Saturday, October 27, 2012

Almond Fresh Milk by Earth's Own - Delish!

At the She's Connected conference I attended this past weekend, one of the sponsors was Almond Fresh.  They have a line of almond milk drinks in a number of flavors.  Original, chocolate, vanilla, and coconut.  They are even coming out with a new flavor for the holidays - Almond Fresh Noel Nog.

They gave out drink box samples of the original flavor to take home.  I didn't get a chance to try them, because my daughter decided she loved them!

I did get to to try both the chocolate and coconut flavors while at the conference.  Both were very good, but the coconut in particular struck my fancy.  I'm really hoping to try using the coconut almond milk as a substitute for water or chicken broth for cooking rice in.  I think it would be delicious!!

Since I have a genetic disorder which means having a low protein diet, I am really excited about this product and being able to share it with others.  At 1g protein/250ml drink, this is an amazing product for us. Regular milk has 8g of protein for the same volume.

I went to my local Sobey's this week, and was disappointed to not find this product there.  I will have to check the larger Sobey's to see if it is there, because I really want to try cooking rice in it, and my daughter would like more of it to drink!

Friday, October 26, 2012

Shes Connected Conference #SCCTO: The Panels and Speakers

This past weekend I attended the She's Connected Conference at the Metro Toronto Convention Center.

Up early on Friday morning in order to catch the 5:45am Greyhound bus to Toronto, I was pleasantly surprised to find that Greyhound has updated their services since last year.  The bus had wifi and each seat had a plugin for your phone/laptop/electronic device!

I arrived! After registering, I sat down at a random table, to discover that I actually knew a couple of the people from talking with them on Twitter.  Before going to the conference, I had prepped a list of the people I wanted to meet that I have talked with online.  I was able to meet most, but they were all very brief introductions because the conference was so busy!

She's Connected Conference Badge #SCCTO
I went to the conference to learn, therefore I attended a lot of sessions. Content Curation and Content Management, Content Mix, Visual Elements, and the FacingCancer.ca panel were the ones that I personally enjoyed and learned the most from.

I thoroughly enjoyed the keynote session by McDonalds Canada, particularly hearing from the director of Ronald McDonald Houses across Canada.  I was able to talk with her directly afterwards, and told of our experience being on the waiting list for RMHC last year, and a suggestion based on our experience of needing a place to stay before our baby was born.  They needed me to be in Toronto in case of labour beginning since the baby needed to go to Sick Kids within minutes of being born.  At the moment, social workers cannot apply for space at RMHC until the day the child is born.  She was genuinely pleased to hear from me, and thought the suggestion was excellent feedback that she wrote down to take back to the company. 


Here are my top 5 things I learned:

1) Make a Content Calendar. When performing a social media job on behalf of a company, write up a calendar of upcoming tweets and posts to be vetted by management.  Arrange ahead of time whether you can respond to people without comments being vetted first.  Social media is new, and companies are not used to it yet. With experience the company can trust you to represent them.  Even if you aren't representing a company, a content calendar can be really handy for yourself personally as well!

This has already come in handy, as I started a contract this week facilitating a group with the YWCA where social media will form a large part. We have arranged to have any planned posts/tweets sent ahead of time to management to approve, but I am able to respond directly to anyone who contacts me online.

2) Pictures, pictures, pictures.  Pictures are extremely important in blogging. Yes, I knew this already, but I hate finding pictures to use through creative commons licensing.  It takes forever to go through to find one I want to use.  I'll have to try to remember to take more pictures. With a smartphone in my hands, this should be easy enough.

3) Keep writing.  Be yourself and keep writing.  Having good content on your site/blog is the best way to get readers and visitors.  No matter what your topic is, be yourself and keep writing!  I struggle with this because I've previously wondered what to write about.  The answer is to write about whatever your interests are!  That could be writing about a niche topic, or writing a variety of everything.

4) Learn from others.  Ask people what personal experiences or people have influenced their lives.  You will meet fabulous people, and hear stories that you will not have anticipated.

