These pictures were taken a year ago – the week of Madison’s diagnosis.

Looking back on a year ago and the dark moments we had to go through – it really was Madison and her awesome personality, motivation and willingness that moved us forward. She is our shinning star and has brought so much joy and inspiration to our lives. Looking back on the past year it is amazing to think about everything that she has achieved. All of her therapies, doctors, specialists and most importantly her amazing family and friends that have been so supportive and generous. We are extremely grateful for everyone who thinks of her, loves her and looks out for her and that we live in a city where our supports are endless. Seeing Madison’s growth over this past year makes us excited for the many possibilities that are ahead of us.

There will be many more important milestones ahead of us, but we think the anniversary of Madison’s diagnosis will always be an important time for us to look back, be thankful for what we have and to keep moving forward.

Pictures from Madison’s therapy at March of Dimes today

Madison arrived home from school today to a Halloween gift from Pam and Medford. She loved ripping the paper out of the gift bag. Pam made Madison a Halloween pillowcase for her new bed. It’s beautiful and so fun! Madison pulled it around with her for most of the afternoon  and is currently sleeping with it. Thanks Pam!

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MRI Update:

This afternoon we had a phone interview with an intake nurse at Sick Kids Hospital. They needed to do an initial screen of questions to help them prepare for booking Madison for an MRI. They reviewed her medical history as well as general health conditions with heart, airway, eating and sleeping patterns etc. They purposed to us an alternate method for getting the scans they need without having to put Madison under via IV. What they do with some children who are generally healthy and are young is try an MRI at night after their bedtime. Essentially we would wake Madison up early one morning, keep her awake all day with no nap and then bring her to Sick Kids at her bedtime. They would put us in a room with a bed, let us do our regular bedtime routine (book, milk etc) and then give her Melatonin. Once she is asleep they attempt the MRI. Due to the fact they want an MRI of her brain, spine and hips they think it will take 1.5 hours to complete the procedure. Once finished we would bring her home to sleep for the rest of the night. They will also keep Madison on the wait list for an MRI through anasthesia in case she moves too much during the first method and they don’t get the images they need. We will give the first method a shot since we don’t have to put her under and the wait list is only 4-6 weeks. The wait list for general anasthesia is 6-8 months. Now that they have a plan and all her information we are waiting for our booking date and plan from her nurse. We are looking forward to having baseline images of her brain, spine and hips so her various doctors can continue with developing her ongoing treatment plans and next steps.

Madison spent her afternoon playing with Nana, trying a new puzzle and reading lots of books. When she got home she practiced her sitting to kneeling, to standing by helping Daddy unload the dishwasher. She then played with her books by using her walker to get each book she wanted from the shelf. We attempted to put on her hip support to open her legs wider but it was a massive battle where Mommy and Daddy lost. At least she was willing to use Her walker during play time.

Madi also helped Mommy take her 6 month baby bump pic

Madison had a great day with Nana & Papa. They started their day with breakfast at Katheryn’s restaurant for some eggs and toast and bacon – Madi’s favourite. Then Madi went to a special place in Rouge Valley that Mama and Uncle Mark use to go to as kids. She fed the ducks and had a special visit from the swans. After her nap and lunch she baked food in her play kitchen and read books, but mostly her favourite book ‘Monkey and Me’. If you are wondering about her black eye, she got into a fight with her books last night and lost. Check out her shinner below.

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Later in the day, Madi worked on her fine motor skills and painted. She helped Mama with an art project for her baby brothers room. It’s the first thing up on the wall in her brothers nursery and we are so proud it was created by Madi with love.

For her birthday, Madison got tickets to go see Sesame Street Live with her Grandma & Grandpa Ambos and her Aunt Emily. They went this morning to the show at the Sony Centre. She sat in a booster seat and loved watching the show.  She even danced in the aisles and got an Elmo balloon at the end. She loved her first taste of live theatre.

Madison was at Variety Village this afternoon doing some physio with Stephanie. A new skill they worked on today was walking on a treadmill.

There are many studies that provide preliminary evidence that children with CP younger than 4 years of age can improve their gross motor function, walking speed, and walking endurance after intensive locomotor treadmill training. We are thrilled that Madison will be incorporating this approach into her therapy and she is quite happy to do it. If you have us on Facebook, check out the posted video of her walking.

Madi is loving her evening snuggles with her baby brother in Mama’s tummy. She waves, blow kisses and rests her head to try and hear baby.

She has also become a little bit obsessed with babies. The only books she wants to read at bedtime are books about babies, she constantly talks about babies, plays with her baby dolls and pretends to be a baby.

She is going to be a great big sister!

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Physio of the day: climbing stairs!

Madi can now consistently climb our stairs all the way to the top in a quick amount of time. We are trying to stand back a bit more so she can have her space and feel more independent with this skill.

Madison spent her afternoon with her Aunts Janine and Suzanne. She worked hard at March of Dimes on sitting and walking with ropes and bars. Madison loves working with Monika.She is making so much progress and we are proud of all her hard work.

She also worked on her wall standing at home during the Jays Game. She loved cheering “YA BLUE JAYS! She clapped  her hands and danced while standing against the wall.

Madison is taking part in a study funded by the Ontario Brain Institute through CP-NET that is collecting information about kids in Ontario who have been diagnosed with CP. Their goal is to better understand how many kids are affected by CP in different parts of Ontario and to better understand the causes of CP.

The study is for children aged 2-7. Madison’s participation will help allow researchers to study the causes of CP, improve diagnoses and develop treatments and interventions. They hope to find ways to prevent CP and improve care in the future.

If you are in the Grandview catchment area and want to participate you contact Angela Kielbowski at Grandview. If you are in the Bloorview catchment area the Principal Investigator leading the study is Dr. Darcy Fehlings at Holland Bloorview Kids Rehabilitation Hospital.

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A Reminder if you would like to purchase a Happy Soul Project ‘Different is beautiful’ calendar we will be placing our order this coming Thursday.

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Physio of the day:

This afternoon Madison had no appointments so she spent the afternoon doing activities at home. One of her activities was standing independently. Madison started by sitting in a straddle position on Mama’s leg. She then says “nose over toes” and presses up to a standing position. She then squeezes her legs against Mama’s legs to try and hold herself up in a free standing position. She is able to hold it right now for about 1 second.

Madison spent her morning playing around the house in her walker. We have made some room in the dinning room and hallway so she has more space to get around in her walker.

Madison then met up with Nate, Nadia and Mark for a super early Thanksgiving dinner before watching the Jays game. Her and Nate cheered loud and practiced throwing balls and playing catch while watching the game. Go Jays Go!