See Ya Later 2020! A Year In Review

Yesterday was the last day of one of the most unpredictable, challenging and one of a kind years we’ve experienced in a very long time. 

With all that 2020 brought, it led us to prioritizing our time, efforts, energy and support, and took us off our blog and frequency with social media. We have tried to update our loyal supporters where we could, but wanted to reflect on this past year with all of you now that we have rung in the new year.

2020 brought not only challenges, but many wonderful experiences and successes too.

Last year at this time our family visited Great Wolf Lodge for New Year’s Eve. It was a wonderful experience as both Madison and Jack LOVE the water. They also both have the beat of music in their souls and miss the late night pj dance parties and sing alongs. One of our biggest hopes looking ahead to 2021 is the opportunity to safely explore new places again as a family.

January and February were full of hockey playing, swimming, in person therapies, birthday parties, skiing, piano classes, Girl Guides, playdates and family time. It brought us up to Mark & Nadia’s cottage for the first time and gave Jack the gift of sleep and good health after his tonsils and adenoids were removed. Madison lost her first tooth and got her new “big kid” bike. Jack had his first “friends” birthday party at Sky Zone with super heroes as his theme. This was also the time we learned of Madison’s binocular vision disorder and started our journey towards proper glasses and vision therapy.

And then March hit….hello Covid and homeschool. Honestly, March through June was a huge blur. Teaching and working from home while homeschooling both Madison and Jack was one of the hardest things we have ever done. We are so blessed to have a huge village of support with our family and friends, and when Covid hit – it was safer for our village to stay home. We are very thankful for everyone who sent messages, facetimed or phoned during those months to keep the kids entertained for hours on end. Madison was lucky to be able to continue some of her therapies online and we committed to daily walks or bikes as a way to keep her moving. Jack was able to continue his music classes online and played lots in our backyard – also a gift we are very thankful for – lots of outdoor space!! The kids became tech wizards during this time – zooming on their own, learning to send messages or texts to chat with friends and learned about time management and independence. We also became masters of Covid celebration parades and virtual dance parties. Madison and Jack have always been besties, but during the first Covid lockdown – their bond grew even tighter and it was amazing to watch. Another gift that Covid brought was Madison’s independence. With nowhere to go, no time limits etc. Madison blossomed. She learned to dress herself, shower herself and her walking took off! She made more gains in her walking through April-July then she has in a very long time. We will always be grateful for that gift of time. Once the good weather arrived and school let out, they spent most of their time in the pool or up north in the lake.

Summer is usually full of extra therapy with the gift of time. It looked very different this year. Lots of meetings with therapists outdoors or on Zoom. Madison got her new braces and tools for alignment and her walking took off further. Jack learned to ride his bike and also became a fish in the water. Although most of our campsites got cancelled, we were able to go camping twice which was nice to have a change of scenery from our house. Our bubble also expanded by spending a lot of time up north at the Gregoire cottage which was a blast and we have so many new traditions and amazing memories. 

The summer then came to an end with many mixed feelings as we anticipated the return to school for the first time in 6 months. Madison unfortunately got sick which led to a hospital visit that opened the door to many other challenges. She was presenting with many of the symptoms of Covid and due to her medical history required an absorbent amount of tests to later uncover a bacterial infection in her kidney. It was treated with simple meds and resolved quickly, but the impact on her mental health was lasting. Her school team and new teacher did an excellent job helping her transition back to school. Their strong communication and caring approach allowed Madison to build her confidence and experience success in areas of her learning that have been a struggle – math, writing and her self management and attention skills. Jack started his first year of school in JK and made a very smooth transition. He loves to learn and make new friends and had a great start. He loves learning his letters and the sounds they make, doing hands on math activities and loves running around playing super hero games at recess. 

