Monday, January 13, 2014

New year, new reflux?

Day 228
Jan 7, 2014

Happy new year!

A lot has happened in the last two months so we will try to explain briefly.  The powder doses increased by 25mg each time until we hit 300, then it jumped to 400, and now 500mg.  It's a little crazy how much is in the little condiment cups now vs the wisps of powder in the beginning.  He's still doing fine so we can't complain.

We did get pretty nervous before Christmas.  We love the allergist but the devil can be in the details.  They ran out if his walnut powder right before we were set to leave town.  We called every day for three days before they finally admitted they were out.  The short version is they didn't order soon enough and then the shipment arrived late.  We got down to out last dose.  Read that again.  The last one.  And supposed to be leaving town.  I thought we might have to go buy walnuts in shell, wash them, shell and smash them, borrow or buy some medical grade scale...  Ugh!  I thought I had an ulcer by the time they got the powder.  I do have a recurrence of reflux, which is not making me happy.  We did have to pause and remember that we don't have another allergist option.  But at the same time - we politely raised some cain with the nurse and front desk lady.  Daniel got to have the face to face with the allergist.  Great guy but man... he needs to let someone else keep up with ordering before a mom or dad goes nuclear on him.  Daniel tried to push that agenda and so did I.  We can't have that happen again.  There is a lot of time, stress, and money tied up in this operation!  At least they apologized.  Small recompense for the stress :). I've never been so happy to see condiment cups in my life! (Daniel said this to me when I texted him a photo of two ziploc bags full of them!)

But as always... God makes it happen.  It was hard to have no backup plan, no way to solve the problem.  That's torture for engineers!  :). But you have to let go.

Christmas and New Years were wonderful with family and friends.  It was neat to see how many folks kept p in mind and asked questions to keep him safe.  We had a very proud moment overhearing him tell on of our dear friends "you have to check the label," when asking for a snack.  And it's cuter in 4 year old speak / lisp.

Other cool stuff:
-504 webinar Tuesday jan 14 sponsored by parents of kids with food allergies - hope we continue to learn good info tomorrow
-restaurant blog takes on food allergies from the other side - well done and helpful.
http://www.arlnow.com/2014/01/09/restaurant-talk-dealing-with-food-allergies/
-used the heck out of the allergy eats app while traveling.  As the database grows it gets better but some places (Disney) were great!  http://www.allergyeats.com/disney/.  The mobile app didn't seem to work for Disney but the web page worked.

Happy new year!
The Walton crew

No comments:

Post a Comment