So this blog is becoming more of an update and how we are doing blog than a healthy blog. LOL! Leave it to me, I guess i got side tracked with the cosmetic surgery and all. Anyways I have had alot come up in the last 24hrs. I received an email from our research doctor asking me to help him in finding more families with Danon's. So I put my brain to work last night till about 11pm and came up with an idea of a flier. I have made it up and put some very good information on it, my plan is to have Stanford pass the flier out to the danon disease families that are seen there at clinic and have them contact me or Dr. Taylor (our research doctor in Colorado) to join the research group. Meanwhile, I will post information on face book on the Danon Disease page that I have had set up there. I really hope this helps. I am involved with alot of different websites on face book for CHD babies, and Transplant communities etc. My hope is to post to each of these sites and try to see if there are more families out there. I am starting to wonder if this is my calling. I want to do something once Mason starts school but this would be all volunteer work...I know I wouldn't be paid but at the same time I would be paid by getting information about this disease to Dr. Taylor and in return having him do his magic and help find a way to slow down the disease and/or a cure for myself, the boys and my entire family. That in itself is worth no money to me. We will see what happens.
So I have a flier I am posting in different places and I hope to find more families with this disease.
Today Liam's opening ceremonies were CANCELED again. Can you believe that. It's nuts. he is so upset and I don't blame him. They said they will try to do it tomorrow and reschedule his game but wow really, your going to do that to all those kids. They don't want the fields to get messed up...it's like hello it's a baseball field thats what they do they play on it and mess it up. Guess thats life. So Chris is still sleeping, he needs it though, he has work on Monday and is/has been so tired and wearing himself down. I will get dressed here soon and take the boy's on a bike ride. It is a beautiful day here. I have my doctor appt on Monday and I know I will be in this strap another week if not more. This dumb implant just won't go down. All my g/f's with implants are telling me that they will drop on their own and I have read that too online but it's just scary to see it and not know if they truly will drop. Time is what I need i mean ghesh it hasn't even been 2weeks yet! haha!
Well this is a quick journal entry for today. Quote for the day "This is my house, you are not welcome here, please leave you are not wanted" IT WORKED well that quote worked thus far....yay, thanks babe even if it was said in your mind.
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