Posts Tagged ‘Prader Willi Syndrome’

15/20 December Blog Challenge: A Difficult Time In My Life

I think that the hardest time in my life was when my daughter was born. It was such a confusing time. I didn’t know what was happening, why it my daughter wasn’t feeding or thriving, and my fiance though he was there for her birth he had to leave after about 36 hours as he was away for work (military).

Its hard to remember the details of that time. Sometimes I feel like it is all a blur. To give you some insight into the first bit of our daughters life, let me share with you some of what I remember:

Our night in the hospital just after she was born, was not great. She wasn’t feeding and was very floppy, and the nurses were becoming concerned.  They took her to the nurses station to keep an eye on her for the night, and let us ( mom & dad ) get some much needed rest.

The morning was the start of the scary part of that first 24 hours, and the beginning of our journey. We were woken up by the nursing staff, and brought out to the nursing station to see our daughter. I was so confused. I didn’t understand what was happening, why it was happening, and I was terrified. I cannot get the image of this photo out of my head even to this day. When I think about my daughters birth… this is what I see.

emelyn1

The nurses told us that our daughter hadn’t improved during the night and that they wanted to transfer her to a higher level hospital that had the expertise to handle complications.

I was so confused, I was so scared. This wasn’t what I imagined it would be like… It was as if the fears you push aside thinking they are ridiculous were all coming to life.

We were moved to another hospital. I remember the long ride in the ambulance. I was sitting up front while my daughter was strapped in the back. It was the longest ride of my life.

I spent 8-10 hours a day at the hospital with my daughter everyday(for 26 days). I remember a lot of the time we spent waiting for doctors or specialists to visit, or test results to come back. It was so hard. I am so impatient and I just wanted to know what was happening. No one had answers.

I remember when the geneticist first came to see my daughter.  She simply looked at her and made some speculations, ordered blood tests and was gone.

Genetics… I don’t think this really registered to me. I just thought my baby was sick, I didn’t really consider that something might be wrong in her genetics. Well, Google is usually a very helpful tool… unless your child is in the hospital.

I took the time to take note of the characteristics that were present with my daughter, the symptoms that the doctors keep mentioning when they examine her.  I entered them online, and I Googled.

A list. That’s what my Googling gave me, it gave me a list of about 20 disorders that had the same basic traits of low muscle tone and poor feeding which were present with my daughter.  I remember reading through the list of syndromes and ailments. Some were worse than others, some actually didn’t seem that bad at all.

This takes us then to the day I received her diagnosis.  I can still remember sitting in our cubicle cuddling my daughter  and the Doctor pulling up a chair in front of me.

“We got the genetics report back, and we have a diagnosis.”

Remember that list I just mentioned? And how I said some disorders on the list were better than others. What I didn’t mention is that there was one syndrome on the list, that with with all my heart, wished it wouldn’t be.

Then the words “Prader Willi Syndrome” escaped from her lips. The words that I was wishing it wouldn’t be. My heart felt like it had just shattered.  Anything she said after that is a complete mystery to me.

I had read about Prader Willi Syndrome. I knew what this meant. That my daughter would be hungry for life. That she wouldn’t feel full after eating. I didn’t know what to do.  I was so afraid, heck, I was already afraid of being a mom, about not knowing how to be a good one… how was I going to be a mom to a special needs child. One with such a rare complex disorder.

I remember meeting with the genetic counselor. I remember her explaining the genetics of it all… stuff I had already Googled, and even though I didn’t understand much of it, I remember only having one question when she asked.

Will she be smart?

This was the hardest time in my life. I don’t know when the hard part stopped… or if it is still happening. Those first few months seemed so dark and depressing. And while I am still in some ways coping with the realization of the diagnosis…. If I could see how bright and amazing our daughter is now… I would have saved myself from so much sadness.

She is smart, cheeky, clever, so so so funny, gentle, DETERMINED, kind and just absolutely beautiful. We are so lucky that she is still in the first stages of her diagnosis and ISN’T hungry yet. I truly believe that she is amazing and that she is going to keep proving to the world that her diagnosis is not going to hold her back in life.

