Author: katherineambos

Today Madison had a nice visit with her Great Aunts Suzanne and Janine at her Great Grandmas house. Madison is so lucky to have so much love and support!

Madison also enjoyed using her new chair. It’s a tester from Bloorview that was designed for kids with CP. Madison is currently using it to sit at 90 degrees to look at her books or play with puzzles using her stool. We are experimenting with it for her to practice her transitions from sitting to crawling. So far so good.

We also had great news today! Madison is no longer on the wait list for speech at Grandview! She is being seen on Tuesday (my birthday) for her speech and language assessment. They asked us to put together a list of all words she has said to date…here they are…

Momma

Dadda

Daddy

Puppy

Nana

Pappa

Ball

Bird

Duck

Book

Baby

Sign for more

Bye bye

Hi

Up

Baba

Bubble

Shakes head no

Boot

Eye

Moo

Here

Our awsome day ended with cuddles from this cutie!

Selfie!

Madison had another appointment at Grandview this morning. She met with Dr. MacDonald who is her Developmental Pediatrician. We had not seen Dr. MacDonald since she gave us Madison’s diagnosis in October. She was happy to see all of Madi’s progress. She is retiring in a month so we met to get our ducks in a row. Hearing and new development doctor booked, vision screening in the fall, CP specialist from out west booked, speech assessment coming up and paperwork filled out for disability tax credit.

This is Madison trying to escape to play with the door.

We then headed to Nana ‘ s for a nap and some lunch. Madison was spoiled with her favourite sandwich- egg salad and she had jello and cookies. She loves playing with magnets and pictures on the fridge. It’s nice to be on March break and to be able to visit for lunch.

After Nana ‘ s we went to The Village for some exercise and stretching. Madison loves basketballs! She loves chasing them and watching people play on the court.

Next up…swimming!

Swimming continues to be so important for Madison. She did a great job today kicking her legs and going underwater. The pool was quiet so we were able to stay for a while and enjoy all the space. Today we started to work on getting out of the pool. I want her to learn how to use the rails on the ramp to walk sideways to get out of the pool independently. She did a pretty good job for her first try at it. We finished off in the hot pool doing our daily stretches. Her feet were very flexible which I think is from her consistent use of her AFO’S now that she has them.

She passed out in the car on the way home…great day! Now if only I could win the lottery and not have to work – every day would be like a March Break day!

This afternoon we made our way to Grandview to pick up Madison’s new walker! She was so excited to give it a spin as soon as she saw it.

The walker was designed by Motion Specialists and with the help from Madi ‘ s Physio. They designed her walker to fit with her changing needs over the next 3 years. It has hip guides to help keep her pelvis tilted forward and hips pointing forwards. It also has a steering bar attached to the back to save our backs while we are transitioning Madi to using it independently. The bar adjusts to different heights to help anyone of any height. It’s super lightweight and has lots of adjustments depending on what her needs are. She is so proud of herself when she uses it.

Now sporting her new AFO’S and walker- together they will be life changing! We are so grateful to have such amazing support and opportunities for Madison to flourish.

Meeting her walker for the first time

Strolling the halls at Grandview

Proudly showing off her new walker on our street.

And now- here is what we need….time, patience and space…We plan on bringing Madison’s walker everywhere with us to give her the most time and opportunity to grow with it and for us to get use to it…so we will most likely be late…need help unloading and packing up…rearranging furniture to create pathways and lots of encouragement!

Thank you everyone in advance 🙂

Or just look at this picture…

This picture of cookie monster says it all:

Today was one of those days. For whatever reason I often caught myself thinking negatively about life, playing the “what if” game…or even worse- thinking of all the things in life that are going to be hard for Madison and that she may not be able to do. I know these types of thoughts are all a part of the process and to not beat myself up over them…but they still happen and it sucks.

It’s important to me in those sad moments to find the good in what is challenging. That’s how things can turn around.  A big challenge for Madison is being able to move in a way she wants to, but currently can’t – but what she is so good at right now is her fine motor control. So I decided to pick an activity for us to do together to build on her strengths and something to make me feel more positive. So we baked cookies!

I rolled the dough and Madison individually picked out what mini eggs she wanted to use out of James’ massive bag of chocolate.  She then decorated the tops of each cookie by pushing the eggs into the dough. It was awsome to see her do it so well and to eat a plate full of warm cookies!

“Give a girl the right shoes, and she can conquer the world.”– Marilyn Monroe

I consider myself a pretty good shopper and I’m always looking for a good deal. I love the challenge to find the sale but now the anti of the challenge has been raised.

Finding shoes for Madison that fit with her AFO’S is quite the challenge. For other parents new to the process, you want the shoe to be deep (sole can pop out)  and to have a supportive heel, stretchy elastic laces or long enough velcro strap and a bit of a flexible back so the 90 degree AFO’S can be wiggled in. BUT…I also want them to be cute…fashionable…stylish….girly. As of this morning Madison has been using her Nike running shoes that have been working great, but I decided to go on a mission to find her shoes that she can wear with a dress or cute outfit and shoes for outside at daycare.

I decided to look for a sale to guide the process lol. Carters/Osh Kosh had 25% off this weekend so I went.

