Day 294: Tired Girl

Madison’s March of Dimes snowman!

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The botox is starting to show its impact both good and bad. Madison’s tone has started to decrease, her movements seem to be more fluid and flexible and her heels are dropping to the floor. Unfortunately her muscles are very tired and weak and she has not been able to last as long with activities as she normally does. She is also stuffed up and possibly getting sick so we hope this will pass shortly and she will continue to get stronger.

After a fun afternoon with Pam and Medford, Madison went swimming which seemed to help her legs relax more. Ryan and Madison swam in the warm pool for the whole lesson and worked on floats, kicking and using double arm pulls on her back.

Madison attempting to take a selfie with Daddy

Day 293: Showers of Joy!

Mommy had a special visit with Little Miss Addilyn this morning.  Her and her Mommy are big fans of the Happy Soul Project and Madison so they stopped by for a lovely visit and to pick up the new calendar to support Kick It Capes. Thanks for your support and love Addilyn!

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This afternoon Madison had a great class with Monika at MOD. They practiced standing while trying on holiday hats, crawled through a tunnel and practiced walking holding onto the bars with one hand and throwing balls with another. She was tired during her class as well as at school today and yesterday. She was also tired during physio yesterday. We suspect that from the botox Madison is now having to use some of her muscles differently that she is not used to and due to the adjustment she is weaker and getting tired faster. We hope with the continued daily therapy she will gain strength and energy.

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Mommy spent her evening with a group of lovely ladies from work who held a beautiful baby shower for both Mommy and Lisa. It was so nice for Mommy to visit with co-workers and to receive such beautiful books and gifts for baby #2. Thank you again to Lauren for hosting!

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Day 292: Celebrating Babies!

Madison had an earlier session with Kate at Grandview today. She went straight after school so she was a bit tired and wasn’t able to finish the whole hour – but she worked hard and did well in the time she was there. She practiced lots of standing and walking!

After physio Madison visited with her new friend Owen! Owen is 1 week old and is perfect! His Mommy and Daddy are doing great and Madison loved meeting him. She was very curious and was very gentle. We were all thrilled to meet the little man and to hear how well he is doing.

After celebrating one little friend it was time to go to dinner to celebrate another – Nate’s 1st Birthday! Madison went out for dinner to celebrate her cousins big day. They both enjoyed lots of ice cream and after dinner they had a play together with all of Nate’s new toys. Happy Birthday Nathan!

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Madison’s bath time was a special moment tonight. It was the first bath she had with no assistance such as a sling or chair. She did a great job and loved splashing about, moving and doing whatever she wanted. She was a little wobbly which made Mommy nervous but she loved every moment.

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Day 291: Christmas Tree!

At school today Madison liked making Hanukkah candles out of wax.  They also read a story about a boy and his draddle.

She spent her afternoon with Grandma and Grandpa Ambos making Christmas crafts.

When Madison got home she helped decorate her Christmas tree before dinner. Mommy and Daddy asked her to find certain colours or themed ones and her job was to dig through the box to find them.  She also liked hanging ones up high with the help of Daddy. She did a great job.

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After dinner Madison had some play time and physio with Emily in the basement. They played with lots of toys and practiced different physio activities like stepping up and down on a stool in her play kitchen. She loves her time in the basement and Mommy and Daddy appreciate having the time to get things done and for Mommy to put her feet up.

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Day 290:Birthday Boy!

Madison’s day started with a special visit from Abi who drove all the way from Oakville to help Mommy and Daddy. Thanks for driving her Sheila! They played in the basement with all of Madison’s favourite toys and with Carter and Stitch. After play time it was time to get ready to celebrate her cousins birthday!

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Madison was very excited to celebrate Nate’s 1st Birthday! It’s hard to believe he is turning one on Tuesday and today family and friends gathered to celebrate the Littles man’s big day!

Here is Nathan one year ago

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One of Madison and Nate’s first pictures together

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Nate’s birthday was celebrated at a very special place for all of us – Variety Village! All the kids played in the field house on the air mattress, obstacle course, parachute and Madison and Daddy’s favourite – the turtles!! Mommy and Daddy were thrilled with how accessible all the activities were for Madison. Madison borrowed the walker she uses at Variety Village from the physio room and tried to use it for a little bit. She was more interested in getting around on the turtles.  After the gym everyone went to the party room for some pizza and cake. Madison loved visiting with everyone. Happy 1st Birthday Nate! We love you!

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Day 289:Holiday Fun!

Madison had a great day kicking off the first weekend of the holiday season! Her day started with a special visit with Ruby! She has missed seeing Ruby and playing with her so it was a great visit. They played with Ruby’s kitty’s, watched Elmo, exchanged Christmas presents and had some yummy snowman cookies. It was a great visit!

When Madison got home she had a nice visit with Grandpa Ambos who was over helping Daddy install a new dishwasher. Madison  did a good job supervising.

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Madison opted for some quiet time instead of a nap and watched Bubble Guppies on her iPad.  The deal we made with her was she could watch a few episodes if she did it in a standing position. We were thrilled with how strong she was able to stand with feet flat on the floor!

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Madison then went to pick out her Christmas tree with Nana, Papa and Daddy. They went to the Scouts down the road to support the local Troup. She made an excellent choice!

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Madison then spent the rest of her evening watching Papa and Daddy set up the tree, reading a new Christmas Elmo book with Nana and having a yummy dinner with candy cane ice cream for dessert. It was a great day to kickoff the countdown to Christmas!

