Our old CF Commercial that plays on MCTV. Still working on this years.

Tuesday, October 7, 2008

Daniel Update

For those of you who have been with us for awhile, you have probably been wondering how Daniel is. For those of you who don't know who Daniel is...Daniel is 3 and is the first CF child we have met other than our Lil' Chris.

Daniel's mom is the first CF mom I ever talked to. Our clinic gave us each others phone numbers, b/c we live in the same town. I think Lil' Chris was about 2 months old when we had our first lil' CF mom meeting at my house. We just found talking to each other so easy, b/c others just don't understand sometimes. I thank God that we met, b/c without her, I would probably be a mess and not have confidence in how to raise Lil' Chris. But thanks to her and the stories she has told me, I don't feel alone in how I protect my son so much. You see, at first, I thought everyone would think that I'm just too overprotective of him. But she has made me realize that you have to be for his sake! She taught me not to worry about what others think. I remember her telling me stories like...when someone or her other kids friends comes to her house to play, she asks if they are sick. If they are, she tells them that she is sorry, but they can't be around her son and they can't bring the germs into her house. I love that! In the beginning, I would have been like..."Oh you're sick, well just try not to get Lil' Chris sick." But now, I have the confidence to say "I'm sorry, but we can't afford the germs in our house. A cold to you could be pneumonia to Lil' Chris and all kinds of hospital stays." So I just wanted to say THANK YOU DANIEL'S MOM, FOR BEING A GREAT EXAMPLE OF A GREAT CF MOM, AND FOR TEACHING ME ALL THAT I KNOW, AND FOR ALWAYS BEING THERE FOR ME WHEN I NEED A FRIEND!! YOU'RE THE BEST!!

Here is an update that she left as a comment on one of my last posts. I cut and pasted it, b/c I know not everyone reads the comments. Please pray for Daniel to get over this heavy breathing and cough really soon.

Hi M,I have my ability to comment again. I ended up setting a new password. Daniel is fine. Daniel had a first at clinic last week. He actually wore his mask from the car until we were in the exam room, and put it back on to go back to the car! His appointment went fine. They said his lungs sounded clear. I was surprised because he was breathing heavy and had such a cough. They put him on an antibiotic, increased his albuterol to 4 times a day, and we will find out if he cultured anything on Monday. The cough is getting much better, but he still sounds like he is running around when he is sitting still. I was thinking this morning that one thing I hate about CF is how it has eroded my confidence as a Mom. I always wonder if I am being vigilant enough, or am I worrying too much when he is fine. With my other kids, I feel confident, with Daniel I am constantly second guessing myself. How is Lil Chris? Any great plans for the weekend? Not much here. I am really looking forward to Tuesday! Daniel’s Mom

You're doing a great job with Daniel! Keep up the good work! That's great that he wore the mask the whole time!

I know what you mean about losing confidence when Daniel gets sick. I do the same thing with Lil' Chris, but at least we are here for each other and now we know more CF moms to help give us great advice.

1 comment:

Alicia said...

I know what you guys mean about losing confidence. I'm the same with Sam. There are times she sounds horrific, and then a dr says "her lungs sound clear", and this last illness she sounded rough (enough that I knew she needed to get to the dr), but not "we may have to admit her" rough. It totally throws me for a loop!