Get Thee to a Nutritionist

This morning Dr. G called back.  He basically agreed that Mr. Charm might possibly have a milder form of FPIES, and he thought our idea of a self-made elimination diet wasn’t bad.  He said most doctors won’t suggest elimination diets unless they’re absolutely necessary because most people don’t want to do … Continue reading

At the Allergist

Today we had a follow-up appointment with the allergist.  I was nervous, because I’d done as much reading as I possibly could in the previous 24 hours, and it appears to be quite common, at least, from the moms who report their experience on message board support groups for FPIES, … Continue reading

How Could an Accurate Diagnosis Still Be So Inaccurate?

Bright and early on Wednesday we had a follow-up appointment with the pediatric gastroenterologist.  This is the same doctor from the hospital; he apparently also has hours a few times a week in a town closer to us.  God Bless him!  When Mr. Charm needed a pediatric GI doctor, we … Continue reading

Gluten Free and On The Dole

The hospital gave us 2 cans of Neocate and the remaining pre-mixed formula they had ready for Mr. Happy when we left the hospital.  This only provided, by my estimation, enough food for Mr. Happy to last until Monday or Tuesday of the following week.  Not a lot of time … Continue reading

Released!

Tuesday I woke up to another set of doctor’s rounds with the gaggle of interns.  Out of the blue, they informed me that if Mr. Happy ate well this morning, as expected, he would be released that afternoon.  Say what?  I was dumbfounded!  Of course I wanted him to come home, … Continue reading

Infant/Toddler Unit

I woke up in the morning to discover that sometime in the night, Mr. Happy had decided that he no longer needed to be on oxygen.  He had pulled the canula out of his nose and it was over his head like a headband.  The nurse saw this while I … Continue reading

Intermediate Care Ward – Day 3 (Both kids in the hospital!)

For some reason, I woke at 6:15 a.m. and couldn’t go back to sleep.  So I got up, pumped and dumped, cleaned the pump equipment and was heading into the shower at 7:15 a.m. when Mom called me.  She immediately asked me if I was awake, as sometimes when she … Continue reading

Intermediate Care Ward – Day 2

We woke up to find Mr. Happy sleeping on a wedge pillow.  Apparently sometime during the night the nurses and doctor decided to elevate him to perhaps help his breathing.  We talked with the dayshift crew and find out the plan for the day.  They decided they wanted to rule out anything … Continue reading