Trying to blow pfts for the first time!
Making a "funny" face before pfts!What a looonnnggg day. Zoe had to be at CF clinic at 10:30, then ENT at 2:30. CF clinic visit: weight did NOT increase at all. Not one ounce. She is exactly the same as she was last July. We feed her the highest calorie/fat diet possible. With the exception of the supplemental drinks that would be awesome IF she would drink ANY of them. But of course, she doesn't like any of them. Her nutritionist said today, "Well, you are already pulling all my tricks....let's brainstorm...". So her and Zoe's doc talked and came up with a couple of things to 'try'.
We are switching her Zantac to Prevacid. Sometimes one works better/different than the other as far as working with the enzymes to utilize the fats/calories better. We are also adding 500 mg. DHA. They are scheduling her a follow-up in 6 weeks with CF clinic and G.I..
She also did pft's for the very FIRST time today! It was quite funny! She didn't get the having to push your breath out for a full 3 seconds down very well. Even with her only pushing out to 1 1/2 seconds, they were able to get a prelim. # of FEV1 = 102. They said they won't use her numbers in her records until she is 'good' at the technique.
ENT appt. went great! Her nose looks great! So we don't have to go back to ENT for 3 months.
So, that was our day, I'm tiried, going to go cuddle up in bed and watch a funny movie, need to laugh.
Hi Guys,
ReplyDeleteCF Mom Christie from Maine. When Trevor, our 9 yr old with CF, had trouble gaining weight our doc (who has been doing lungs for 33 years) had him drink a glass of whole milk with Ovaltine every night with dinner. I'm not sure if there was any trickery involved but low and behold, he's now a tank (borderling overweight BMI) and giant. Can't hurt to try, maybe there's some magic in Ovaltine...?
Good luck and stay the course,
Christie Salema
teamtrevor.org
Wow, PFTs for the first time! I'm always curious about what that will be like. The silly picture is adorable! I know it's so disconcerting when we do everything we possibly can to get calories on our little ones and nothing seems to happen! I hope these changes will be what Zoe needs!
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