Day 264: Xray & Lots of Walking

Today was Madison’s first missed day of school. It’s hard to believe that it is November and she has not been sick and needing to stay home (knock on wood). She missed her first day to go to the Oshawa Hospital to have an xray of her hips and pelvis. One of her specialists from Edmonton and another from Grandview wanted to see the anatomy of her hips prior to having botox to make sure her tone issues were from muscle issues and that her bones are developing and aligning as they should. As usual she was a rock star! She went right in with Daddy, lied down on the table and got 2 xray’s. One of her legs extended and one of her legs bent and rotated to the sides. Daddy said she pointed to the machine the whole time and said “machine – up!” And waved hello. No tears! She was in and out in 5 minutes.

Madison trying to do a thumbs up before going in for the xray
Madison trying to do a thumbs up before going in for the xray
Waiting so patiently for her name to be called
Waiting so patiently for her name to be called

On the way home Madison went to a used toy store in search for a push toy walker like she uses sometimes at physio. She lucked out and found a similar one and took it home with her. Latly she has not been interested in using her walker around the house to play so we thought we would give a toy one a try in the meantime to continue to encourage walking transitions from her different toys and places around the house. Success!!! She loves it!!! Daddy strapped on a few weights to help weigh it down and slow it down and off she went!

Move out of the way Carter!
Move out of the way Carter!

After a fun afternoon playing around the house Madison went to Grandview to visit with Kate for some physio where she practiced even more walking! She walked up a slanted ladder, walked to herself in the mirror, walked using a smaller/lighter walker and walked using a weighted vest on the treadmill. She worked her butt off today and we are so proud of how hard she pushed herself.

Quick steps back to the ladder
Quick steps back to the ladder
Lightweight walker
Lightweight walker
Treadmill walking!
Treadmill walking!

Day 263: Back to Normal

Madison had a regular Monday which was much needed. After school she had a nap and lunch and then spent the afternoon next door with Pam and Medford.  She had lots of fun watching Elmo, playing with water, playing with her favourite balls and making some music on the piano. Mommy and Daddy were also grateful for the help as Mommy is back home resting. The other normal that we’ve noticed with Madi’s Mondays is it seems to be her stiffest day of the week. Everyday during the week she does some sort of therapy or activity and then we give her a break on weekends. It’s nice for her to have the break but we notice the consequences of that on Mondays with her tone. Perhaps stretching over the weekends will begin.

Madison and Pam Playing the Piano!


Calendar Update:

The Happy Soul Project 2016 calendar order has been shipped and is on its way in many boxes! We should receive our order this week and can hopefully start delivering to everyone this coming weekend.

Day 262: Family!

We are encredibly grateful that Madison is a part of a family who will drop everything to be with her, play with her and give her everything that she needs. Mommy and Daddy spent the day at the hospital and Madison had a sleep over with Auntie Em, followed by breakfast out with both sets of Grandparents. It sounded like a great morning. After her nap, Madison, Nana & Papa visited Mommy and Daddy at the hospital. The visit brightened up Mommy’s day! Madi got a new cow stuffie to take home with her to snuggle with at bedtime since Mommy had to stay at the hospital. Such a great visit! Thank you everyone for your help and for reaching out!






Day 261: Big Sister Update

Our appologies for missing yesterday’s blog. Madison’s little brother has been pulling some funny business so Mommy and Daddy are staying downtown for a bit at Mount Sinai. Everyone is healthy and good and Madison is enjoying lots of attention from her Auntie Em and all her Grandparents. Posts may be limited in the next couple of days but here are a few cute pics of Madison and her new haircut to tie you over.




Day 260: Physio Excellence!

After a fun afternoon with Grandma and Grandpa Ambos,  Madison went to see Stephanie at VV for some physio.  Today was day #3 of no nap so we didn’t really know what to expect as she was exhausted. Madison also had a really busy week with lots of activities to keep her moving – 3 physio sessions, one conductive ed class and a swimming lesson. Her physio session today ended up being one of her best ones ever! She stood by herself! She stood up from a chair from a seated position by herself! She even took some steps by herself! It was such an exciting hour to see how much she was able to do and how much progress she has made especially just in the last few weeks. Madi worked so hard. You could see how focused she was on her face and how hard she was working with her deep breathing and grunts. For such a little person she sure does know the meaning of hard work and determination. Mommy was thrilled that she left the house and was able to see all the wonderful things that happened at physio today.








Day 259: Parents Night at C.I.C.C.

