I have introduced you to 2 of my roomates and I would like you to meet another one!

Janelle has been my roommate since I moved in August 2015! Janelle has Cerebral Palsy just like me….but not like me! Just you like you and I are different Janelle and I are different.

Here is a refresher on Cerebral Palsy in case you forgot! I found this information on the Cerebral Palsy Alberta website 🙂

Cerebral Palsy (CP) is a term used to describe a group of conditions affecting body movement and muscle coordination. It is not a disease. Medical dictionaries define CP as a “bilateral, symmetrical, non-progressive paralysis resulting from developmental defects in the brain or from trauma at birth.”

CP can be as mild as just a weakness in one hand, ranging to an almost complete lack of movement. Sometimes the movements of people can be unpredictable, muscles can be stiff or tight, and in some cases people may have shaky movements or tremors.

WHAT ARE THE CAUSES OF CEREBRAL PALSY?

Any damage to the developing brain, whether caused by genetic or developmental disorders, injury or disease, can result in cerebral palsy. The damage to the brain is in the region that controls and coordinates muscular action. Most often it occurs during pregnancy, labour or shortly after birth. Most cases of CP are called congenital cerebral palsy because they are related to the development and child-bearing processes. The condition is not inherited.

Acquired cerebral palsy, usually occurring before two years of age, is less common. It is usually caused by a head injury (motor vehicle accidents, falls, child abuse). CP can also be a result of a brain infection. Cerebral palsy, except in its mildest forms, can be seen in the first 12-18 months of life as it presents itself when children fail to reach movement milestones.

JANELLE’S STORY
•Janelle was born a healthy baby
•When she was 4 weeks old she developed a vitamin K deficiency
•Because of this she has a developmental delay and Cerebral Palsy – QUADRIPLEGIA which affects both arms and legs and can affect muscles in the trunk, mouth, and face

What is vitamin K?

~Vitamin K is a substance in our bodies that helps our blood to clot and stops bleeding.
~All newborn babies have low levels of vitamin K and are therefore are at risk
~Vitamin K is given by One injection just after birth and should protect your baby for many months.
~If babies do develop VKDB, it can cause severe harm, including death or severe brain damage.
~Janelle did receive this shot but her body did not absorb the vitamin k.

HOW CP AFFECTS Janelle and I
• We have to sit in our wheelchairs a lot.
• It is hard to understand me.-Until you get to know me!
• Janelle is unable to use words
• We ride in a special van with a ramp. This means we can never go anywhere together unless we take two vans!
• We eat different than you. We have a feeding tube that goes in our stomach.
• But I can eat once in awhile.
• Janelle is unable to eat by mouth like I can

Janelle likes watching cartoons and music videos with me

I use a walker which helps stretch out my body.

Janelle uses something called a Standing Frame.

The standing frame helps stretch our her body as well.

A typical day for Janelle looks like:

Staff do exercises with Janelle In the morning. In the afternoon she like to watch shows like cartoons and YouTube videos on the tv. She loves pop and Disney music. We get out of our house and then go for walks. She loves her stuffed animals and toys. Janelle is crazy about toys and being with her family and roommates. She always loves her baths and showers every night. I love being her roommate and friend to Janelle.

Here is a picture of Janelle and her family

I hope you learned something I sure did!

Remember “Everyone is Different!”

So, this really reminds me of when I was in school and when, it was summer holidays, spring break and other days that we didn’t have to go to school. Covid-19 hasn’t been really bad, or anything easy, it’s the new normal. I have been learning how to keep myself busy and be more patient. I have been at home since March. I think it was good at the start because I wasn’t feeling the greatest, but I’m feeling better than I was. Maybe it was hard at first to know what to do all day at home. The 1st Friday in March I went to see my friend Theresa and her mom Victoria to celebrate Christmas so I had a bunch of colouring books and word searches. So I learned how to keep myself busy in the afternoons with the colouring books, word search books instead of going to Centra Cam. My mom brought my walker from Centra Cam so, I could use it at home.

I got my calendar full of activities again and since the middle of June I have started doing some activities with the Cerebral Palsy Association in Edmonton. Every Monday afternoon we do yoga class, Tuesday afternoons we have dance class and one Friday afternoon we had karaoke. I’m really enjoying these classes it’s on the app called Zoom.

For Canada day I went to a Canada day convoy concert at the recreation centre with my roommates Craig and Theresa. We got some Goodie bags. It had some pancake mix and some temporary tattoos, Canada flags and an activity book. Becca left the van door open and we were able to listen to the music. Then, I got back from the concert and I coloured some butterfly pictures in my colouring books. In the evening of Canada Day we had a game of Yahtzee with Melissa and Theresa. Craig put music from YouTube on the T.V.

We had My mom’s birthday July 3, I decided to get a pot and some flowers for her birthday. I painted the flower pot a rainbow design and wrote a nice note on the pot. On her actual birthday we sat on my deck and we had smoothies and ice coffee from McDonald’s. During this time of COVID I cannot go home so, when it was time for Singing “Happy Birthday” I Face Timed with the family.

My brother Luke’s birthday was the weekend after mom’s birthday. So, I decided to do a painting for his birthday. I knew that I wasn’t able to be there to celebrate but I didn’t want him to think I forgot about his birthday so I made him a painting of Star Wars Luke Skywalker on an canvas. He loved it. We had to Face Time when it was time for cake. I think when it’s back to normal and we are together we will do a big birthday party with everyone’s birthday. I felt I was a part of their special day.

My friend Teresa is in the hospital with her hip surgery so I made her a homemade card and my mom brought her flowers.

Last weekend, I was able to try out a new wheelchair that I could lean back, my mom has to do paperwork for it today. Do you remember when I was really uncomfortable in my wheelchair and no one could figure it out.?It turns out that I was sitting too long in my wheelchair and I should lay down for a little while during the day. I’m getting a new wheelchair that leans back.

Yes, I’m missing going to Centra Cam this time of year we would have been going on tours. We usually get to go the Wetaskiwin pool, Camp LG Barnes, and the outdoor pool in Forestburg. In the summer months we would have a fun day in the park and outside at Centra Cam. We would be doing drum circle in the gazebo. For fun days we would go to play baseball games and some outdoor activities with everyone. Then the summer was over we would throw out a big party to celebrate.

For my birthday I got a a new blanket for my bedroom (how do you like it)?

The perfect sunshine summer day is when you can sit outside and colour in your colouring books with YouTube playing in the background. It’s been about five years now since we moved here. Its a amazing journey and I’m enjoying every minute, every hour and every second. My favourite thing to do on the weekend would be to sit outside on the deck and colour while hanging out with my roommates and friends.

Becca, Kat and I went to the valley for a walk, one Sunday afternoon, it was pretty good for my power chair but one part was a quiet rough, but overall it was a good walk on a Sunday afternoon with great friends. Now that it’s COVID we have to wear masks and walk 6 feet apart.

Today we had a good visit with grandpa Raymond and Shandy from Ontario. My Grandpa Raymond builds cupboards for people houses and Shandy works at a plant that makes car parts. Every summer they make a road trip out to Alberta. This year there was a family reunion in Lloydminster. With COVID-19 we weren’t able to make the trip . We had a great two hour visit on my deck.

The final project of the weekend was dying my hair red. What’s do you guys think?!

 

We also spent time resting on the deck in the sunshine

Summer 2020 is a different experience that I never really expected before in my life.