As you all know…Madison practices LOTS of walking. It’s great for Madison – but not always great for Mommy and Daddy’s backs. One way Madi practices her walking is on tables. That way Mommy and Daddy can hold as low on her legs as her ankles and not break their backs. It’s also a nice way to mix things up for Madison to keep things exciting.
Nap time with Jack
Some days can be extremly busy, tiring, chaotic and challenging…but then there is the light at the end of the tunnel…a moment so bright and exciting that it stays with you forever and makes you forget about the hard days. Madison had one of those moments with Stephanie today – she took several steps independantly on her own. ..and on one of her attempts to make her way to the cabinet full of toys…she took 7 steps!!! Mommy cried instantly and cheered, clapped her hands and jumped up and down. Madison was so proud of herself after she realized what she had done. Of course Mommy didn’t have her video on her phone ready so it will be a special moment shared between Mommy, Stephanie and Madi – but we promise we will capture a moment like that again in the near future and share it with everyone so you can feel the same joy that was experienced today.
Here are some other moments from their hard work today:
This morning we had the oppertunity to have an interview with two analysts from Health Quality Ontario. They have been reaching out to communities to speak with families about their experiences raising a child with cerebral palsy in Ontario. They are working on a project to get families perspectives on care, therapies and surgeries available in the province. Specifically they are interested in SDR Surgery.
Of all the surgical procedures currently performed on patients with cerebral palsy (CP), selective dorsal rhizotomy (SDR) has undergone more thorough scientific scrutiny than any other (including orthopedic surgery). SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP.
The surgery is currently not available in Ontario. If families choose this type of surgery for their child with CP their only options right now are to seek referrals to British Columbia, Montreal or to the States- St. Louis with a hefty price tag of $100,000.00. They were interested in hearing about the daily decisions involved with having a child with CP such as therapies, financial struggles, help needed from family and friends and short term/ long term goals for the family. It was difficult speaking about the hard days but it was important for them to hear. They wanted to know about the costs involved with private therapies, experiences with doctors and the transparency of information of what is available within health care and support in making decisions around future surgeries. They hope to have their project completed by June. They will write a report based on many families perspectives and then present their report to the ministry of health who will make the decision about the future of therapy and SDR surgery for children with cerebral palsy in the province of Ontario. It was encouraging to learn that such projects exist to inform financial decisions/budgets within health care, and ultimately it was encouraging that no matter what the outcome is- the Province is hearing that these options of surgery are important to families to explore within their own province. Madison’s diagnosis of spastic diaplegic cerebral palsy is considered to be a favorable candidate for this type of surgery. She is still young, but we know we will have to start having more conversations around alternative therapies and possible surgeries as she gets older and we see what her needs are.
If you are a parent of a child with cerebral palsy and would like to speak with Health Quality Ontario to share your experiences, send us a message and we will pass on the contact information. They are also very interested in speaking with parents who have a child who has already undergone SDR surgery.
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And now….Madison’s day…
Madison had a great morning at school. She played with her two buddies Alma and Emma in the gym pushing each other around on a scooter and had lots of giggles. She also had a great afternoon with Pam and Medford . She liked using the phone to call Mama, loved Pam’s blueberries and showing them her tricks! After dinner she had her swim lesson with Ryan. She is tall enough now to touch the bottom of the pool in the hot pool at Variety Village! Ryan tried independent standing with her where he stood her up and let go and they did some walking through the water. He also had her on her tummy on the ramp to practice blowing bubbles with her new goggles. Great lesson!
Madison did not want to get up this morning. It has now become a daily challenge now that her level of activity and movement has increased. She has spurts of her day where she is very tired and has a hard time being independent, active and able to engage in what is happenning. We often think back to a conversation with one of her doctors about how many more calories a child with CP uses daily versus a typical child. We have an appointment with one of Madison’s doctors in a few weeks to address her nutrition and look at how many calories she should be having each day and what types of foods will give her the strength and energy she needs as she can be very picky with what she eats. We will also be discussing her sleep habits and how to give her what she needs to get really good sleep to help her with the physical demands she has every day. She was very tired tonight and was not able to finish her session with Emily. They practiced some standing and walking and played with her favourite toys and then she was ready for bed.