5) Community is amazing.  It was unfortunate that more people did not attend the FacingCancer.com panel.  It broached the topic of community, and how online communities in the face of adversity or difficulties can be life changing for people.  Although cancer is not part of my personal story, I was able to share about how being online was an amazing, humbling experience while looking for an organ donor for our infant son last year.

My next post will be about meeting the amazing brands and companies that I was able to meet at the conference!






Monday, October 22, 2012

Have You Made the Most of Your Benefit Plan?

Have you thought about your benefit plan at work recently? Most benefit plans run on a calendar year, which means the benefits you can use in one year end on December 31.  Even though we are only at the end of October, the end of the year will come quickly!

I am extremely fortunate to work for an agency that still provides health benefits to their permanent employees who work more than 24 hours/week.  Ideally, I would love to work 16 or 20, but I work 25 hours a week with this employer in order to maintain access to the benefit plan.

I realize that not everyone has access to a benefit plan, but if you do, you should make sure you are using it!

By using your benefits, you could be using services like:

  • Accupuncture
  • Chiropractor
  • Dentist
  • Glasses or Contacts
  • Massage
  • Naturopathy
  • Nutritionist
  • Optical Services
  • Orthodontist
  • Orthotics
  • Personal Counselling
  • Prescription Drugs
If you pay into your benefit plan from your earnings, make sure to claim this amount as a medical expense on your income taxes.  Sometimes the amount is listed on your T4 slip, and sometimes it is on your last paystub for the year.  Also, for any services that are not 100% covered, the portion that you pay that is not covered can also be considered a medical expense. 

I've already booked monthly massages for November and December in order to make use of my benefit plan.  Take a look into the details of yours, and make sure you are using them!

Monday, October 15, 2012

National Infant and Pregnancy Loss Remembrance Day

October 15th is National Pregnancy Loss and Remembrance Day.

We are coming up on October 24th, which is what would have/could have been the 1st birthday of our son Kyle.  He died at Toronto Sick Kids last November from an E. Coli infection while waiting for a liver transplant, which was to be the treatment for a genetic metabolic disorder called Ornithine Transcarbamylase Deficiency aka OTC Deficiency.

It's an extremely difficult genetic situation to manage with drugs until the point of transplant. But the doctors were hopeful. They were willing to try everything  possible for us. It was the very first time that Sick Kids was dealing with a case where it was known before birth that a liver transplant would be needed.  In order to have him on the transplant list immediately after birth and to help search for a living liver donor, we found out his blood type before being born, through the extra sample of amniotic fluid during the pregnancy.  There were high risk pregnancy specialists to look after my health to keep my ammonia levels low during the pregnancy and birth, genetic teams from four different hospitals, and transplant teams from two hospitals. It had also been arranged for us to fly with him to Yale university hospital for an experimental hepatocyte transplant of liver cells, and to be flown back to Toronto if a liver were to come available while we were there.

Toronto General had more people apply to be a living liver donor than they had ever had apply for a child before.  Apparently many children have no applicants at all, and their only chance is with a cadaver liver. At the last moment, only a few days before I delivered, they even decided they would be willing to try a transplant with the wrong blood type if one came available because of the severity of the situation. Again, this was something that had never been done with a child at Sick Kids, only with adults. Pretty amazing preparation work behind the scenes with all the teams co-ordinating together.

I'm still dealing with this death a year later. I'm angry. I didn't expect to still be angry after a year, but I am. I'd like to be rid of the anger.  Unlike the doctors, we didn't actually expect our son to come home because we understood how hard it is to treat OTC.  But in all the potential situations in my mind, one that didn't enter was that of an E. Coli  infection! E. Coli? Really? Found in the picc line, it most likely got there from one of the many many staff not washing their hands properly. There were dozens of staff handling him each day... Its impossible to say which person caused it.  The almost impossible to treat genetic condition was actually being managed successfully. Without the infection, he would have made it through to being transplanted. Long sigh. The infection was found on day 8. It became septic and caused brain stem damage.  Test results on day 14 showed the infection had caused damage to the part of the brain that tells your body how to move. It had also resulted in no response to sound or visual stimuli.  His last natural movement was on day 13.  His brain had actually atrophied (got smaller) from one week before. All from the E. Coli infection, and not the genetic condition.

