Wednesday, February 6, 2013

Data.

So we are recording (of our own free will :) every calorie that goes into Taizi's mouth so they can know exactly what he's had.
Yesterday was a bear.  Or he was a bear :) He refused to eat at all and instead of clamping his mouth...tried to just keep his mouth wide open and then would somehow open the back hatch of his mouth and swallow without ever closing his mouth.  :(  This is a new thing for him as when he didn't want something he clamped his teeth so tight in the past but this is a wide open mouth but refusing to close it.

This morning Dean fed him breakfast, one that he loves. Non fortified.  He did the same thing so maybe it's his new thing. However he ate the whole jar and wasn't upset at all. It looks strange for sure as he doesn't close his mouth.

The more I look at Cystic Fibrosis (due to a friend having a daughter w/ CF) and the medical team's constant suggestion of it...the more this looks like part of what Taizi is dealing with.  If so...it's highly unlikely that any amount of our "whipped cream fortified food" will do anything.  However we'll keep going as further testing is underway.

Thank you all for praying and for offering advice.

Yes there are serious health concerns that are more common like allergies, thyroid issues, diabetes etc that ALL will be ruled out as we go. His testing is very extensive and we are praying we find out soon what's all going on.

Today is sunny, beautiful and we are choosing to make it a beautiful day.

Do the same.

:)

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