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SherryMH's blog: "Hello?"

created on 03/18/2009  |  http://fubar.com/hello/b286011

Is This Thing On?

Hello there :)

 

It's been awhile.  Things got hectic in real life.  Things are getting on track now.

 

Lots has happened since we last saw each other.  Good and bad.

 

Blake's DNA test to determine which mutation of cystic fibrosis he has took place.  Bad news: the most severe. Good news: the most common so it's researched more.

Bad news: it will be two years before a new drug will be released to the public for CF treatment.

Good news: Blake will start blood work and  testing in 6 months so that he will be ready to be one of the first CFers to be prescribed the new drug. 

 

The new drug will improve some lung functionality which should increase life span for CF patients.  It's a step in the right direction.

 

He is doing well now.  The thing about CF is that to most people the kids don't look very sick. The common comment a CFer gets is "you don't look that sick". It takes over $10,000 a month in drugs and treatments, various hospital stays a year, and constant prodding of a 3 year old to get them to eat for them to look "that good".  Without it he would die. That's the horrible truth of the disease. He wouldn't make it to school age.  We have been lucky so far and avoided hospital stays a few times. 

 

Little man is excited about Christmas and YES...Nana bought tons for both Blake and Khloe. :D

 

Khloe is walking everywhere now.  She actually walks better backwards! Go figure.  Haha!  She still looks like me.  Poor baby.  LOL!

 

I am waiting for it to warm up some so that Blake and I can go on our "date" to see Yogi Bear 3D!  It's a little too cold to get him out much and there's a new strand of flu going around he doesn't need.  Not to mention cases of whooping cough.

 

That is all....for now :D

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