Looking back, we now see Madison’s summer hospital visit as the event that was the tipping point for her current mental health challenges. Madison has always been a worrier, always very attentive to so many details in life that most children aren’t attentive to. From the day she left the hospital in August until mid November she was consumed by her worries and fears around being sick. She tried her best to hold it together at school and around most people, but her anxiety took over her day to day activities and life. This has been a part of Madison’s journey that we haven’t been as public about, to give us the space and time to figure out the best way forward for her. After many consultations and referrals, we are now working with a psychiatrist out of the Shoniker Clinic who specializes in mental health challenges in children, specifically anxiety related to illness. Madison has been diagnosed with generalized anxiety disorder, separation anxiety and PTSD. She is accessing weekly CBT sessions partnered with her sessions with her psychiatrist and has had a successful medication trial. The balance between therapy and medication has been the best approach for us that has given us back our happy Madison. Thank you for everyone’s support during this difficult time.

The last few months of 2020 forced us to think outside the box and be creative on how to celebrate what is important to us and live life as consistently and “normal” as we could. Madison and Jack were able to continue taking piano classes online and they are enjoying it and doing very well. Madison had her advancement to Brownies and was able to have a few meetings outdoors before the cold weather came. Jack was able to continue with his skating lessons for a few months and both kids loved swimming each weekend at Variety Village. Most of Madison’s therapies continued online, but she was able to go weekly for physio at VV which was a huge win and massage therapy when we could get her there. Madison also participated in 10 weeks of vision therapy which really improved her eye teaming abilities. Madison’s “social life” has also exploded….daily messaging and video calls with friends is the new thing around our house and it’s so funny, but special to see. Jack usually makes many appearances on these calls too. 

Madison said her favourite memory from the last couple of months was her covid style 7th birthday party in our backyard. Jack said his favourite memory from the last couple months was playing outside at the golf tournament with his cousins. Thank you to all the supporters of the Mike Gregoire Memorial Golf Tournament again this year. Your support continues to provide Madison with amazing opportunities and access to therapies to help with her daily life and independence. Once we are out of lockdown Madison will be returning to horseback riding therapy, swimming, physio, vision therapy and our fingers are crossed that skiing will get the green light. 

This year we celebrated the holidays by attending many drive thru light shows, Zoom calls with friends and family and a virtual Santa visit. Madison and Jack took part in their first ever virtual Christmas concert and performed their songs in sign language as they are not allowed to sing at school. Their elves came and went and our holiday has been filled with Christmas movie marathons, baking, dance parties and time as a family.

Thank you for continuing to support our family and be by our side on this crazy, but incredible journey. I’m sure many moments from our past year reflection were missed, but we’re just happy 2020 is behind us and we have big hopes for 2021!

As we are not on our blog often, please feel free to follow us through daily photos on instagram @ mamaofcrazzies or through Madi Moves Ahead on Facebook.

Happy New Year! 

Katherine and The Ambos Crew

Day 1,331: Three Year SDR Anniversary!

Wow, how time flies! We can’t believe it’s been 3 years since Madison had her SDR surgery with Dr Park in St Louis. We remember the days of lugging her walker around and praying for independent steps. We celebrated every milestone and still do. We use to count each individual step Madison took, and wished for more. Now we count minutes, neighbourhood blocks and kilometres. SDR has given Madison so much more life then we could have even imagined. She is sleeping through the night, she can dress herself independently, she has zero pain and she is confident and happy. Thank you to all of our supporters over the years. This journey has been massive and we wouldn’t have made it this far without all of you. The thousands of therapy hours, kilometres driven and money fundraised and spent have been worth every penny and more. Madison will always have CP and she will always have mountains in front of her,  but the last 3 years have shown us that with the Village we have around us, Madison can conquer anything. Thank you to all of our family and friends, we are forever grateful!

 

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Day 1,330:UPDATE

We can’t believe that January is already coming to an end! We’ve had a very busy month with lots on the go. We always appreciate everyone’s support and all the kind words of encouragement which we receive weekly. We thought it was about time to update everyone on what’s new with Madison and Jack.