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Day 287: Miss Personality

Mommy & Daddy got a funny email from one of Madison’s teachers today. We had emailed about her botox and what to look for at school for the next few days and here was the response.

“Sending you a quick email to let you know that Madison is such a trooper and did very well this morning, though she did request to her volunteer once, “sit down” (which is really rare). She truly has a knack for remembering names and was keeping everyone in line today as she would call for them when they were not in the classroom. She was quite upset that Alma was not at school today and repeated “Alma not at school. Alma is sick.”

Our little peanut is a creature of habit and routine and needs to have things done a certain way and when and how she wants it.

In her school journal today it said:

“Madison has been talking so loud today! She pushed her friend in the spinning chair for a long time while standing. Madison had fun jumping on the trampoline while watching her friends play hockey. It was a great day!!”

Mommy spent the afternoon shopping with Nana for some Christmas maternity clothes and Madison spent her afternoon with Pam and Medford. She loved chasing their cat Bogie up the stairs and under the bed. She told us many times at dinner that she pet Bogie on the bed. After dinner Madison went for a swim with Ryan. They stayed in the hot pool for the whole lesson to keep her muscles warm, practiced some squats on the ramp and did some floats and pushes off the side.

Day 286: Botox & MRI Results

This morning Madison played hookie from school and went to her first botox clinic at Grandview. When she arrived they were with another child so she played in the waiting room and walked around with Daddy.

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She knew something was different about today from the minute we got there…smart little cookie

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After a few minutes of playing her physiotherapist Kate and another therapist Marge picked her up and off we went. Dr. Mason observed Madison play and move, assessed her flexibility/range of motion, reviewed her hip xray’s and mri reports and then discussed his opinion for botox.  The goal with the botox injections is to reduce spacticity and relax the muscle groups targeted. He felt the best treatment at this point was to focus on Madi’s hamstrings and calf muscles to address the high tone and see what the botox can do for movement involving those muscle groups.Madison played with Kate while Mommy and Daddy discussed the procedure and signed some forms.

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We then moved Madison to a different room to lie her down on a table face down. The two therapists held her still while Mommy and Daddy stayed by her head to talk to her.  The doctor used an ultrasound machine to guide the needles into the correct muscle locations. All of the injections took a total of 4 minutes. Madison was a trooper. She cried and screamed “all done” several times and after the 4 minutes was up she rebounded, calmed down and was herself again by the time we left the building. The botox will take 2-3 weeks before we see any sort of results. Until then she is to keep doing all her therapies and as much activity and stretching as possible as her legs will be a bit weak over the next few weeks. It was also confirmed today that Madison will need a new pair of AFO’S. With the combination of her growth and change in tone from botox they would like her AFO’S to fit her better then they are now.  We booked an appointment to have a re-assessment and possible re-casting a few days before Christmas.

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On our way home we stopped at the grocery store to pick up some ice cream and some big girl pull ups. Madison was already back to herself again.

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After a well deserved nap and lunch Madison was off to March of Dimes to hang out with Monika for Conductive Education. She did a great job! She worked on all kinds of activities in a seated position, standing against the wall bars and building a tower, walking with ropes, walking in the parallel bars and squating to pick up different vegetables,  independent standing on each letter in her name, and some fine motor skills of squeezing clothes pins and peeling  cabbage.  We were so proud of her for working so hard after such a long morning.

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After a long day, we received a late night phone call from Madison’s Neurologist Dr. Cooper. She was calling with the results of Madison’s MRI. She will be sending all the scans and report tomorrow but here is the coles notes of what she reported to us:

  • The MRI confirmed evidence of damage to the brain
  • The damage is deep in the centre part of the brain in the white matter along one of her ventricles.
  • There were signs of increased flare and brighter signals showing around the ventricles in the centre of the brain which is most vonerable during premature birth
  • The specific section of the damage is located in the motor planning area of her lower limbs which causes delayed muscles in the legs
  • No grey matter is damaged
  • The location of the damage on the ventricles indicates blood supply damage in the motor area
  • The damage is not impacting other cognitive abilities such as intellegence/thinking, speech,  memory etc.
  • The bio – chemical makeup of her brain is excellent
  • The anatomy and function of her spine is excellent
  • The above findings confirm her diagnosis of CP- spastic  diaplegic
  • All reports will be sent to her pediatrician as well as her team at Grandview  and the CP- Net research project
  • We do not need to see Dr. Cooper again unless anything comes up
  • Treatment will continue as we have been doing with the possibility of discussions of appropriate surgeries as Madison approaches the age of 4 also depending on the success of the botox treatments over the next year.

Time for bed

Day 285: Madi meets Molly

Madison had the afternoon off from Grandview since she is seeing her physio Kate tomorrow for botox. She spent her afternoon with Pam and Medford. One of the things they did was watch Santa Clause on the iPad which she is still talking about now at bedtime. After Mommy’s appointment she stopped into Chapters to pick up a book and saw this display behind the counter!

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While dinner was cooking Madison met her new Elf on the Shelf friend who came to visit for the first time today. Madison read the book and decided to name her elf Molly. She then opened her chocolate advent calendar from Nana and the Little People calendar that Molly brought from Santa.  We are happy to have Molly with us as Madison ate her whole dinner!!!! Yesss!!!

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Madison finished her day with a long hot bath to loosen up her muscles and had Mommy do a super long stretching session to help for tomorrow. Madison will be getting botox for the first time tomorrow morning. Cross your fingers!