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Madison had a fun afternoon with Grandpa, Grandma and Stanley. She really liked going on the swings at the park and she played with Stanley with her letters and numbers.
Madison spent her morning with Nana and Papa. They went to their favourite Pickering breakfast spot and then ventured to the mall.
At the mall Madison had quite the workout. She used her walker all the way from the parking lot, into the mall, up and down the isles in PJs pets, around the mall and then all the way back to Dairy Queen and out to the car. She did a fantastic job finding her way and moving her walker where it needed to go and even attempted going down a double ramp on her way back to the car.
Madison loved looking at all the fish and snakes and kitty’s in the store. She even looked for and got a special toy for both Carter and Stitch. Her trip to the mall finished with her favourite ice cream from Dairy Queen – Vanilla soft serve with pink sprinkles! She got quite the brain freeze. Thanks Nana and Papa for the great morning and for the walking workout!
Madison’s day started with a nice visit with Ruby, Sara and their family. Madison introduced her brother to them and had a blast playing with Ruby in her room.
Madison spent her afternoon doing what she called “tricks”. Her first trick was sledding for the first time. She did a great job sitting up straight in the sled and held on tight as she went down the hill. Mommy and Daddy picked a bad hill to start on. Madison went so fast that Daddy had to throw the phone out of his hands while trying to video and catch Madison in her sled before she hit Carter and others in her path. She was a bit scared after her first hill, but she went back up with Mommy and tried a few other spots. Mommy and Daddy were happy to see that she kept trying even though she was nervous. It’s great to see Madison push through her comfort level and try new things that are physically challenging for her.
Jack was happy staying warm and watching his sister from the stroller
Her last “trick” of the day was tumbling off the baby bouncer onto Carters dog bed. It was not the safest game in the world, but Mommy and Daddy were thrilled seeing Madison try something new that physically she has never done and climb and tumble like any other toddler would. Madison is becoming much more adventurous and not as timid with her movements and play.
On her way home from school, Madison brought Daddy lunch and visited Papa at work. She answered the phone and counted inventory of balls with Daddy. She helped Papa on the computer and put her brother Jack in a giant baseball glove. It was a nice visit!
Madison also spent part of her afternoon with Pam and Medford. After being away for a month they really noticed how quickly she is now getting around and wanting to explore and be independent. She LOVED Pam’s blueberries, used a flashlight to find their kitty Boggie and learnt about different animals they saw in Florida. She told me the names of seahorses, manatees, dolphins and alligators. She did not want to leave but her brother was very hungry.
Happy 1 Month Jack!
Madison was sad to miss her swimming with Ryan on Tuesday so she wanted to practice her kicking and bobs in the bath tonight. She said “practice for Ryan!!” She also just got her first pair of goggles, so she practiced using them in the bath to look at her toys under the water.
Madison had a great session with Stephanie today. She walked with the wagon around the track again, worked on standing while drawing and shooting basketballs and did fantastic manouvering around things with her walker. She also took 3 steps all by herself and made Mommy cry a little.She is so close to being able to take several steps on her own! She is much better with her patterning of walking and the transitioning of balance. She needs to continue developing her balance when leaning forwards to walk. She leans so far forward at times that her feet cant keep up. She needs to continue to go slow and pause in between steps. Her development is so exciting to watch!
When Madison got home she was excited to have a visit with Pam & Medford. She loved looking through all the shells they brought back for her and a shell book to learn about all the different kinds. She is also currently snuggling in bed with her new chameleon she has named Chamie. She is very happy to have them home.
Madison has become interested in money. She found a quarter today and held onto it all afternoon. She went to get her bangs trimmed and wanted to pay all by herself.
When she got home she decided she wanted to save her quarter for another day. She put it in her piggy bank and told Mommy she is saving it to buy food. She said that she wants to buy a banana with her money.
Welcome home Pam & Medford!
Madi Moves 