Mira

13/20 December Blog Challenge: My Fears.

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My fears…

I have many fears. Throughout my life I have been afraid of many things, this or that, it doesn’t really matter anymore.  I have learned that when you become a mother/parent, that those fears you had all start to seem pretty trivial.  Now my fears all seem to revolve around my daughter.

If you are a follower of my blog, you probably already know about my daughter and her genetic disorder. For those of you that are new, My daughter has a rare genetic condition called Prader Willi Syndrome. One of the most dangerous symptoms of her condition centers around eating. Her body doesn’t metabolize food like her typical peers, in fact her body can only handle about 60% of the calories that her peers can. With the slow metabolism there is ( and thankfully this hasn’t kicked in yet for our daughter) also an insatiable hunger that is a main trademark of PWS.  Imagine never feeling full, no matter how much you eat.

The hunger of PWS is the root of many of my fears. I fear that my daughter will never feel full after eating. I fear that this hunger will control her life and she will not be happy. I fear that a remedy will never be found to help her. I fear that the hunger will drive her to be someone that she is not. And I fear, more than anything, that someday… for just one moment my attention won’t be on her, and she will gain unsupervised access to food and in that time she will eat herself to death.

These are horrible things to be afraid of. These are things that no one should have to fear. Food, it is such a complicated topic with PWS…. We need food to live… it’s what sustains us.. gives us life… but for my daughter is the one thing that is also so very dangerous.

I also fear that people will not understand my daughter and the seriousness of her condition. This is why I started my other blog ( Fight the HUNGER) which also has a facebook page. It is my mission to spread awareness for PWS, help fund-raise for research that will hopefully help with the symptoms of PWS and to do anything I can to help my daughter live the best possible life she can while managing her syndrome.

76_French-Emelyn-00052I fear that I will never be able to give her the amazing life she deserves… But I will never stop trying.

whoa these blog posts just got real…

Mira

6/20 December Blog Challenge: If I Won the Lottery.

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My Fiance and I sometimes buy a lotto ticket. We figure for the 5 bucks it costs, it provides us with a few days of entertainment. We spend the time thinking up ideas on what we would do if we won the lottery.

What would I do if I won the lottery today differs greatly from what I would do if I won the lottery 4 years ago. Previously I would jump into a life of luxury – travel, buy a fancy car, a big house, a green dress… but not a real green dress – I hear that’s cruel.

Since having my daughter my views have changed greatly on what I would do if I won the lottery. As I mentioned in my introduction post at the beginning of this challenge my daughter has special needs. So, what I would do would greatly reflect upon that. And of course, this winning the lotto scenario I am writing about would be a significant amount… Like 20 million would be great! LOL.

First thing I would do ( besides flying out and grabbing my awesome friend from NYC – you know who you are!) is probably take my fiance and daughter on a really fun vacation. Somewhere for dad to relax, and our daughter to swim in a beautiful pool everyday!

I would build a house. A house that would be our forever home and a safe place for our daughter. Complete with a custom kitchen where it will be easy to make food stay out of sight and inaccessible.  I would want a large fenced in backyard for her to play in. And definitely a king sized bed for us. I would love a walk in closet and a ensuite bathroom with a separate tub and shower… or just a shower… unless your a kid, does anyone have time for a bath these days?

I would also buy a new vehicle. I am currently driving a ford fiesta that I purchased before i knew I was pregnant…. My car is tiny and is not made for a family.  A mid sized SUV would be great!

I would also donate regularly towards programs and research that deal directly with my daughters rare genetic syndrome ( Prader Willi Syndrome). I would like to make a difference and really help science and community programs work towards having the ability to give my daughter and others like her the best possible future.

Other than that, I don’t know what else I would do. I can really only think of things that I would do for my daughter – maybe hire a personal therapist to work with my daughter regularly to help her reach the milestones she is delayed at or to help give me the tools to do better with her needs.

