PWS Awareness month 2016

Today is the first day of Prader-Willi syndrome awareness month. Darcy and I have both started our challenges. Darcy has chosen to run 151.113 miles this month ( that’s right fellow Canadians, that’s miles not kilometres!) the reason for that is PWS affects chromosome 15(q11-13). Clever right?  My challenge is to attend 31 barre classes in may(31 days this month!) 

Darcy and I will be posting daily on Facebook sharing our progress. To keep track of our challenge we have made this awesome poster :

Please cheer us on this month as we fight to complete our challenges and help raise awareness towards this genetic syndrome that affects our daughter. 

If you want to take it one step further and start a challenge of your own, that would be amazing! We are also fundraising to help raise funds for critical research and to help improve the lives of those affected by this genetic condition. If you would like to make a donation, please contact me – mira1617(at)gmail.com and I will provide you the information on how to do so. 
Thanks so much for your support!

And since I have completed 1/31 barre workouts, here is an updated photo of our chromosome 15!

Miranda

Halloween

Halloween. It is a candy/treat holiday. And a hard time for those with PWS.

Our daughter, who is now just three, for the first time really understood the concept of trick or treating. She knew, if I say trick or treat to the person holding the bowl of goodies, they will give me one. She was very good in saying thank you. And was very excited about everyone giving her something in her bag.

We went to a really large mall, and it was packed. I have been sick, so it was already over stimulating for me, all the people. But it also became apparent that the chaos was too stimulating for her as well. We had a few meltdowns and eventually we left.

When we got home, we took her to a few neighbors houses, and the experience was very present. Not to mention since they knew us, they loaded her up.

Now, she has all these treats. Treats that she cannot have. Last night we introduced the “switch witch”. I explained to my daughter that when she goes to sleep, the witch will come and replace all the treats with a nice present. That was the magic word – present! She was so excited she went and waited by the door, hoping the witch would come right away.

After we explained again she needed to be asleep…We got her treats ready, and then she went to bed without a fuss.

She was excited and happy with her new Elsa Barbie this morning. I hope that next year it will be as successful.

Happy Halloween!

Happy Birthday!!

Today is my daughters birthday. She is three years old. I am amazed at how far she has come! She is learning new things everyday. The hopelessness I felt when she was diagnosed, the fear I felt that she wouldn’t be able to do anything… It is all melting away daily as she proves to me that she will have no limits.

What a change three years have made!
Then

Now

Inking it up for PWS

I have an amazing friend who is on the same PWS journey that we are on. She has a beautiful daughter around the same age as our daughter. A bit ago, she came to me and asked my opinion for a tattoo she wanted to get. Today, I want to share the finished product with you all!

This just might be the best tattoo ever!

Tracy, I love you and your adorable family. I have no doubt in my mind that our children’s future is looking brighter than ever! Now get out there and show off your foot! XXOO!

Calgary One SMALL Step walk

Today our family took one SMALL step in Calgary with a bunch of amazing friends who are on the same PWS journey that we are. They raised over 40,000 dollars this year for research! Seriously outstanding!

Giving up some control.

Today was a hard day in our house. Mostly hard on me – Mom.

Our daughter, lives a life of food micromanagement. I know everything she eats, how many calories she has consumed, and how much liquid she needs to still drink in the day.  We have never let anyone watch her besides family, as who is qualified to take care of my daughter? I have a hard time trusting anyone with her, because who will take as good of care of her as we do…

This is how much I micromanage my daughters meals. Sure she eats other things, but life is so much simpler when I have everything planned out. And I am lucky she loves my cooking. 😛

Today I did one of the hardest things ever. I sent my daughter to her first day of Early Education (school) alone on the bus.  She will spend 3.5 hours there, 4 days a week. She will be in the care of people who are essentially strangers to our family, and I have to trust that they are going to follow our guidelines and take good care of my child.  My heart broke today as I left my child on the bus.

 

I signed up for a barre fitness class for this month and have booked a class for every day that Emelyn is away. I think that will help me make the transition. And from what I hear, I might need the assistance more than my daughter. I got a message about half hour after she got to school from a friend that saw her. She informed me that my daughter looked happy and super excited to be at school. I cant believe how relieved I felt. Such a stress lifted.

So, instead of focusing on that sad crying face my daughter is looking at me with. I am going to focus on her beautiful smiling face that she started out with. I cant wait till she can tell me how much fun she has at school.  Its a big step giving up some of the control I have over my daughter. However, I can always keep an eye and keep everyone following my standards for her care. 🙂

Today is the start of the future. 2 years till kindergarten. then 12 years till graduation… then hopefully some post secondary education if she wants…

Today we started our new life long routine. Wowzers!

We took one small step in Delta BC

Yesterday was amazing.

It’s hard to think of any other word to describe how great yesterday was. It was one of those days that I just didn’t want to end.

