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Looking Up
One of my favourite people to quote is Oscar Wilde. Fittingly, my favourite quote from Oscar Wilde is this: We are all in the gutter, but some of us are looking at the stars. From time to time, readers of this blog, or friends of mine will say to me, I’m amazed at your strength and how you can remain a positive person despite what you are going through. I do consider it a strength to be able to remain positive through such an awful situation, but I am reminded everyday by Pepper’s smile, why it is important to do so....
read moreIndependent Study Unit
ISU (Independent Study Unit – sometimes also called ISP or Independent Study Project) just typing those words gave me the heebie jeebies. Remember those? You went to the library (what’s a library?) to research (sometimes, research meant meeting friends just to goof off). You opened encyclopaedias (what on earth is an encyclopaedia?) to consult the EXPERT on your intended subject. Then you spent countless hours at night crafting your research into words so that you could present all this to a teacher for grading. Welcome to our...
read moreUsing the Force
Don’t know about you, but we managed to stay relatively dry for Halloween. Yoda here went around to the neighbours secured in Daddy’s arms while her bodyguard Bumblebee (of the Transformers variety) kept in step. Our seizure count is now at 143 (approximately). We are now approximating her seizure count because as we have discovered this week, Pepper has been very quietly sneaking in a few seizures at night time. These are the scary seizures that keep me up at night. The ones that would pass unnoticed if we had not been physically holding...
read moreWelcome Back
Since we left you, Pepper has had three more seizures. Our count now sits at 134. Thankfully, none of these seizures have been at daycare, and all three were short in length. We suspect that getting these standard daycare colds is not helping matters. I have faith that eventually she will laugh these germs off. Hopefully. I am happy to report however, that she is getting a lot of love and cuddles from her teachers at daycare. We are constantly being told that she is having a great day, is sleeping well for her naps, eating well at meal...
read moreEmbracing life
To say that it has been a stressful week would be the ultimate understatement. It’s been rough. Pepper’s birthday came and went with small fanfare. We celebrated together with our families as she fell asleep in her highchair, too sick to worry about the goings-on of her older rowdy cousins. She is now one year old, and one bad cold virus wiser. Happy Birthday to our beautiful Peanut. Monday was my first day back at work, which was ok for me since daddy stayed home with our sick little trooper. She was still feverish and not entirely herself,...
read moreGiving thanks
Cuong and I are thankful for many things in our lives. Today we are thankful for the gift bestowed upon us one year ago to the date. Happy Birthday Pepper!! Yes, the Peanut is a year old today. She spent the day checking out her daycare all by herself. She did really well. Mom, not so much. I went home and cried. Then I bit my nails. Then I harassed the director of the daycare for updates. Sigh. So hard to let go. How has she been doing since my last update? Well, Thanksgiving came and went with a minor cluster. This one involved a fever...
read moreHiccups
You know, normally I like to remain a positive person. It helps me get through a lot of the pain. Some days, that’s just not possible. Today was one of those days. Rotten, stinking, good for nothing day. Phooey. Today, we went through another cluster. It started last night at around 9 pm, took us through the night and up to just half hour ago. It’s not over until we have at least a good 24 hours. Our seizure count is now up to 121. So many stressful things piling on top of each other right now. So many doubts, so many questions. Mix that up...
read moreAt home for a rest
In the beginning, we felt so powerless by Pepper’s clusters. We would wait until she had two seizures within an hour of each other and then head over to the hospital emergency department in a panic. Those days were frightening. We would end up spending three or four days in the hospital, watching powerlessly as she went through the torture of being poked and prodded for a vein (her chubbiness makes it next to impossible for the nurses and lab techs to find a vein). Inevitably, she would be hooked up to an IV line so that easy access for a...
read moreSeizures – 101
Never thought I would be attending this class… So here we are. We have had a full 72 hours seizure free. And just when I thought we were in the clear, the afternoon happened. This afternoon, while I was attempting the ritual of putting Pepper down for her nap, she had a seizure. This was disappointing, as I thought we might have turned a corner. Disappointing, but not surprising. That’s just the way it is. Recently, people have been asking me some questions about her diagnosis, and outlook. To answer these questions, I will spew what...
read moreSmall Breaks
It’s been about 24 hours since Pepper’s last seizure. Every time we have these little breaks I take a moment to enjoy my family. Pepper absolutely loves her brother. He’s the only one that can truly make her laugh. He definitely drives us crazy at times when we find ourselves swimming in his toy car collection but I know I miss it when Steph and I tend to Pepper. We are lucky we have the support of family and friends. They’ve watched our son while we’ve been in the hospital and have sometimes taken him for a day or two just so we can have a...
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