Bloodwork day

Today is bloodwork day for both kids.  Usually only one of us is able to go and manage both kids.  Today is Jon's turn.  We will head to Nemours and meet with Dr. Wheeler, their geneticist, and Sandy, their dietician.  The other important person in the room is Miss Laura.  Allie LOVES Miss Laura.  She is the one who draws the blood each time and has become a friend of ours.  Every time At the end of drawing the blood, Allie has to have Miss Laura pick her up and give her a big hug.  It always helps her feel better.  Both kids do so well getting stuck with the needle.  Allie says "no, no, no" and then squeezes tight on me but doesn't cry anymore.  Brent screams for a few seconds, then gets his thumb in his mouth with his blanket and calms himself while I squeeze him tight.  They are so used to going to the doctor that do not fear anything.  We have to turn in our food logs each appt. to Sandy and evaluate how they are.  Most medicines, including antibiotics have "phe" in them so we have to communicate constantly with Sandy and adjust their diets accordingly.  We always have the same questions asked to us, "any skin rashes, seizures, tremors? What new things have they done?"  If their "phe" levels get too high in their brains, seizures can happen among numerous other things.  Also their brain development is tied directly to our ability to manage their diet.  Good thing I have a type A personality! Bloodwork day will end with long naps taken by both kids...they get so worn out from the 2 and a half hour appt.  Today maybe we will take them to Twistee Treat??  Anything to help them feel like "normal" kids...