Hunter had his second "official" appointment today. He had a blood draw. They got it in one try, although she had to fish around quite a bit and then couldn't get as much blood as was requested...hoping it's enough.
His formula intake has gone way down...around 10-12 ounces for a couple days, then 2 ounces yesterday, and nothing today...not even one sip. He's drinking water...enough to get by, but he'll go downhill quickly at the rate he's going. His food intake is good though....certainly not enough to make up the lost calories or nutrition that he's missing from the formula, but decent compared to normal.
He was not himself yesterday until late afternoon...sick and very sleepy (slept 17 hours total). He has been surprisingly energetic and happy today which I don't understand seeing how little he is eating/drinking, but I'm glad.
He is about a pound and a half less than what he was at his last appointment two weeks ago. He weighed in at 29 pounds 9 ounces. He is 4 1/2 years old (five on 9/25). I think it's most likely just from being a little dehydrated. We're watching him closely. He's not peeing again, but is acting totally normal. I usually go more off of how he looks/acts rather than any numbers from anything else, but I must say that the lack of fluid and lack of peeing is starting to concern me again even w/o symptoms.
Hunter told the dr. that he doesn't like the study medicine because it's too sweet.
It was about a 2 hour appointment. They check his vitals every time, urine sample, dr. does an overall assessment, they ask about any/all meds, symptoms, changes to anything, and a LOT of just waiting around.
They are also having a tough time getting people to qualify for the study. She asked me today if we'd still be willing to have Kaleigh (because she's more symptomatic than Tanner) in the study if she qualified. She's going to talk to our regular GI and when the kids have their scopes next week, she wants our GI to follow the study guidelines on how/where/number of biopsies just in case. They do not allow siblings to be in the study at the same time, but they do allow you to start the study up to 6 weeks after having an endoscopy. So what she's hoping to do (assuming Kaleigh qualified) would be to get permission to start Kaleigh at the very end of Hunter's study, but within the 6 week time frame. Kaleigh is only being scoped on one food this time, so who knows...OTOH, it's peanuts, so who knows....
I think that's about it. Our next appointment is towards the end of this month. Hunter will be there for 8 hours, with an IV for more frequent blood draws that day.
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