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Monday, August 1, 2011

W-Day - 8th July 2011

W-Day is a strange day for me - i know it is the day i will remeber as the day we were told "E has Williams Syndromeyndrome.".  However, by the time this came about we had trawled the internet and knew a little of what we were dealing with.

24th July - that was the day E had his Echocardiogram.  This had come about due to a detected heart murmur and a couple of potential hereditary cardiac issues (that would be my fault).  The paediatrician was becoming increasingly concerned about a number of symptoms - and this was something i was getting worried about.  When he explained that he wanted to undertake some genetic testing to look for an overlying condition which could cause all of them.  At this point, E's Mum (who was stood next to me) burst into tears - thinking back i think i reacted to her crying and hadn't really grasped what was being said until later.

E was back in the hospital the following day for the blood to be taken and various tests and the paediatrician came to see us and explained he was looking for Williams Syndrome.

We were numb - we went home and just collapsed into the sofa, sighing and looking at each other.  E soon kicked us in to line by crying for a bottle - we came to realise E wasn't going to let us wallow in the news - he was being exactly the same baby he had been for 11 weeks, before we took him for his cardiac check up.

Three weeks passed, and we were back at the hospital for weekly obs and we got the impression that something was being prepared - and how right we were!  This was where we were to be told E had Williams Syndrome - and we knew that was what we were going to be told (regardless of how much wishing and hoping i did!).  The wonders of the internet had provided us with 3 weeks to read and compare how the Syndrome could show itself and Ethan.

Have i found peace with ths yet? No.
Do i know anything about the new world i find myself in? No.
Am i ready to learn? Oh yes.

1 comment:

  1. Hi E's dad -- welcome to the world of blogging and of Williams syndrome. :o) Our son was diagnosed with WS almost two years ago (he's 2.5 now) and reading your post brought back the way my husband and I felt when we got the diagnosis. It definitely stings. I wrote a little "Welcome to WS" letter that I wished I would have had back then:

    You might not believe me now, but it gets better. So glad you're willing to learn -- E is blessed to have a dad that loves him so much!