Sunday, April 19, 2009

Not Charlie Too!

It's been a tiring week and I'm not sure why... I think the stress of all we've been through and what lies ahead may be getting to us.

Had a scare on Monday, when Hank's brother, 5-year old Charlie woke up with a small rash on the left side of his face. Didn't think much of it, but when I picked him up from school, the rash was a lot bigger!

Flash back to when Hank was 5... red rash on the left side of his face...the start of his symptoms... couldn't be happening to Charlie too, could it?! I took him to the doctor who thought it was probably a bug bite. "Of course it is," I thought to myself..."It can't be Parry Romberg's...that would be too much!" And as the doctor was telling me to just put cold compresses on his face, I found myself blurting out (all in one breath), "Charlie's brother has Parry Romberg Syndrome and it started when he was 5 and the first symptom was a rash on the left side of his face that looked JUST LIKE THIS!" The doctor's eyes got big as she gaped at me. And finally she said, "well, I can see why you would be very concerned...don't worry, we will keep a close eye on this, but I really do think it is just a bug bite." I wonder how familiar she is with Parry Romberg's? Regardless, she was right, for the redness was gone the next day. Whew! But I will still be staring at Charlie's cheek for a long time...

We are working on opening a trust account at our local bank for Hank. We thought it would be easy, just go down and open one. Not so. Jeff talked to a lawyer who said he would do it for $1,500. I'm thinking that if we had $1,500, we probably wouldn't need a trust account! But, lucky for us, I have a friend who is an attorney who will do it for free. So keep your fingers crossed that we get this done this week and then can move forward with fundraisers and donations!

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