Taylor is doing great with her weight. She's 1 oz. shy of 15 #'s! Keep it up girl!!! We just might get into those 6-9 months clothes while she's actually 6-9 months old! Normally, a petite, little girl is not a bad thing, but with CF, the more "meat" the better! It improves lung function (in CF patients) and gives a little "cushion" during an illness that may cause her to lose weight, due to vomiting, diarrhea or just not feeling well enough to eat. So, unlike most households, we encourage high calorie and even high fat diets. The high fat issues does need to be balanced with nutrition and some fats are better than others, but the goal is to keep them at least at 50% or higher on the growth chart. She's not there yet, by far, but we're working on it!
She does have a cold, probably viral, and is quite congested again. The Dr. added Pulmicort to her breathing treatment regimen. They said to discontinue the Qvar (steroids). That's a good thing since I never gave it to her. I just couldn't bring myself to put her on steroids. It can cause mood swings, can stunt growth and have other side affects. I decided to hold out and see what they said at this appt. This Dr. didn't even mention the steroids. The CF nurse coordinator called me after we got home to tell me they overlooked the Qvar and to discontinue it. Yeah!!!
I don't recommend being your own Dr.! (haha), but I also know that, especially with CF, dr.'s are aggressive and quick to throw medications at each problem. You just have to go with your gut because the facts are that this aggressive method has improved the lives of many with CF and have even added years to their lives. But, you still have to be smart about it. (I'm not suggesting the dr.'s aren't smart, but I am the 24/7 caregiver of my children and I know better than anyone how they are doing and how they respond to things and I feel comfortable in my ability--through observation and prayer--to decide what's best for them.) I might make mistakes, but hopefully, not enough to make a big difference and hopefully, I learn from them and know what to do next time!
Lincoln's doing great too! He doesn't have a cold and he's just 2.5 oz. shy of 30#'s. He's well above the 50% mark on the growth chart. On paper, (except for the one that shows the lab results are positive for CF), you wouldn't know he had CF. This is no guarantee that he will do any better than anyone else in 10 yrs, 20 yrs, or whatever, BUT, it's great for now and we Praise the Lord that he's so healthy right now.
Jackson's check up is next week. He seems to be doing pretty well too. I don't think he'll have any issues to worry about. He was supposed to have a 24 hr. EEG, but the neurology clinic never scheduled it and I think at this point we'll wait to see if he has a 3rd seizure. Because I think his trigger is sleep deprivation, we're going to just try to make sure he's in bed at a decent time all the time. That said, last night we got home around 11:30pm. BUT, he was fine this morning.
Carter is expecting his new glasses any day now. The eye that they are working on correcting has improved and his old glasses were too strong! Yeah! He only has to patch his other eye for a couple hours a day on the weekends. His dr. is very conscientious about him having to patch at school and tries to avoid it if possible. That's so wonderful! And, thankfully, he continues to improve and can do it that way. He's been in Kindergarten for a month now and is doing well.