About Me

Oregon
Why Double Trouble? Well I'm the Mom of two boys. Two boys that are not only 14 months apart but they both have Cystic Fibrosis. So not only are they crazy guys they are two very special guys that will have and share a special relationship with each other that I will never understand. But as their Mom and #1 fan I would like to share with everyone what a crazy day is like with these two. From watching Curious George, Thomas the Train, Taking enzymes, Coloring, Doing treatments, Fighting, Weight Gain, Weight Loss and Brotherly Love. I'm also committed to do my very BEST in helping everyone know what CF is really all about.

Thursday, November 11, 2010

Stuff you just SHOULDN'T have to worry about!!!

It's hard not to look at these two and not smile.... It's hard not to look at these two a wonder what they are thinking about..... It's even harder to look at these two and know that they are just going about their day and that they have no clue when I look at them I want nothing more to be able to look at them and not worry about stuff I SHOULDN'T have to worry about!!!

 So Carson had a clinic appointment last week and I just soooo hate going it's like having to go to the principles office and knowing that you are going to get in trouble but not knowing quite what for. So some good news is that Carson didn't loose any weight but only gained a couple ounces. And so of course they started talking about that G-Tube again and they knew that I was not having it quite yet. Because as I explained to them is that right now 1. Carson just got off of a antibiotics 2. I feel like I'm working with a 1 year old with Carson on eating and trying new things, when actually I am working with not only that but the TERRIBLE twos. So they are working with me and Carson started taking a appetite stimulant called Periactin ( cyproheptadine ). And so far kind of ok???? Unfortunately Carson is my side effects kid and of course on day two of taking it he had diarrhea and threw up.Well now being on it a week he only did that, that one day. Now I don't know if my mind is playing tricks on me but it seems to have started working... so we shall see.

Brandon has clinic on the 23rd so we shall see what they think about him.... And you see this is what I'm talking about, No parent should dread having to go and see their kids Doctor FEARING that what they have been doing over the past 3 months has been wrong or told that they could have been doing better.
I shouldn't have to worry about how skinny or tall or even how much they are eating at this age. I shouldn't have to plead my case or be made to feel like if I don't make the choose they want me to make that I'm going about things the wrong way. And I sure in the HELL shouldn't have to worry about every signal sniffle, cough, runny nose or anyone else that might be sick that MIGHT have been around the boys. But......that is the hand I have been dealt and I'm up for it. Yes I might bitch and complain once in a while or keep it all in and then wish I had a punching bag that I could beat the crap out of. Because it's hard not to look at my sweet boys and know it's all for a GOOD reason. That this is a fight that I'm willing to kick it's ass any chance I get.
So again.... I CAN NOT look at these two and not smile and I know with all my heart that one day SOON I will NOT have to worry about stuff that I SHOULDN'T have to.
CF= CURE FOUND!!!!

4 comments:

  1. I love that CF should stand for Cure Found! Sending my luv~medina

    ReplyDelete
  2. I have an 80lbs. punching bag if you ever feel the need

    ReplyDelete
  3. I am right there with you my dear!!!

    ReplyDelete