Author: katherineambos

Not all, but many kids with CP take many medications throughout their life to manage things like muscle pain, stiffness or spasms, seizures or constipation. Madison is not at the point of needing all these things just yet but we have decided to be preventative of muscle issues and add a little essential oils regime to her life.

Madison has already used essential oils such as breath when she has colds in her humidifier, lavender and serenity when she is having sleep issues, on guard and deep blue on her muscles Etc. Etc. But we are trying some new mixtures specifically to target muscle stiffness/pain and constipation. Today I met with a friend if mine Theresa who helped me with research of the best ways to work with oils for Madison. We will be trying things like cedarwood, Frankensence, white fur, balance and a few others. We are excited to add this to Madison’s daily care. We will let you know how it goes. If you are a parent looking for specific mixtures of this kind for your kids, let me know and I’ll send you a list or put you into contact with Theresa.

While I was coaching this morning and visiting Theresa, Madison spent the morning with Nana and Grampa.

Guest post from Grampa Gregoire:

“Madison was a big help today with Nana and Grampa. Madison came over early today to help Nana with her TPN. Madison held the line while Grampa changed it. She held the pump for Nana as well. Once we were all done Madison, Nana and Grampa went out for breakfast.”

Madison helping with Nana ‘ s TPN cord

Madison helping with Nana ‘ s pack

Cheese!

Selfie with Grampa’s phone!

The Beacher for breakfast

Madison was up bright and early ready to play with Stitch.  She’s now figured out that if she shakes something Stitch will attack it. Today’s choice of toy was a balloon. It ended up being great exercise for both…Stitch running and jumping and Madi in her 4 point position.

Madi then played with her new bubble machine that the easter bunny brought her. Madison’s therapist uses bubbles during her sessions to motivate her to do different things or to distract her. We have been using them at home to get her to reach her hands up to pop them while in a crawling position. This will improve her balance, strengthen her core and eventually give her the strength to sit up on her knees unassisted…and bubbles are fun to pop- we love bubbles!!

She enjoyed her evening at Nana & Grampa’s and hanging out with Uncle Mark and Nate. She went to check out a new sparkly kitchen, then ate pizza and watched birds while Mommy and Daddy helped stuff envelopes.

Nice photo bomb Grampa!

This morning James took Madison to see Doctor Eric who takes care of Madison and her AFO’S. Madison had some problems a few weeks ago with them, he did a repair and today he was checking on the changes to see how they are going. Since the changes, they haven’t popped off her feet so it’s been going well. Today he added a tongue to her inner boots so that her skin won’t get pinched.

While they waited for Doctor Eric to make the changes in his workshop in the back, Madison played and worked on her sitting. James said she did a great job sitting independently with the help of the karaoke game. All is good now with her AFO’S and we will visit back in July.

Today is the 49th straight day writing my blog. It has been so wonderful to use this as a tool to reflect, looking for the positive and to share our amazing girl with all of you.

Each day I read to Madison the post from the previous day, show her all the pictures and tell her how lucky she is to have so many people who are cheering for her and love her so much!

This will also be special to keep for her to have when she is older as a digital scrapbook of her life.

I am also thankful for all the new people I have met and connected with through sharing our life with all of you. It’s nice to chat with parents who “get it” and who we can teach and learn from in so many ways.

The reason I have chosen today to look back is I stumbled upon a feature in my settings of my blog. I am able to see how many visitors I have had to the blog and how many views I have had. It is extremely overwhelming and so amazing to know how much love is being shared for Madison.

Madison has had 919 visitors and 4,140 views since starting 49 days ago.

Thank you for supporting Madison, joining us on this journey and continuing to cheer for her in the weeks, months, years to come.

Madison’s morning started off with pajama day at daycare…

And ended with a successful swimming lesson with Ryan!

Madison did an awesome job at swimming! We met Ryan in the bigger pool today, I passed her over and left the deck. She was a bit sad at the beginning,  but the tears only lasted about 5 minutes and then she swam, blew bubbles and was entertained with ducks and balls and flutter boards. I hid in the pool lobby so she wouldn’t see me and chatted about the weather and such with other parents who were hiding from their kids eye sight too. She was all smiles when I picked her up. So proud of her! Victory!

At the end of a difficult day, watching your little one sleep brings peace and happiness.

“Sweet Dreams”

Watching you sleep,
Watching you breath,
A peaceful end to
Another playful day.
More than a glowing sunset,
More than the shining stars,
You, my little one,
Take my breath away.
-Crystal Perry

This morning Madison got to hang out with our neighbour’s Pam and Medford while I caught up on house work and made many phone calls to coordinate schedules of many upcoming appointments, physio etc. Let’s just say that May is going to be a crazy month for Madison…kind of like toddler boot camp.

We Are so lucky to have such great neighbour’s who love Madison and help us in so many ways.

This afternoon Jennifer from Motion Specialists dropped by to check on Madison’s walker and to attach her new accessory – padding to the hip guides. Madison’s waist is so tiny that there was space on either side of her hips so when she would walk in the walker she leaned to the side. Now with the extra padding it will help keep her up straight and stable.

Madison also worked on her stair climbing this afternoon. Madison has now learnt that if you tickle behind her knee or under her foot, that is the part of her body she has to move to be able to climb the stairs in the right sequence. I try and keep each step in sequence so she learns the pattern, but it’s even hard for me to remember sometimes.

We hope that you all had a wonderful Easter long weekend! Thanks for reading!

Madison had a great day visiting with friends and family. She is very lucky to have so many people who love her so much. She wore her new dress shoes for her AFO’s that worked ok. They were kind of big but they fit the braces and most importantly looked cute. Madison has also been “unsure” about new textures and is timid to touch something she is not sure of. I was proud of her bravery today when she pet a goat and liked it. She had a day full of family, gifts, way too much sugar and lots of hugs.

Happy Easter!

Here is a photo recap of her day.

Madison spent her morning at a Walmart helping her friend Ruby who was fundraising to get herself to Nationals.  Ruby is one of the girls I coach in the Athletes with a Disability category in synchronized swimming at Variety Village. Nationals is out east this year and the girls did a great job raising funds. Madison was a good cheerleader/supporter and did her job of getting people over to Ruby ‘ s table.  Ruby and her Mom Sara spent the whole day at Walmart and raised lots of money for the cause! It was so nice seeing Madison more like herself today and not so much under the weather. Her and Ruby made a great team!

On our trip to the pharmacy this morning to pick up Madison’s refill of puffers, we went to Sunset Grill for breakfast. James and I watched Madison sit independently in her booster chair, using her fork to eat her breakfast and it made us think that 1.5 years ago she had to be tube fed and now she is eating by herself with a fork.  It’s so crazy to think all of the things she has accomplished in such a short period of life.

We then went for a nice walk to the park for the first time since the snow has melted. Madison went in her swing that she loved this past summer and she tried out some of the other playground equipment for the first time. She is a big fan of the slide! The only thing we realized is that her AFO’S get her legs stuck so once she is sliding on her own we will have to think of a way to keep her legs from getting caught…maybe head first!

Thanks to Grampa Gregoire we were able to enjoy Duckworth ‘ s Fish & Chips for dinner. Thanks for the great dinner Nana and Grampa and for waiting in line in the rain. This was Madison’s first time having fish and she loved it!