Friday, December 13, 2013

2013 Contest Winnings Totals

As a follow up to my post in July on my 2013 Contest Winnings at that point, I thought I should post the winnings for the rest of the year.

In July, I had won a total of $940 worth of prizes.

2013 Winnings (2nd Half of Year)

Google Nexus 7 Tablet x 2 (both my husband & I won one)  Kitkat Contest  Value $450
Google Play Codes from Kitkat Contest Value $30
$100 VISA Giftcard from Royal Bank Small Biz Twitter chat  Value $100
$100 Giftcard to Glamagirls from Tweenhood  Value $100
2 Books Muse & Secret Shared from @BookaliciousCA Value $30
$10 iTunes Giftcard from @PTPA  Value $10

2nd Half of Year Total: $710

Total for 2013: $1650

Saturday, November 16, 2013

Trip to Washington, DC - Tips from a Canadian

Last week we travelled to the Washington DC area from Southern Ontario, Canada.  We crossed the border in Buffalo, NY.  Here are my tips and tricks:

1) Take the scenic highways.  We took scenic highways on the way down, and some of the interstate highways on the way home.  The scenic highways, particularly those in Pennsylvania were absolutely gorgeous.  Travelling through the mountains is a must!  However, I wouldn't advise this trip for winter, as the slopes on some of the roads were crazy steep, and very well could be treacherous for inexperienced drivers in the winter. 

2) Stay outside of DC.  Accomodation within DC is extremely expensive, and still not cheap on the outskirts.  We stayed in Silver Springs one night, and in Bethesda for three nights.  Both are on the metro (subway) line, which makes downtown DC easily accessible.  We used Hotwire to book our hotels.

3) Take the Metro (Subway).  Don't attempt driving to any of the tourist sites.  Traffic is ridiculous.  Take the metro instead!  Buy a Metro card for $2.00, (the website says $5, but it changed to $2 in October) and put some money on it.  If you don't buy a card, every time you use a paper pass it costs $1 more than the fare using the card. The subway system was easy to use, especially when using Google maps for directions.  There are day passes available for the Metro, but unless you are travelling to many places in one day, I don't think it would be cheaper.  They are $14.00/day.  We did have someone pass us a couple day passes they were done with when we were putting money on our Metro card, and when we were done with them for the day, passed them on to someone else who was putting money on their card.

4) Smithsonian Museums.  Go to a couple of the Smithsonian museums.  Although accommodation is expensive as mentioned above, once you are there, being a tourist is inexpensive.  All the Smithsonian museums/galleries/zoo are FREE admission. 

5) Panera is better than Starbucks.  If you are looking for a good coffee, a bite to eat, and free wifi, head to a Panera.  It is a chain, that we do not have anywhere near us here in Canada.  The food was delicious, and everyone goes to use their wifi.  Nearly everyone had a laptop or tablet out while there.  I had a bearclaw, which is apparently an American pastry that I was not aware of.  I will buy one again!

We'll be heading back down next month for a couple days for a medical appointment, and I look forward to taking in a couple more Smithsonian museums, and having some delicious DC food.  We've kept our Metro cards, so we're all set!

Wednesday, November 6, 2013

Participating in Research Study at NIH for Urea Cycle Disorders

Note: i will add in some pictures later. My phone hasn't done a Google back up of the pictures I've taken yet.

Friday, November 8th would be our son Kyles second birthday. While being aggressively treated for Ornithine Transcarbamylase Deficiency (OTC Deficiency), a urea cycle disorder, with the hopes of having him obtaining a liver transplant, he acquired an E Coli infection at the hospital. The infection was not caught in time, and in doing the treatment for the OTC, dialysis was performed, which in turn spread the infection throughout the entire body.

Last year at this time, we had a follow up appointment at the
hospital. I'm hopeful that in my participating, new things will be learned that will help future generations.

This year, at this same time, I am at the National Institute of Health (NIH), in the United States, participating as a research subject in a study called MINI. It stands for Metabolism, Infection and Immunity in Inborn Errors of Metabolism. They had started the study with only urea cycle disorder patients, but have opened it up to all patients with inborn errors of metabolism.

Here is a link for more information on the study.

We arrived on campus on Monday night. We were booked in to stay at Safra Family Lodge while here. It is directly across the road from the clinic hospital. It acts as a Ronald McDonald House for families of adult patients. It is a very beautiful building, with 34 bedrooms, large sitting areas, a grand piano in one of them, and a large communal kitchen for the families to use. There is another building next door to this one for families of child patients.

On Tuesday morning, we had breakfast at the house. They have free muffins, bagels, toast, fruit, tea, coffee and hot chocolate available, as well as a section that is "house" food available to anyone that is donated by people who are staying and have made to much, or packaged food from residents who are leaving. Residents are able to stay for up to a month.

We then walked across the road to the clinic. There is transportation provided for those who may not be able to walk over.

