Aaron saw Dr S this morning. He was very pleased with how he looks. He has gained more weight even though Dr C decreased his amount of calories. We talked about switching out his BARD to a Mic Key but we are going to try a binder first. We have to figure something out because he doesn't sleep all night and he pulls out his tube whenever he is awake. I am going on 3 hours a sleep a night and I'm a little grouchy. He has low blood sugar and diabetes insipidus so he has to get just the right amount of formula and water. He can easily get dehydrated by pulling out his tube because his body doesn't keep any liquid. Today was a good say and he had fairly good head control, even the nurse noticed. These seizures take so much out of him and leave him weak for long periods of time. Hopefully even with the other boys in school we can still keep away from any germs so we can stay out of the hospital. No more appointments with Dr S until his tube needs changed. That's 1 less appointment a month!! We usually average 4-5 Dr appointments a month plus all of their therapy appointments. We are always on the go!!
I LOVE this smile
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