And probably most importantly, What would I do if I won the lotto… I would max out all our RRSP, RDSP, RESP and TFSA’s so it will always be there if anything ever happened… and then the rest would be put into the bank and we would live on the interest!… hopefully then to never run out of money.

It is nice to dream… maybe someday 🙂

Mira

1/20 December Blog Challenge : Introduction and Recent Photo

Hi…

Hello…

Hey!

I have been sitting here for a while contemplating on how I should start my introduction. Formal or more friendly… or somewhere in between. And really… What should I tell you about myself… I can honestly tell you that I just Googled it. Google has the answers to everything, right? …

Actually that’s too much reading, so lets just wing it!

This photo is a selfie I took earlier today while running errands with the family. Im from Canada... It's really cold here!

This photo is a selfie I took earlier today while running errands with the family. Im from Canada… It’s really cold here!

Hi, My name is Miranda ( I usually sign my name on my blogs as Mira…Why? I think I might just be too lazy to type the last three letters of my name).  I am a 32 year old engaged ( to a super amazing guy) stay at home mom to one super amazing daughter who has special needs (Prader Willi Syndrome). I am also a hobby blogger. My two main blogs are this one, and Fight the HUNGER – a blog to help raise awareness about my daughters rare genetic disorder.

I enjoy fitness (obviously, since this blog has mostly been fitness challenges, LOL), blogging, gaming (World of Warcraft), social media, watching movies, baking, cooking, and eating my baking and cooking!

My life mostly revolves around my daughter. She has, in these past three shorts years, become a big part of my identity. Sometimes, when I am out without her, I feel lost… like a piece of me is missing. She really completed our family. I couldn’t imagine my life any different, and to be honest, I barely remember life before We became three. I am ok with that!

I am pretty sure that you will get to know me better by the end of this challenge, so as to not give away too much information to quickly, I will see you all on my next post!

Mira

Getting ready for PWS Awareness month 2014

May is Prader Willi Syndrome Awareness Month Usually for this month there is a challenge about giving something up. However,  to my family and friends, I would like to propose to you another challenge.

 

For the month of May, I would like to challenge you to try  and live life like my daughter will need to for the rest of her life.

 emelyn

I understand that life is chaotic, that it is busy and unpredictable.  This chaos and unpredictability is also in each person who is living with PWS life as well.

I have three options for the challenge, you can choose depending on the level of commitment you would like to give to PWS awareness month.

 


 

1. Commit just a week ( or two!! ) to counting your calories, and if you are up to it, set a HEALTHY maximum caloric limit that you will not exceed for this time.

 

2. Commit to tracking your daily calorie consumption for the month of May.  (This will provide great insight into your eating patterns, and you will be able to visually see where you are getting most of your calories and nutrition.)

 

3. Commit to setting a HEALTHY daily caloric maximum and tracking your calories for the entire month of May. (This is the closest reflection to my daughters daily life.)

 

Optional – Pair any of the above options with daily exercise.


 

People with PWS not only have an insatiable appetite, but also a metabolism that only works at about 60% of their typical peers.  This means that not only are they always hungry, but they need to be even more closely monitored in their calorie consumption.  Since the day Emelyn was born, I have monitored every calorie she has consumed. I spend hours each month specially preparing nutritious low calorie meals for her so that she will get all the nutrition and food her body requires. Taking care of Emelyn is a full time commitment.  She requires healthy low calorie meals, as well we plenty of physical activity( which is hindered by her low muscle tone causing her to tire very easily).

I hope I can count on you to help spread awareness of this rare and life threatening syndrome.  With your help we are one SMALL Step closer to eliminating the challenges of Prader Willi Syndrome.

To track Calories and nutrition we use the myfitnesspal App which is available for iPhone, Android, Blackberry, and Windows Phone. You can also use My Fitness Pal by visiting their website http://www.MyFitnessPal.com .  I am more than happy to answer any questions and offer any assistance you may need if you chose to partake in this challenge.