Tonight was Madison’s first parent night at school. Mommy and Daddy met some other parents, explored the classroom and were able to sit with Madi’s teacher to discuss goals, next steps and get a feel for how she is doing and how the transition has been. Her assessment report had specific goals that focused on areas such as gross and fine motor skills designed by her PT and OT at school, cognitive goals, social goals, language goals, transition and independence goals and using the potty. The items outlined in the report are directed from the lead teacher and then shared to each of Madison’s volunteers each day to help implement and monitor. Her teachers also spoke of next steps for next year and applying to places for specialty kindergarten programs (like Bloorview) and to start thinking about things that need to be lined up by this time next year. Mommy and Daddy were given a report to bring home with lots more artwork and a beautifully laminated placemat for home that has all of her classmates pictures with names and her teachers pictures with names to help facilitate conversation about school at home. Lots of great information was learned and it was a nice field trip out of the house for Mommy.

These pictures and activities were on display in her classroom

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While Mommy and Daddy were at school, Madison was at Nana and Papa’s for dinner and then off to swimming at VV with Ryan. Aunt Suzanne went with Papa to swimming to see how Madison was doing. They reported that she did a great job with Ryan- lots of back floats, kicking and bobs under the water. The pool is really helping with decreasing her tone in her legs so we are so happy for her to be back in lessons. After swimming Papa took Madison home for bath and bed and of course play time with Carter and Stitch. Madison has skipped her nap 2 days in a row so by the time Mommy and Daddy got home she was out cold.

Madison and Ryan had the hot pool to themselves!


Madison stopping on the stairs on her way up to bed to snuggle with Stitch…


And to give her a good pat on the head


Madison requesting a baby book for her bed time read….she is obsessed with books that have babies in them recently

Madison and Papa saying Night Night!

Day 258: March of Dimes & Sticker Fun!

Madison had a great afternoon with her Aunts Janine and Suzanne and her teacher Monika at March of Dimes. She worked very hard on her walking, different balance skills and stretches. She loves her time with Monika and talks about her all night and says she is her friend that she plays with. Thank you Janine and Suzanne for all the great photos.

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When she got home from Conductive Education class she opened up the mail box to find a letter addressed to her from her buddy Mazon. Madison is a part of a sticker club where her and her friends send each other stickers through the mail. She was so excited, she ripped open the envelope and started to stick the stickers all over her arms. If anyone is looking for Christmas ideas…she is currently obsessed with stickers! Thanks Mazon for the super cute stickers!

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Day 257: Grandview!

Madison was back at Grandview tonight with her PT Kate. Madi has been on a break from her service blocks since the end of August. We caught her up on lots. ..mri booked…xray being booked….pt at VV….March of Dimes. …new school….swimming….neurologist and specialist who is planning botox.  Kate did a re-assessment of Madison’s skills and movements to assess new goals for this 2 month block. Some goals moving forward are independant walking, use of walker and falling properly. She also noticed how much Madison has grown in the past 2 months which is contributing to how tight her tone has been. It was so great seeing how easy Madison picked up right where she left off with Kate and she even asked Kate where some of her toys were from 2 months ago…her memory continues to amaze us.  It was great being back with Kate! We can’t wait to see how things go in the next few weeks! Madison’s Social Worker Stephanie also stopped by to touch base with us on all of Madison’s changes but to also help us figure out our new curve ball of bed rest. She is helping us apply to CCAC for respite care at home and is looking into their volunteer network for at home help as well. It was alot of information in 1 hour but sooo great to be back!!




Day 256: Potty Time!

Madison was very proud of herself tonight. She used her potty for the first time at home! She was playing with her dolls and we noticed she had to go. We asked her if she wanted to use her potty, she said yes and then Daddy picked her up and rushed her to the potty. After sitting for a few minutes and reading her potty book she did it!  Poor girls legs are so tight that sitting was really hard for her and the potty dug into her legs. Hopefully with all our stretching and botox that is coming soon something as simple as sitting on a potty will be more comfortable for her. Ya Madi!



Day 255: Feeling the Love

Yesterday Madison had a friend of Mommy’s visit with lots of food and flowers. We are feeling truly blessed to have so many friends at Branksome Hall who are so caring and generous. Due to Mommy’s bed rest it has been harder to get things done around the house. Mommy’s friend Sharon brought bags of yummy food like mac and cheese, lasagna, pasta, salad, quiche, salmon etc. for us to have enough meals for the next 2 weeks! The flowers really helped to brighten up our day too. Thank you to all the teachers at Branksome Hall for helping us out during this crazy time.



Happy 60th Birthday Janine!

Today Madison went to a surprise birthday party for her Aunt Janine! Madi is so grateful for all that her aunt does for her and wanted to make sure her birthday was extra special. She helped Janine open her cards and blow out her candles and everyone had an awesome lunch catered by Casa de Giorgio.

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