So Brandon had clinic on the 24th of Aug and Carson came along because he needed to get a sputum culture done because he had been on Cipro and had been done with his TOBI for 2 weeks. Brandon also had to get blood labs done. So anyways, everything went good at clinic I did have the Doc listen to Carson because he had been wheezy for a couple of days and it was right around this time of year last year that he was doing the same thing and they had put him on Flow vent and that has seemed to help. Brandon's blood work came back and he's vitamin K and D were low so we started some supplements for that. Carson finally had his own clinic appointment. on the 21st of this month and it went ok, he sounded good and his also had to get blood work done. His culture that they did on the 24th of Aug was clear so the Cipro & TOBI worked. On the other hand he did lose a little weight and for Carson that is not a really good thing because he has never lost weight he has either gained or maintained. So those UGLY words came out of the Doc's mouth...... G-Tube and not just for Carson, Brandon too??? So I don't know I truly believe that when Carson gets a little older he will start eating more. Tomorrow we are seeing the eating specialist and I'm hoping that he can help us, we have seen him a couple time before and Carson has always improved after seeing him.
It is HARD with Carson because he only eats a limited variety of food. And if I try to give him ANYTHING new he won't even try it :( and it brakes my heart because this is just one more thing that CF throws at you. If this was any other kid that was not affected by CF I don't think that it would be a big deal, they would just say " It's just a phase don't worry about it " " He will eat when he's hungry ". Well you just can't do that with CF because when this happens it's FAILURE TO THRIVE!!!! Failure... Failure... that's just what I feel like a FAILURE. I do everything I can to get Carson to eat and when he does we PARTY, and I think we are doing good and then I hear G-Tube. I had to do the NG-Tube for Brandon because he couldn't keep his bottles done until we got his acid reflux under control and that wasn't fun. So I'm hoping that meeting with the eating specialist will help. And I don't even know if this is ever considered when CF is involved but if you could have seen my Husband or myself when we were young we were sticks. My Mom couldn't even donate blood her senior year of high school because she didn't way 100 pounds people thought my sister was anorexic for the longest time because she was sooo thin. So how can you plump up kids that have CF when basically your fighting genes against genes???
So I don't know, I just think that if I can just get Carson to just try something once he would like SO much more, because it has happened before with somethings that he just wouldn't try and I just shoved it in his mouth and he liked it. But it's just getting him to try it, I guess on a little more of a happier note Carson's blood work came back great so that's good.
Well I hope to report more after we have out appointment tomorrow.NIGHT
