Monday, August 24, 2009

New Day, New Stuff

My little boy became a big boy today. He learned how to swallow pills without having to open them. I'm so excited. With that being said, he's also getting sick. I'm so tired with all of this. I hope it just passes without having to get more meds.

Thursday, August 13, 2009

Know your Enemy Day!

Today is know your enemy day. Today we know Naythan's enemy and we can honestly say it's a fair fight. Naythan's enemy is Cystic Fibrosis and we have all the tools we need to fight a fair fight. He will survive a longer life than those in the past. He will be a happy healthy child.

I lack one tool to keep this going and make sure he lives a happy life. A good clinic. I'm so upset with the clinic we have now. They are what is considered a Re-active instead of a Pro-active clinic. A re-active clinic only does things when something happens. Like if he gets sick. I want a Pro-active clinic. A clinic who tries to do things to prevent him from getting sick, or at least jumps on it right away if it does happen. This leaves me in a bind. My clinic hasn't even tested him for his genetic mutations. I'm so angry I could spit venom. Well, today isn't my day to complain, it's my day to battle.


Tuesday, August 11, 2009

The "65 Roses" Story (Cystic Fibrosis)

I love this story and thought I would share it with all those who have yet to hear it! Enjoy...

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after she learned that her three little boys had cystic fibrosis. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down his mother's cheeks as she stammered, "Yes Richard, I am working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become the symbol of the Cystic Fibrosis Foundation.

Wednesday, August 5, 2009

CF Clinic Call in the A.M.

Only doing a quick message here to let you all know I'll be calling the clinic in the morning. Naythan hasn't been feeling really himself since Sunday at the big RailRoad picnic. So I'm going to call and see what we need too do. Probably get a culture done. I don't want a sick baby. I just don't want him to get too far gone before we catch it either. I'll let you know what clinic says in the morning.