Monday, 17 June 2013

Birthday Fun & More!


If you have not already viewed the album Cynthia Korman did for Emma's birthday, I suggest you do! She did such a wonderful job! Click the above link

Emma's birthday was perfect!  Her and her sister had a fun filled day with lots of friends.  The Brandon Sun came to do an article on Emma, and the cake she received from Icing Smiles Canada. Well Dressed Cakes by Brett made Emma's dream birthday cake, as well as Breanna's cake.  I cannot tell you how much this meant to me.  This is an amazing organization and Brett did an unforgettable job!!  It was a very special day.

Emma started having a rough Spring, seems to every year?  She started off with her heart rate so high, then breaking a fever, then of course, seizures.  Once the fever was down, it seemed to stay away, but the rest remained.  She was given a course of antibiotics, to which changed nothing.

I started brainstorming and thought of allergies/asthma and tried Allegra on her.  This seemed to work well!  A week later, she had greatly improved and we all started sleeping again ;)

We have appointments coming up in Winnipeg soon. (I am not telling Emma as she seems to have other plans every time we have an appointment) This will be our third attempt at getting into the city.  I am hoping to find out if Emma can get testing for KCNQ2.  This is the only one I have come across that makes "sense" to Emma.  As most of you know, Emma doesn't have an underlying cause as to why she has Ohtahara Syndrome.  For the most part, it doesn't matter and will not change her treatment.  The reason I would like to find out the "why", is so I know if it something my kids will carry down to future generations or if it runs in other siblings in my family.

Emma is enrolled in the Boston Children's Hospital research study as well.  Hopefully something may show up there as well!

We are really looking forward to a happy, healthy summer and wish you all the same! XOXO

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