Jack

Jack continues to love his time with his caregiver Jackie, as well as the days he spends at preschool. He is an active little guy who is keeping busy these days with swim lessons, music class, hockey and ski lessons. He is currently planning his party for his upcoming 4th birthday – his champagne birthday! He has picked a spiderman theme and will be going with his friends to SkyZone to bounce like crazy. We have been monitoring the issues he has been having with his throat and sleep. After xrays, observation and assessment his doctor has decided it is best to have his tonsils and adenoids removed. They believe this will help with the frequency he is sick but most importantly the issues with his airway when he sleeps. His surgery is booked for February 24th. He has enjoyed reading about the surgery with Madison who got him a special book about it and he is looking forward to a week of resting at home eating lots of popsicles and jello.

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Madison

Madison is enjoying her year in grade 1. She has made some nice friendships and her confidence continues to grow. She keeps busy with Girl Guides, physio, conductive education, swimming, piano and skiing. More recently she has expressed difficulty with the content she is learning at school and the pace she has to work. Grade 1 has been a completely different experience then kindergarten! The good news is her reading has exploded and she regularly participates in class and works hard. She has less support, as her EA is only with her for transitions and outdoor time. She has began learning keyboarding skills and writing in google documents. Due to her changing vision and concerns with learning we followed through with the following assessments for her.

Binocular Vision Assessment
Madison had her assessment and they confirmed that she has binocular vision disorder. They advised us that this is most likely impacting her ability to learn at school and issues with coordination and balance. They have decided to give her a new prescription that will act as both correction lenses and therapeutic lenses to strengthen/relax specific parts of her eyes. Once they can evaluate the impact of the change, they will then decide about vision therapy. She will be wearing bifocals once they arrive. Her therapists are concerned as they feel this may set her back in terms of her walking and balance and are worried they may also cause some safety issues – she will not have depth perception and they will take a very long time to get use to so she will need to have someone watching her closely.
Psycho-educational assessment
Madison participated in a condensed psycho-educational assessment on January 18th and the report was reviewed with us today. The assessment was conducted as part of the Childhood Cerebral Palsy Discovery Network to help develop a registry to better understand the causes of CP and to develop treatments that are effective. This part of the study was to assess Madison’s cognitive functioning.
The tests administered:
Wechsler Intelligence Scale for Children – Fourth Edition sub tests
-Verbal Comprehension – 93%ile – Superior Range
-Perceptual Reasoning – 77%ile – High Average Range
-Working Memory – 18%ile – Low Average Range
-Processing Speed – 21%ile – Low Average Range
Peabody Picture Vocabulary Test – Fourth Edition
-Receptive vocabulary – scored High Average Range with a standard score of 122.
Madison’s skills are significantly stronger in the verbal processing areas with comprehension of language, concepts and vocabulary in the Superior and High Average Range. However, her visual processing ability is much lower. During the processing speed tests she missed items and a complete line. It is possible that she is impacted by her vision.
Madison was challenged by her auditory recall, particularly of non-meaningful information. Providing her with tools to make information meaningful will benefit her learning. Furthermore, she would benefit from using repetition when learning information this form of information.
The psychologist recommended a full assessment at the start of grade 3, when she turns 8 so we will be putting her on the boards list for assessment.
Recommendations that the psychologist made:
 
