So, today I had a meeting at the Alberta Children's Hospital with the staff from the Hemophilia Treatment Centre there. The hospital was just beautiful and had so many facilities and play areas. As I walked through the halls of the hospital I couldn't help but think of the year my mom and I spend in the Janeway Children's Hospital in Newfoundland. My mom and I tried to make the best of it we would take late night wheel chair rides around the hospital, we watched countless movies, made crafts but it was a very difficult time for both of us. By the time I made it to the Hemophilia Clinic I was in tears. It broke my heart to think of what I put my mom through and it hurt to see such cute little children in wheelchairs and hooked up to IV's, it was really hard to see. Looking back on all those hard times as a child I have no idea how I got through it, I know my mom and dad were a huge help and I also had a lot of prayers. Kids are just so cute and sweet I don't think they should get sick, illness should be for adults only. Now that I'm all grown up I do feel it's important to help other children who may be in the same position I was. The meeting with the staff went really well. We all want the same thing, to make life easier for people with Hemophilia. We came up with a lot of ideas and I look forward to working them! Another thing I am looking forward to is the Hemophilia Society Christmas Party this Saturday, we've spent a lot of time planning it and I hope everyone has a really good time.
Thursday, November 24, 2011
So, today I went to the Hemophilia Clinic to get my hip looked at. It's been causing me some pain over the past few days and so I thought I would get it looked at just to make sure. They told me to rest it and ice it and if it's not better by tomorrow they recommended I come back and get treated with Octaplas. It's a fairly new product it is essentially a detergent treated plasma and it supposedly reduces the risk of transmitting blood borne pathogens and reduces the risk of reactions. Those are obviously huge improvements for me but again I've never taken it before so I'm still not sure how it will affect me.
You see I've been taking Fresh Frozen Plasma for 28 years so the thought of changing to something new all of a sudden is scary. Another down side is that its the same volume so it will still take a long time to infuse. So not only to I have the joy of hip pain but I also have the joy of having to read this 30 page article about Octaplas!
Sunday, November 20, 2011
So, my mom was visiting me for the past ten days. It was the such a wonderful trip and I am still finding it hard to get back into the swing of things. I know a lot of people love their mothers but I just adore my mom. She is one of the kindest, sweetest, funniest people I have ever met in my life. My mom is the type of person that would do anything for me. Being the mother of a Hemophiliac puts you in a special class she not only had to deal with all the regular child raising problems but she had figure out how to deal with a severe factor 5 Hemophilia with little information from doctors, no hemophilia treatment centre and no hemophilia society. As I've mentioned before I have no family history what so ever of Hemophilia or any bleeding problems what so ever. So when I came along know it came as quite a shock to both of my parents. But instead of being scared mom was quite fearless when it came to raising me. She showered me with love and attention, she let me roller skate, skip and bike ride. She made me feel like a normal little girl and because of it I think it allowed me to not be afraid of my condition. After my mom leaves I always feel sad for days, she is my best friend and I feel very guilty for living so far away from her, I'm trying to convince her to move to Calgary and I am hoping to visit her in February for a week or two. Our time together always seems too short but at the end of the day I am blessed to have such a wonderful momma and that's what I need to remember.