Author: katherineambos

Madison had a fun morning with Nana, Papa and Jack. She helped Papa do some weeding, played peekaboo with Jack, visited with the neighbourhood cat and had lots of snuggles.

Madison spent her afternoon with Nate and Uncle Mark. They had a dance party. Madison kept trying to stand up on her own to dance on her feet. She quickly problem solved and went to the nearby ottoman, pulled herself up onto her feet, and then started to dance! Her and Nate also tried some tricky puzzles together. She needed some help at first and then figured out how to make them work. Nate and Madi did a good job teaming up to wrestle Uncle Mark.

Madison had some playtime in the backyard with Pam and Medford before bed. She used her walker on the grass to try and get to her slide. The grass was wet so she couldn’t move her walker very well. She quickly problem solved and figured out if she leaned all the way forwards with her body, the walker would start to move and then she could step quickly to keep the momentum going. 

Madison had a busy day, it was lots of fun and therapy free! 

Madi visited her first garage sale this morning when out for an early Saturday walk. She picked out 2 pink bracelets (shocking) and haggled the price which was hilarious – the only problem is she went up in price. The lady said “1 dollar please” and Madison said “No! 5!” The lady then gave her both bracelets for 50 cents. 

Madison then went shopping for her friend Theo’s birthday present and on the way out stopped by the pet store to say hello to her fish friends.

One of the highlights of her day was visiting her little buddy Owen. She played with his pup Bauer, entertained Owen and Jack and pushed Owen in his swing. She is is such a good little babysitter. 

Madison finished her afternoon by helping Mommy and Daddy clean up the backyard and put out some of her summer toys. 

Madison, Mommy, Daddy and Jack are happy they have found a new community of friends walking the same path. Madison has a new group of little CP warrior friends that all live relatively close and are all under the age of 3! She will be getting together with some of them this coming week and is excited for more play dates in the future with her little buddies who work just as hard as her and do the same types of therapies and have some of the same equipment. One of the moms shared this with Mommy today. Mommy is so grateful to have her new amazing mom friends who are so supportive and truly “get it”.

💕I See You💕

I see you running your child to therapy when your friends are running their kids to Little League or ballet

I see you slipping out of the conversation when your friends are all chiming in about milestones and test grades.

I see you constantly juggling appointments and meetings.

I see you sitting at your computer for hours researching what your child needs.

I see you cringe when people whine about what feels like petty things.

I see you spread thin but still going the extra mile for your family.

I see you digging for depths of strength you never dreamed you had.

I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.

I see you rising early in the morning to do it all again after another chaotic night.

I see you when you’re hanging on to the end of your rope for dear life.

I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor.

What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you.

Whichever day today is, you’re worthy, you’re good and I see you.

Madison tried her best and worked her butt off at physio today. She started with squating exercises to strengthen her quad muscles and get a good stretch to prepare for standing. She practiced standing up from the floor not holding onto anything. Stephanie also did some excellent treadmill training and Madison was the strongest she has ever been on it. They did lots of walking and Madison took 6 independent steps and stood independently for 20 seconds!

Before dinner Madison headed outside in her walker to check on her garden. One of her new responsibilities around the house is to water her seeds each night to check on her flowers and her bee visitors. She takes is very seriously – she never forgets about her job. 

At the end of a long week, family snuggle time is the best!

Madison worked hard with Monika this afternoon at March of Dimes. She tried standing up from a bench and side stepping without holding onto anything. She did great! They also did lots of stretching of her hamstrings now that the Botox is working its way through her muscles. Madi showed Monika how she has been practicing standing up from the floor and they worked on walking with her canes. When watching Madison at conductive education we often think back to when she first started about 15 months ago. At that time she was learning to roll over, sit independently and crawl. She has changed so much since then and has accomplished so much with her dedication and hard work.

When Madi got home she wanted her sweater to be taken off. Mommy had to feed Jack who was having a meltdown so there was no one to help Madison. She then said to Mommy ” it’s ok Mommy- Madi will try” Madison then proceeded to unzip her sweater all by herself and after about 10 minutes of pulling and pulling on her sleeves she got her sweater off all by herself. Madison was so happy and proud of herself and kept screaming “I did it Mommy! I did it!” She then did her little dance that she does while singing “I did it, I did it, I did it!” Such a small, everyday thing to try, but such a big moment to celebrate.

Here is Jack, post meltdown… He is quite happy with himself hahaha

Today was a super jam packed day for the Ambos family. Madison had some exceptional experiences today that made for a positive day, and Mommy and Daddy made some progress with their “to do” list.

Madison’s teacher reported that she took some independent steps before music circle this morning. One of her teachers was so happy to cheered and had some tears of joy! 

Madison had a good ride on Joe this afternoon. Madison told Mommy and Daddy that she let go of Joe to touch her helmet and then touch her toes. They are working on balance, coordination and core strength. Madison also played a game with Joe who was wearing a necklace made out of rings. Madison had to try and reach forward to touch the different coloured rings while Joe walked around outside. It was a beautiful day! 

