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.

Step Forward for Naythan

Naythan has always had a hard time taking medications. We never thought we would get to the point we could get him to take his medications willingly. He now takes his Ultrase, ADEKs, Zantac and Scandishake willingly. He even tells me that he hasn't gotten them yet. We've made a chart to track when he gets them, so I know and his dad knows when he gets them, how much, and when. Our hardest problem has been his Nebulizer and The Vest. Today we're going to try getting him to take his Nebulizer for his Pulmozyne again. Then the next challenge will be The Vest. He's been scared to death of it. He hopefully will have the support of his sister and be able to do it!

Intro To Naythan

Naythan is my handsome little man. He's 4 now. He has Cystic Fibrosis. He has many daily battles that we overcome and he is stronger for them. Right now, his biggest battle is putting on weight. He's also working on doing all of his medications. Right now he has 5 different medications and 1 Chest Therapy. He takes Pulmozyne, which is an inhaled steroid once a day. He takes Ultrase, which are enzymes with all his food, which is 3 before each meal or snack at the moment. He takes ADEKs, these are vitamins that the he doesn't absorb the same way we do. He's on Zantac, this helps his enzymes to work better. He takes Scandishakes, which are a powder that is mixed with milk to create a shake of sorts that have over 600 calories for him. We've been fighting to get his weight up higher. He also does Chest Physical Therapy. This is done with a machine called The Vest. It helps to loosen the mucus in his lungs to help him breathe easier. He's about 37lbs now and needs to be at least 10lbs more at the moment.