I have been really worried about Jayen's weight since our last appointment at Dr. Melmed's office when they said he lost more. His appetite has really decreased lately. I've been trying to add as many calories as I can to his current foods with sour cream, butter, and anything I'm not supposed to eat! But I still wanted to make sure that I stayed on top it. This morning we met with Dr. Easter for a weight check and my suspicions were right; Jayen has lost even more weight. I'm so thankful Dr. Easter isn't in arms and is willing to let us work on this a little longer before doing anything drastic. Dr. Easter agreed that since we are seizure free and managing behaviors that we don't want to rock the boat too much. I'm so thankful in his cautious approach. Jayen currently has a BMI of zero. I didn't even know that was possible! My eight pack son has no body fat! We will add a carnation instant breakfast or some kind of drink to add more calories and see where we can get his weight. I will continue to worry and hope this doesn't become a bigger problem!
We also asked Dr. Easter about one of Jayen's pins from brain surgery. It seems so be sticking out much further than usual and almost floats around underneath his skin. Dr. Easter will put in a referral for a neurosurgery consult. Add that to the worry pile too!
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