 Madison spent some time with Aunt Nadia, Uncle Mark and Nate while Mommy and Daddy had a meeting with their Social Worker. Madi and Nate had lots of giggles and played in Nates fort. Mommy and Daddy spoke with their Social Worker about funding for renovations, ways of talking to Madison about her challenges, upcoming scheduling with her new developmental pediatrician, checking that Madison is on “the list” for the CP specialist coming from out west, investigating community programming for the summer etc. etc. etc. 

Mommy also heard back from one of the school options for Madison for September 2017. Mommy and Daddy will be going to meet the principal in a few weeks to have a tour and see what life would be like for Madison in a regular full day kindergarten class so that decisions can be made around what the best fit will be for her. A few other schools will be looked at in the next few weeks including Grandviews school before everyone goes on vacation for the summer. 

While dinner was cooking, Madison helped Daddy water all the flowers. She loves her job of filling up the watering can from the rain barrel. She was especially excited to see a big fat bee flying in the garden that she planted to save the bees! 

Madison was excited to sing Happy Birthday to Nana today! She can’t wait to celebrate this weekend!

Madison did a great job at the pool with Ryan. She is getting so confident with walking up and down the ramp by holding onto the rails. They spent most of their time in the warm pool to help her tired leg muscles. Her legs are still quite weak from the Botox last week. At the end of her lesson Madison helped Mommy coach Ruby in the deep end. She loved watching all the “big girls” swim.

Madison spent her day with Nana and Papa while Daddy and Jack took some time to kick some germs and Mommy learning at a workshop.

Madison went out for a yummy breakfast and then did crafts and learning with Nana back at the house. She decided to not use her walker at breakfast because her legs were tired and sore.

Madison made a puppy with Nana. She worked on her cutting and gluing skills and drawing lines. She loves using her learning scissors. She also practiced writing her name. She loved making numbers with glue and sprinkling sparkles all over them. 

Madison was also excited to hear about “Mommy at school.” Mommy went to a ABM workshop today to learn about another alternative therapy for Madison. Through the powers of social network Mommy met an amazing group of moms with kiddos much like Madison who encouraged Mommy to check it out. Some have already tried ABM and some are starting to explore. Mommy learned lots and was excited to try a lesson with Madison as soon as she got home! For those who don’t know, ABM stands for Anat Baniel Mehod. Here is a small blurb… And for all Mommy’s teacher friends out there…neuroplacticity!!

Madison is signed up in June to try this method of therapy with a professional, and Mommy will work on some of the methods behind the theory of the work at home to supplement the other therapies Madison is currently accessing. Here is a video of Mommy trying one movement lesson. Mommy needs more practice, knowledge and time but it’s a start.

Mommy and Madi also were able to do some good stretching before bedtime. It is already extremely noticable the difference in her leg tone since the Botox. Madison’s hamstrings are much more flexible. So much that Madison was attempting to stand up from the floor tonight! It was so exciting to see!

Madison had a great morning at Pam and Medfords. She loves playing with the special gold horses and her pink ball. She was very excited for her tea set gift Pam and Medford gave her. She talked all day about her pink tea and her purple plates. Jack is still under the weather, but he loved getting cozy in his new quilt. Thank you Pam it’s beautiful!

This afternoon after her nap, Madison played with Carter and Stitch in the family room. While Mommy was feeding Jack she noticed that Madison was talking to herself in a whisper. Madison was whispering the steps she needed to take to sit in her bouncy chair by herself. She was standing at the ataman, took a step backwards, bent her knees to a squat position, froze in the squat position while she felt with her hands for the chair behind her, and then sat down. She whispered to herself the different steps she needed to do to sit. It was so exciting and rewarding to see the transfer of what she has been working on in therapy, to a real life situation at home. Next time she does it Mommy will make sure she has her phone nearby to catch a picture or video to share.

Madison had a great day! After only 2 days of Botox everyone is already seeing the positive impact. The consistent thing people have commented on is how quickly fatigue sets in for her, but the quality of her leg function and flexibility is already noticably better. Even comparing putting her AFO’s on today compared to Monday is a big difference. Everyone is very excited for the next chunk of time when the weather is nice and she can get outside to be active, continue her therapies and see excellent results once the Botox fully settles in. Madison did excellent work with Stephanie. She did long sit floor activities to stretch out her legs and get out of the “w sit” position. She also did fantastic walking… 4 controlled steps!!! Stephanie has set the goal of 5 steps over the next month- totally achievable!! Go Madi!!

Jack is also going to be spending some time with Stephanie to help Mommy and Daddy learn some good head and neck stretches to help him along. Madison was very excited to show Jack “what to do” when with Stephanie. She helped set up toys for Jack and the floor mat. 

Madison did some great stretching at home tonight. She stood in her tower for a long time with both her AFOs on and her Gaitor braces. Her legs were super stretched out once they came off. Madi even sat in long sit in her floor chair while eating her ice cream sandwich. She told Mommy that stretching helps the medicine in her legs work. She is so smart!