Admission took about 1/2 hour, and then we went up to the room I was assigned to. Met with the coordinator, went through medical history, had a quick physical exam, had bloodwork done, met the primary doctor in charge of the study. Had a quick lunch. Had a liver ultrasound, which I've never had done before. Apparently my liver looks fine. Then went to the physio/rehab dept where they had me do a number of exercises and strength tests. They only recently added this into the study, as they were finding that most of the subjects were very physically weak. They said I was only the 5th person in the study to do this portion. I had to run up and down 4 stairs (they have railings you can hold onto if needed), and they times it. They had me walk and run 10 meters and timed. Timed the length of time it takes to get from lying down to standing without using any aids like tables or chairs to hold onto. Timed on length of time to do a sit up. Interestingly, they were surprised I could do one at all because other subjects couldn't. And then they had a number of exercises/positions that they timed how long I could hold the position for. I could do them all, but could feel the muscles starting to shake by the end.  Also did some balance tests (not so great at those! Once my eyes were closed I started to tip!) They started to do a number of strength tests, but the one piece of equipment had the battery die, and I was too strong for the tech. We are going to redo these strength tests tomorrow to get more accurate readings.

I then left and went back to Safra house with my husband Mike and daughter Natasha. We ordered in some pizza, and then I walked back across the road around 8pm. Interestingly, as I was walking, there were 6 deer that pranced across the road in front of me! Apparently there are about 35 deer that live on the NIH campus.

Slept for the night, fasting after midnight in order to prep for a 24 hour chamber study that measures exact metabolic rate. Most people opt out of this part of the study, but I think that this is one of the more interesting facets, and am interested in finding out the results. The chamber is sealed, and is basically a bedroom, with TV, computer, treadmill, chair, bed, and washroom facilities. There is a small window facing outside, and a window that faces the nursing desk. Food comes in through a window. They open on one side, seal their side, and then you can open your side to take out the food or vice versa.

Tomorrow I do a body composition in a bodpod machine, and a dexa scan to measure bone density. I will finish the strength testing, have more bloodwork, get a hepatitis A shot, and meet with the geneticist for final results. It looks like I will come back in a couple of months for a bit more testing, and I will have my family doctor give me the second hep A shot. I'm interested to see what the final results will say.

For now, I have 21 more hours in this room. :)

Friday, April 19, 2013

National Organ & Tissue Donor Awareness Week: Meet Alexa!

April 21- 27, 2013 is Canada's National Organ & Tissue Donor Awareness Week.

We have our own experiences with being on the transplant list in 2011, but right now, in light of Donor Awareness Week, I want to introduce you to Alexa!

Alexa (age 4)  has Citrullinemia and is waiting for a liver transplant.
Alexa is 4 years old.  Isn't she adorable!?  She is on the liver transplant waiting list here in Ontario.  Similar to OTC (what my boys were affected with, and I am a carrier of), she has a urea cycle disorder called Citrullinemia. This means that her family needs to ensure she eats a very low protein diet and take specialized medicines and amino acids to ensure that ammonia toxicity does not happen.

Ammonia toxicity kills brain cells, and can result in catastrophic neurological damage.  It can also result in death, but we aren't talking about that right now!

For Alexa, getting a new liver would mean no longer having to worry about normal childhood illnesses and viruses such as colds, flu, chicken pox, etc causing permanent damage to her brain.  She has had a number of hospitalizations needing specialized medicines to bring down the ammonia levels when she contracts what would normally be mild illnesses for children.

Alexa is a Toronto Maple Leafs fan!

Alexa is from Toronto (see her Maple Leafs jersey!) I met her mom Shanna for dinner one night in the fall when I was visiting Toronto.  We talked the night away about transplant issues, urea cycle disorders, and low protein diets among other things!

In Ontario, you can sign up to be a donor by registering with Be A  Use my link here to register to support Alexa and in memory of our son Kyle.

To learn more about Alexa and her family, you can go to their blog:

Friday, April 5, 2013

Education Options We've Been Offered (Gifted vs French Immersion)

A couple of weeks ago, I received a phone call from the principal of another school in our area, wondering if our daughter might be interested in attending there next year.  She met the criteria for the gifted program, and she has a choice of staying within her own school and having a slightly adapted program, or switching schools into the gifted program.

The fact that she met the criteria was not a surprise to us.  Every teacher she has had over the years has commented that she probably fits into the "gifted" category.  My husband was in gifted as a kid, and I was always one point away from meeting the criteria, but instead, I skipped two grades (grade 1 and grade 8).

The gifted program in our city is very small.  It is currently one classroom of students ranging from grade 5 to grade 8.  They are sometimes broken up into grade level (5/6 vs 7/8), and for that reason there are 1.5 teachers designated towards this class. 

We went on a tour earlier this week, and I was blown away.  It seems fabulous.  Heck, *I* want to be in the class!  The 5/6 portion of the class only has 6 children.  One in grade 5 and the rest are in grade 6.  They were working on a Carmen San Diego type exercise. (None of the kids know Carmen San Diego, but the teacher being about my age knew that I would understand the reference.)

With world maps, atlases, and Netbooks on hand, the kids were working in pairs to figure out where they were going.  They had a list of about 15 countries, had to figure out where the countries were, then figure out what currency the country used, and then they had to convert a certain amount of the currency into Canadian dollars.  The teacher was helping one of the kids in writing down the answers for his work.

The class has some kids who are strictly "gifted", and others who meet the dual diagnosis of gifted and learning disabled.  You can be gifted in some areas, but learning disabled in others, which many people don't realize.

Our daughter joined one of the groups for about an hour working on this assignment.  She loved the class, and has decided she would like to switch to this school.

The one downfall to switching is that she will have to leave the French Immersion system as this program is only offered in English.  However, since my husband speaks French he can teach her.  Busing is provided, which is great, because if it wasn't offered we wouldn't be able to realistically get her to and from this school.

She could start at anytime, but I think we've decided to have her finish her year out, and have her start in September.