Thank you to all of you who faithfully pray for Ana every day... God heard our prayers! Ana's tonsils were "HUGE", as the doctor put it. She is having alot of pain, but the meds are helping. She is playing as usual with a little added grumpiness.
This trip to MUSC was very productive. Along with getting this surgery done, we were able to meet with the nutritionist about Ana's massive weight gain over the last 18 months. When Ana had all the testing done last August we learned that her Resting Metabolic Rate is very low. A child Ana's age and size should need 825 calories per day at rest, to function normally. Ana only needs 313 calories per day at rest. She functions at 38% which is very slow. We have been giving her 1200 calories per day (as directed)... way too much caloric intake for a child which such a slow metabolic rate. Yesterday the physicians looked over her tests and lowered her intake to 780 calories/day and this rate will be lowered again to 580 calories/day in two weeks. This is were it gets complicated.... Ana doesn't produce energy correctly... she can't go long hours without food... we have to slow her feed so she keeps the pump on the same amount of time and also add extra water she will loose by cutting back her formula. We cannot let her continue to gain at this rate because the heavier she gets, the more ATP (energy) she needs to function... energy she cannot make.... What happens when you can't make enough ATP for each system in the body?? You get nerve damage... permanent nerve damage... hence the reason this is a progressive neuro-degenerative disorder. Anyways, great informative visit to MUSC!
Please keep praying!!
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