I rescheduled Trevor's CF Clinic visit that was originally scheduled for November 1st. Now he is scheduled for his 3 month check up on November 15th. He is a little worried about his weight. I think it stresses him because he knows they will weigh him when we go for the check up. After 9 years of check ups.....he is acutely aware of everything they do and everything they expect. With that being said......just because they expect it, doesn't mean it is possible. He tells me that he is trying so hard to gain weight....I have to choke back the tears and keep a smile on my face. He is trying! He is trying so hard, but the grim reality is that CF is a battle. He has to keep on fighting against this stupid disease every single day. This disease that makes it impossible for him to absorb food like any other normal 9 year old boy. That keeps him from digesting his food properly which sometimes leads to extremely painful stomach aches. I just tell him that he is in control, and he has to keep on trying and fighting this everyday. What is crazy is that Trevor is one of the lucky ones with CF.....if anyone could be lucky with this devastating disease. He has only had Pseudomonas (bacterial infection) one time and has never tested positive for it again. He has only had to MSSA infections (also bacterial infections)......no MRSA! We have been so blessed with the health of his lungs....I guess we shouldn't even complain, but I want a cure. Currently, Trevor is taking Creon 20 (15 capsules per day for digestion) , Azithromycin ( 1 tablet 3 days a week as an anti inflammatory for his lungs), Periactin ( 2 tablets per day to increase appetite), Source CF soft gels ( 1 capsule per day, multivitamin), zantac as needed, albuterol and hypersal as needed and this list is just a drop in the bucket of what an average CF'r takes. At any rate....I am hoping for a great report when we go on the 15th for his check up!
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