The day started off with us and some of my family traveling from Vancouver island to the mainland via ferry.

And then we went right to the walks location. It was an hour before the event and there were already so many people– plus we met up with my sister, her boyfriend and our cousin. Total we were a big group of 10 of us.

The host of the event Susanne, said she saw us coming, a sea of blue across the field and came quickly towards us. I have to tell the world– I received the best hug from her in the entire world! Honestly, it was so amazing, I thought I was about to burst into tears.

The weather was hot… But that didn’t stop Elsa, queen of Airedale from making an appearance. I don’t know who was more excited, Emelyn or myself… Or Darcy who was all about the photo bomb!

The event was spectacular and they raised over 25,000 dollars plus I am pretty sure they still have donations coming in!

After the event, Susanne was kind enough to host a BBQ! Darcy, Emelyn and I got to end the evening having a fantastic time with two of the most awesome PWS mama’s we’ve met! A special thanks to Mandy for that amazing chicken– seriously! And Susanne– sorry we drank all your white wine! Ok not sorry!

A big awesome thanks to everyone that came out and supported us as Darcy, Emelyn and I took another one small step at the delta walk! And thanks to everyone that has donated this far– Emelyn’s future is looking brighter every day because of people like you! And a big thanks to Susanne and Mandy for making our family feel so welcome! Love you all!

Another One SMALL Step walk this weekend in Delta BC

This Sunday we will be attending our third One SMALL Step walk of the year. If you haven’t had a chance yet to make a donation, we would be very thankful if you would support this worthy cause. Any amount is appreciated, no matter how big or small! Every little bit helps bring us another step closer to a future where my daughter and others like her won’t have to love a life always feeling endlessly hungry.

To make a donation to our Delta One SMALL Step page click here:

http://onesmallstep.fpwr.org/dw/users/teamemelyn/Delta2014

If you are in the Vancouver BC area, please come and join us! The above
Link also has location details!

Thank you for your support!

What Facebook Means to Special Needs Families

Before I knew there were groups on Facebook, groups that knew what we as a family were going through with our daughter and PWS… I felt alone. Now, I feel as thought my family has grown, a new type of family. Facebook has allowed me to meet so many amazing people. This is the community that Facebook has made possible. I am so thankful.

This is my first time re-blogging a post from someone else’s blog. I Just agree with it so much that I needed to share it with everyone!

Tales From the Plastic Crib

Facebook is ubiquitous these days; every website, article, operating system and mobile device has a way to share directly to it. It’s become so popular with the adult masses that today’s teenagers find it lame (which makes me feel ancient and lame, myself).

These days it’s mostly a telephone and email replacement for extended family updates. Aunt Judy up in Michigan can see how sweet Bobby and Sally are doing without leaving the comfort of her couch.

It’s a dumping ground for Instagrammed pictures of people’s kids, dinner, and anything else they happen to take a picture of that day. It’s confused itself into thinking it’s Twitter, and added the ability to use hashtags. It’s where people feel comfortable airing their political and religious beliefs and end up getting into comment arguments with that guy from high school they barely remember, but accepted his friend request anyway.

Yeah, Facebook is…

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Edmonton’s One Small Step walk SUCCESS!

It has taken me a little over a week to finalize entering donations and to just decompress from the big event.  Today I entered the last number, and I am happy to announce the success of Edmonton’s One SMALL Step walk !

The Grand Total is : $12,021.55 CND.

A few of Alberta’s PWS Families that attended our walk. We had people from Grand Prairie, Calgary and Red Deer!

At our Event, we had a Zumba Warm up before the walk. We had a lovely lady named Mariela come and volunteer her time.  She was fantastic. You can check out her facebook page here

Yes this is me… Getting my Zumba on!

We also had a sweet young girl volunteer her time to do some face-painting for the children 🙂

My daughter Emelyn getting her face painted!

 

A display I made highlighting One SMALL Step and featuring some of the amazing PWS children I know.

 

We were joined by Dr Wevrick and members of her research team from the University of Alberta. It was so fantastic that they came and shared some information on the research they are doing on PWS and Genetics!
 

 

Group photo of everyone that attended Edmonton’s 2014 One SMALL Step walk!

 

Let the walk begin!

 

Sweet little Cadence and her awesome wheels!

 

I want to thank everyone for their support towards this event. Without your generosity and support, this event would not have been possible, and we would not have been able to not only reach our goal of raising 10,000$ but we surpassed that goal by 2 thousand dollars!  It is because of you, that we are continuously taking more steps towards a future where children like my daughter Emelyn will not have to feel constant hunger, a future where they will not have to live a life where they are being held back by the challenges associated with Prader Willi Syndrome.  Because of you, we are one step closer to a future where anything is possible!

Our family thanks you!

Thank you!

***And a special THANKS to Kelly Lake for coming out and taking these wonderful photo’s of our event! ***