A Everyday schedule vs A CF schedule

You know.. I knew when I was pregnant that I was going to have to change my daily schedule when the baby came. I knew things weren't going to be the same,  I knew that I was going to have to learn the different stages babies went through. I even knew EVERYTHING that I had read about on taking care of a baby didn't apply to us after we first heard the words Cystic Fibrosis. Or that most of it didn't apply to us, because a little still would. Now that the boys are older it has become a little more difficult. You see when the boys were babies it was tummy medicine (acid reflux) enzymes, bottles, diapers, and treatments and then the regular stuff bathing, playing.... I think that's all babies do? I don't remember ( hehehe ). Even when we started introducing foods it wasn't that bad, but now with the toddler thing coming into play with trying to mix everyday stuff like nap time, breakfast, lunch, dinner, brushing teeth, potty training, (ha ha) and even a descent bed time. Then trying to add in ALL of the CF stuff from enzymes, treatments making sure they eat high calorie stuff. Because you know I looked at the back of things to see how many calories, fats etc... were in things but it was to see how low all that stuff was and I still do that for my husband and myself but now I have two carts when I shop low cal & high cal.  And if their on any antibiotics and heaven for bid the antibiotic not be able to be given within so much time in between milk or vitamins. I don't even want to begin to think about how much harder it is going to be once their in school!!

 Right now I'm pulling my hair out and it could very well be because Carson is smack dab in the middle of his terrible two's and Brandon just thinks its fun to do whatever brother is doing. I don't???? I just hope I'm doing everything I can do to make sure they are going to be well rounded boys because I also know that every kid needs stauncher and discipline. It's HARD when your two year old throws a fit because he doesn't want to eat whatever you have made (let alone try it) because you might just say then " Fine then don't eat it but your not going to get anything else ". Well in their case I feel you can't do that because one you just gave them enzymes that cost money and if they don't get enough calories for the enzymes they poop and then they loose calories. So then it's a double edge sword because then offering them something that they will eat which is normally something that yes they can have like Cheetos or a Pop tart but when your trying to get them to try NEW stuff that isn't always snacky stuff but high calorie food... food.

So right now I'm stuck because there has to be a way to be a good parent and a good CF parent all at the same time... right???

I just wish I could figure it out because it's killing me trying to juggle it all and have a so called NORMAL life and raise good strong, healthy boys. Yet then I have the reality of the CF life hit me a crossed the face when one of them looses some weight or you feel like a bad mom when they won't eat what you have made and so you need to give them what we would call junk food, just to make sure they do eat something. Then feeling like you just gave in to them throwing a fit. Or just wondering if the way your trying to mix a everyday schedule with a CF schedule is the right way for your kids?

 I guess it's just a VERY fine line I'm going to have to learn how to walk.

We shall see????

So we went to see Steve the Eating Specialist on Thursday and we have seen him a couple of times with both Carson & Brandon. And no matter what I always walk out either with one of the boys eating good with him or I learn something new. Well this time both happened, Carson ate some stuff I didn't think he would and I learned a couple of things to look for when I am feeding Carson. Now as for Brandon..... he is doing fine with the eating I think he just plays off of Carson sometimes. But I guess my BIGGEST thing that happened was after we got home. The boys were hungry for lunch so I tried something that Steve told me to try with Cup of Noodles. So I made them took the noodles out and patted them dry, then put some on Carson's tray and immediately he said NO. So I sat down with him and started to eat them acting like I was a snake and the noodle was my tongue and just having FUN with the food. So he started playing with them and...... HE PUT ONE IN HIS MOUTH!!! and said " Oh yummy " ok so I didn't want to get to exited and and scare him. So I just said " Good job Buddy " gave him a high five and what do you know the little sticker ate two more. Now I know he only ate three noodles but I tried them and that's been our problem all along.

 Now three days later I think he is getting my head cold that I'm just getting over and he is not that interested in eating very much :( And to think I tried EVERYTHING to keep my germs away and off of things. But I guess it's bound to happen and I can't put them in a bubble like they tell me at the CF clinic. But you know it's one thing to try whatever when their out in public because there is only so much you can do. But when it's YOU that gives them something and your trying so hard to keep your self healthy, you just feel defeated. Now if I can only keep Brandon form getting it and then it coming around full circle again.

I'm just hoping that I can keep making and thinking of new ideas for Carson to eat. Like tonight he wanted ice cream and so he helped me make a milkshake. And not any old milkshake a GREEN milkshake, thank goodness for food coloring. So we shall see what come of all this new trying food thing for Carson we go see Steve again I think on the 14th and then CF clinic on Nov. 2nd? So I hope to up date soon with how things are going and PLEASE anyone who reads this and has any suggestions on different ideas or recipes for CFers feel free I'm always up for new things.

If it's not one thing it's another

 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