The treatment options they were using last year were very new, and as I already stated, we were extremely appreciative for the great attempts at treatment that were made.  We know the treatment methods are new, because in 2003, our first son Colin was born with the same condition. So, yes, you read correctly, this was the second time we went through a neonatal death.  Transplant was not a treatment option for infants then. We went through that pregnancy learning he was affected at around 20 weeks knowing there was no treatment.  We did "care by parent" at the hospital, and he was held the entire time he lived. He was a typical newborn until the 40 hour mark, at which point his system started shutting down from poisoning. We had been told to expect him to go into a coma, which he never did. His systems just gradually shut down, and he died at 52 hours old, on his third day of life.

After this first death, I had a miscarriage the next year at 9 weeks. Physically more painful than any of my labors, and difficult in and of itself,  it also brought up all the emotions of Colins death. Our daughter was about four at the time, and I remember her crying harder than I've ever seen her cry before when I came home from the hospital and said the baby had already died inside of me.

Between the death and the miscarriage it took many years before I was ready to try again. Which unfortunately didn't work due to the stupid E. Coli infection.

Takeaways

People. The positive. People are amazing. The amount of support we had from others was unbelievable. When I miscarried, people phoned and said "I had a miscarriage too. I'm so sorry."

The number of people who applied to be an organ donor for Kyle made us extremely humbled. Many others who couldn't apply because they didn't match the strict criteria (which included being under 150 pounds) signed up for the organ registry.

People came to visit us at the hospital in Toronto, sent cards, brought food and gift baskets, cleaned our house, mowed our lawn, raked our leaves, gave us money, looked after our daughter, bought thoughful gifts for our daughter, and sent us on a needed and delightful family outing to a musical in Toronto after the fact.

Many new friends were made. Acquaintances became friends. Both in real life and online.

People. The negative.  As much as people have supported us, there are now groups of people I'm not very comfortable being around.  I can't be around people who talk about how difficult being a new parent is. Or around those who don't treat their children well.  I skip social events like baby showers unless they are family or already a really good friend.

So many people around us have watched us go through all of this.  They remember each instance with "I was pregnant with X at the same time."  They have trouble being around us.  I completely understand because I would probably be the same way if the situation was vice versa.

Medical Recognition. Due to the huge amount of background work for us last year, there are many more medical professionals who are now aware of this extremely rare disorder.  There have been two other baby boys born in Canada over the last year and a half with this disorder, and although their mutations were less severe than ours to begin with, both have survived.  The hepatocyte cell transplant that they were going to send us to the States for, is now offered in Canada as well due to our expression of concern as to how difficult going to another country would be for us as a family and that we would have no social support being so far away.

If You Want to Offer Support.  If you know someone going through a loss and you can think of something to do for them, just do it.  People would ask all the time what they could do. To be honest, we were so overwhelmed I had no idea. I also didn't like asking for anything, even if it was needed.  We were told by our pastor and social worker to learn to just say yes.  So whenever someone had a concrete offer of something "Can I bring you a meal? Can I come visit you? Can I rake your leaves?" I said yes.  It was the best advice we could have been given.  Saying yes was hard for me, but it made our lives easier, and provided a way for people to help when they felt our helplessness.  We were overwhelmingly humbled by the love around us. So my advice, is to think of something concrete to do for your family/friends and just do it. 

Final note: OTC is one of 6 different Urea Cycle Disorders. I am a carrier. If I get pregnant again, with each pregnancy there is a 1 in 4 chance that the baby will be an affected male, and with the specific mutation that we have, means that without treatment the baby will die at 3 days old from ammonia poisoning.  There is another 1 in 4 chance that the baby will be a female carrier.