As of today’s clinic visit Troy’s height is 90.6cm and weight is 12.3 kilograms. That places him at a BMI-for-age at the 13th percentile. Our goal is 30% to 50%! The nutritionist said that we should try to feed him 400 calories three times per day and 300 calories one time per day. Up to now I have always counted fat, so we will start to count calories more carefully. When he came home from the clinic he watched the thunder and lighting outside and ate a bowl of macaroni and cheese. I don’t want him eating on the couch but he wanted to be close to the storm!
As for chest physical therapy, I explained I am not using a second drug they gave us for the nebulizer because I have read results are not proven for children under 6 (plus the co-pay at the pharmacy is $200!). I was told that if we are committed to physical therapy with the vest or our hands we can help his lungs tremendously without the second drug. But if there is inflammation we will have to start using it. So now we have a second chance to keep him on albuterol, enzymes, and manual/vest therapy only! Troy–I need your help on this so please cooperate!
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