Anyways, I posted on Facebook that yesterday was hopeful. It wasn't - at least, I didn't really think it was. That post was more for the masses who I don't want worrying about me and I don't need writing on my wall "Is there anything I can do?". Because there isn't anything anyone can do, and that's what makes this entire situation so goddamn frustrating and sad.
So, Charlie had his echo yesterday morning and was a trooper throughout. They got all the pictures they needed. After, he needed to eat, which for anyone who knows the situation is not an easy or short process. After eating we met with the cardiologist (we have now been at Sick Kids for 3 hours or so, running on 5 hours of sleep) who told us that Charlie's heart is still 'really bad' (direct quote!) and that they haven't seen any improvement yet. I put 'yet' because they told us not to expect any improvement yesterday - it takes longer then that usually for the drugs to work. But, hope springs eternal, somehow, and we were hoping for miraculous results. The meeting with the cardiologist was a downer.
After, we met with the genetic counsellor, who explained the genetic testing process to us and got us to sign off on sending away Charlie's sample. Charlie's sample goes to Harvard (!) where 46 of his genes will be tested. The counsellor said that she does get quite a few positive results back, so that's sort of a good thing (I always think knowing is better then not knowing). If it comes back positive, then Matt and I have to get tested to see if we are carriers, which impacts future children. If it's negative, then it's called 'idiopathic' DCM, and that leaves everything up in the air. Either way, the results aren't something to celebrate - just more information to arm ourselves with. We'll her back in 3 months or so.
Lastly, we met with our dietician. We could have use a 'rah rah' sort of meeting, but instead it just seemed very blah - yes, he's gaining weight, he's kind of catching up, oh good he's taking some cereal - again, it seemed there was nothing to celebrate yesterday. And we need celebrations on a daily basis.
We also went to see friends of ours yesterday who just had a baby. It was tough, but in the vein of keeping this short (yeah right!) I'll save that for another day. The new baby is a little peanut and we just loved her.
Today's song is 'Yesterday' by the Beatles, for obvious reasons.
**Update: Today's celebration is that Charlie just ate 1.5tsp of rice cereal, seemed to want it (kind of) and has kept it down (so far). Small victories!**
Yesterday - The Beatles
Yesterday,
All my troubles seemed so far away,
Now it looks as though they're here to stay,
Oh, I believe in yesterday.
Suddenly,
I'm not half the man I used to be,
There's a shadow hanging over me,
Oh, yesterday came suddenly.
Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.
Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.
Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.
Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.
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