If you are also on the hunt for shoes that fit your child with AFO’s here’s my tip: bring the AFO’S and not your child!

Here is the first pile of shoes I put her AFO’S in to test them out.

The biggest problem seemed to be the length of velcro. But I was able to find two pairs! A dressy pair and an outdoor pair!

The crazy part of the shop was the women who helped me. I piled about 20 pairs of shoes at the cash and she thought I was buying all of them. Lol. I then took Madison’s AFO’S out of my bag and said I needed a few minutes to try them in all the shoes/sandles. She then asked if my daughter had twisted ankles. I told her about Madison having CP and she apologized and explained that her sister had twisted ankles when they were young and used AFO’S and knew about the challenges of having to find shoes – she said she use to help her sister go shoe shopping all the time – what are the odds that this was the women at the store helping me find shoes for Madison! I was overwealmed at the beginning but it ended up being a great experience.

The winners!

These are for outside and on the playground at daycare once the snow melts!

These are for fun days in dresses! They are a little big but will work.

Madison had a great Saturday! We are starting to look into options for her to be mobile this summer and get herself to the park when we walk Carter. Today we started our search by going to the Grandview Bike Fair! Every 2 years they host a bike fair to showcase adapted bikes and trikes. We got some great ideas on how we can “Mcgiver” some off the shelf trikes.

Madi worked up an appetite so we went to The Works for lunch.  If you have never tried a Works burger you need to! So amazing! Madi and I shared a poutine and a goat cheese burger but her favourite part was trying to drink out of the measuring cup they bring as your glass.

She then finished her day with a nice visit with her cousin Nate. They love looking at each other so close to each others faces. One fell asleep nicely, and the other had several meltdowns on the floor…I’ll let you guess which one was mine lol

Something you may not know about CP is how much it effects a person’s gross motor memory. Gross motor movement is very difficult,  but so is the muscle memory of the pattern of a task. That is why early intervention is so important.

I’ll give you an example.  For an average toddler, their day is spent exploring by climbing, crawling, squating, standing, walking, pushing, pulling and using their bodies in ways they don’t really know how to control or what they are doing- they can just do it.

For kids like Madison, it takes lots and lots and lots and lots of repetition of a similar movement, in a similar sequence over and over to help lay down new pathways in their little brains to achieve new or different movements. This is why early intervention is so important.  Her brain is currently in the years of rapid growth, so now is the time to help lay as many new pathways as possible.

One sequence of movements we have been working on with Madison is being able to independently move herself from a sitting position on the couch to down on the floor. I wanted her to be able to sit on the couch to watch her favourite cartoon (bubble guppies) while eating a snack to then transitioning to the floor to play with her toys. This may seem simple enough but it’s not. She first learned to sit independently on the couch. We then taught her to wiggle her bum so she would slide to be on her back. Once on her back she learned how to roll on her tummy. She then learned to slide her way to the edge until her feet dropped to the ground. She then had to learn to squat to a kneeling position and then eventually to a 4 point position on her hands and knees. This has taken a very long time for her but she is almost doing this independently!  Talk about resilience and perseverance! Here is her process:

For the parents following who have kids with similar challenges, what are the “sequences” you are working on to make daily life easier/ more independent for your little ones?

 

On another note…to all my teaching friends…

HAPPY MARCH BREAK! 18 glorious days off to spend with my little monkey!

It’s been 2 weeks since I’ve started this blog. Thanks for following! I hope you’ve enjoyed seeing what Madison has been up to.

It’s so crazy to see how much she is changing everyday. She continues to blow our minds and our reaction sometimes is pretty funny to the point of people thinking we’re crazy. I’ll explain…we were on our way home from daycare and I was getting my usual tea from Tims. We pulled up to the window and Madison started yelling “Hi!! Ball!! Hi!! Ball” I was laughing so hard cause I knew what that meant…she calls Timbits balls and she somehow figured out we were at the right place to get a Timbit that I didn’t notice I wasn’t paying attention to the drive thru girl trying to hand me my tea. I then looked again and there must of been 6 or 7 staff standing at the window waving hi to Madison. They gave her the Timbit and she said “horray” with her arms up in the air. That was a first hahaha. I then realized it was a coincidence – the happy and you know it song was playing in the car and she was trying to repeat the words in the song. It’s never a dull moment.

This is Madison trying to use her big girl spoon. We now have to give her lots more food then normal as half of it is for her, and half ends up on the floor for Carter. Hopefully she gets a hang of using the spoon soon as Carter is putting on weight and Madison is not haha.

Today marked Madison’s 7th appointment in 3 weeks. We feel so lucky to have so many professionals guiding us and caring for our little peanut …..but I can’t wait for the break! Good on all you parents that have been taking your little ones to appointments for years. I have finally figured out a system with my phone to file all my questions,  new info etc. It will be nice to just play and be normal with March Break coming. ..One more teaching day tomorrow!

Madison got her 18 month shot today and was a champ! She didn’t flinch or make a sound. She is on track with all her measurements, feeding, sleep and speech!

Madison’s first full day with her AFO’S went great. She used them well and there are no red marks to report. She is wearing them for small periods at a time and we are looking for any skin irritation, redness or blistering. So far so good.