-extra time on in class activities and assessments.
-preferential seating: by the teacher for independent work time, facing the board straight on for whole class lessons.
-use of technology to take advantage of her strong verbal abilities. Apply for a laptop from the board.
-other options for extra time: bring home for homework, break tasks down into smaller more manageable chunks, prioritize learning, don’t miss recess to finish work.
-provide cognitive breaks
-prioritize homework: don’t assign what she finds easy(reading), use the time to work on areas of need (math)
-processing speed is slower because of how much she has to focus her eyes (vision issues) so avoid copying from the board – provide with information on her desk for any copying
-look for opportunities to accelerate her learning in the areas of comprehension, vocabulary, reading.
-attach verbal information to visuals. She doesn’t retain information that is not meaningful. This is especially important in math when working with numbers.
-find ways to motivate Madison when she faces challenges in her learning. She will take risks when she knows something really well. When she is aware that something doesn’t come as easy to her, she is more likely to disengage and will be hesitant to start a task, look to what others are doing or get frustrated.
We will be meeting with the school to add these strategies to her IEP.
Madison has an upcoming audiology appointment to check her hearing now that she is in grade 1 and the board is sending a speech pathologist to her school to do an updated screening of her speech, particularly with formation and articulation with ‘r’.
Madison continues to do well with her Hypervibe and stretching program at home. We feel that a large part of her recent progress in walking is attributed to the work she is doing daily with vibration therapy.
Some exciting things we are looking forward to in the next few months:
-new cooking class
-Para swim camp with Swimming Canada
-Family Day weekend at Nate & Evelyn’s new “Gregoire Cottage”
-March Break!
Thanks for everyone’s continued support!
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Day 1,329: Hello 2020!

Yesterday I told the kids that this New Years we are not just celebrating another year that has passed, but a decade of moments that made us a family. They didn’t know what I meant so we shared some important highlights with them.

10 Years that lead to our family of 4…

-James and I dating
-Starting my first teaching job
-Renting our first apartment
-My Mom’s liver transplant surgery
-Buying our house and moving to Pickering
-Becoming parents of 2 fur babies
-Getting married
-Becoming parents to Madison & Jack
– And a whole lot of other awesomeness scattered in between that is equally as important, I just couldn’t think of it on the spot

They had a million questions and it was fun to reflect with them.

Our New Years resolutions as a family are: we will continue to try new things together and go on fun adventures, be active, eat healthier, get outside more, be involved in our community and put family first.

Thank you to all our family and friends who continue to be by our side on this crazy journey and for all your support.

We hope everyone has a Happy New Year and all the best in 2020!

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Day 1,328: New Tech.

The next step in Madison’s journey is starting to explore technology for school. Madison’s

printing/writing has hugely improved this school year, but we know a laptop and assistive tech is going to be an important tool for her learning as she gets older. Her school will be giving her a laptop next year for Grade 2 but we wanted her to get a head start on developing some skills. Thanks to some incredible Boxing Day deals, Madison now has her own Chromebook, mouse and headset to start getting familiar with Google Docs and a program to build keyboarding skills.

Day 1,226: Ottawa

This weekend we had the opportunity to travel as a family to Ottawa to support Starlight Canada. They had their first Tea and Tiaras event at the Shaw Centre, downtown Ottawa. Madison sold her bear and spoke to people about how Starlight helps to brighten lives of children like her.

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Day 1,225: Hypervibe

A big thank you to The Mike Gregoire  Memorial Golf Tournament for their ongoing support of Madison. She is making huge progress and your support this year has given her the gift of a Hypervibe whole body vibration machine. This was prescribed by Dr Park to help her continue to progress with her independent walking and to improve her balance and strength. It arrived yesterday and Madison loves it! She will use it two times a day to compliment her other therapy programs. Here is some information from Dr Park explaining how this will help Madison. Thank you for your support!254F2A0B-9D77-4D5F-8A57-9EB4FC6A531F2DB0E467-1AF7-4662-AAF4-592C7B57E941F778BF34-EDD2-4681-9D80-697E723CC0613DDAA03E-537E-46E3-B5BC-D164790F889A

Day 1,223: Golf 2019!

Today was the 8th Annual Mike Gregoire Memorial Golf Tournament! This year Madison was able to introduce all our family and friends to her friend James who will be going to St Louis for the same surgery that Madison had in a few short weeks. The tournament helped him out with the costs involved in post op therapy. We are always amazed by all the sponsors and donors that step forward for this event and to all the volunteers and family members who spend so much time getting everything organized and running a fantastic tournament! Thank you to everyone who continues to support Madison on her incredible journey towards independence  and walking!

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