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.

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.

NAYTHAN'S ENEMY IS CYSTIC FIBROSIS...MINE IS A BAD CLINIC....WHAT IS YOURS?!

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.

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.

Overnight Trip

Well, our overnight trip was a success. He slept well for mama and papa. I got no phone calls in the middle of the night. They did give him all his medicines. Maybe now they are starting to see what I meant by it needs to be done. So far so good. Unfortunately, they were home by 10am. Oh, well. I had some alone time and it's time for our routines to get back together. I'm off to check meds for this morning.

Medicines

Today Naythan is doing most of his medicines very well. I'm tired and feeling sick. I need to keep up with the meds but he's so just active some days. He's going for an over night stay with the grandparents. I've fought tooth and nail for them to understand that his meds can't be an oops I forgot moment. He needs them when they are due. I'm sending a list of what needs to be given when. Hopefully they'll stick to it! I'll post pics of it later!

Find a CURE for CF

http://www.youtube.com/watch?v=nGAv2cam7oY

Watch this and you'll see what a lot of us deal with as parents or as children/adults and CF.

Today's Proud Moment

Today's Proud Moment: After dinner tonight, Naythan got up from playing. He came over to me and said, "Mom it's time to do my car." I took out his nebulizer, put it together, and he did his breathing treatment. Showing off to everyone how good he does. He was so proud he did it all on his own. He takes breaks if he needs to. He turns it on, does the whole treatment and is amazing. After we were all done, he got right back up and went back to play. Just like he does it every day. He's getting so much older right before my eyes.

Naythan's New Nebulizer

Naythan has a new nebulizer. I found out that they made ones in the shape of a car. I got a cool yellow one for him. They do make it in pink too! He's actually doing his Pulmozyne on his own now. He controls it all and does it on a regular basis. I'm so happy and I've attached pictures of what it looks like so you can all get a chance to see it, and maybe get one for your little CFer.

Naythan and the Doctor

Naythan went to the doctor on Thursday, we're having to redo his lead test. He tested a little high and they want to make sure it's correct before we figure out what's causing it. Other than that, we did a height and weight on him too. WE GAINED 2 WHOLE POUNDS! That's a big thing for him. He is now 39 lbs and 40 1/2 inches tall. He's only 4 inches shorter than Lita, his 6 yr old sister. We're doing amazing now! If only we can gain about another 6 lbs.