Friday, August 24, 2012

Third Birthday, Magical FPIES Milestone?

So, we are fast approaching Fall.  School is about to start and Brendan's third birthday has passed.  Isn't three supposed to be the magical number?  You know, that number they throw at you to give you some sort of hope that your child has outgrown FPIES and it has become nothing but a distant memory?

Although, it doesn't feel like it will ever be a distant memory...especially for Brendan.  We took him for his three year well exam yesterday and the moment we pulled into the parking garage of the doctor's office, he started sobbing and screaming "No, no, the hospital is bad!".  Wow, if he felt this strongly about our family physician, how will he feel when we have to go back to Children's hospital to check his iron levels in the next few weeks?  I think I will be taking his dad as back up on that day.

We updated our family doctor on Brendan's latest rice food trial, the fail and the plan to avoid grains until he is 5.  We discussed immunizations and I agreed to the administration of previous shots but I was still adamant in my refusal of certain vaccines.  We will worry about that if and when he attends public school.  There was also the discussion (on my part) about Brendan's clumsiness in the gross motor arena.  We are always assured that everything is normal considering Brendan's late start with walking.  I'm sure the doctors are right but I have to admit, I always worry whether his prolonged malnutrition will have any lasting effect on his physical development.

Things are a lot better than they were this time last year.  We are moving forward, counting our blessings, and Brendan continues to amaze us every day.  There is not much else to report since we are not considering grain or soy food trials.  We will just continue to be agressive in the reading of food labels and prepare Brendan friendly meals at home. 

Oh, I almost forgot...if anyone was wondering about the outcome of my grievance with our local ER, I met with them.  They offered the initial appropriate attention and sincerity that one would expect.  I saw the typical shocking looks and emotional responses when you share your child's FPIES journey but that's kind of where it ends.  We've come to terms with the fact that we will deal with reactions at home but at least we won't waste time driving to the ER and explaining Brendan's condition anymore.  I suppose I've come full circle.  At the beginning of Brendan's journey, I used to wonder where all the seasoned parents of older FPIES children go.  Now, I understand.  Some stay active in the online forums and some choose/need to put it past them and move on.  Since we are still dealing with FPIES, I can't say where we will land.  I hope to continue blogging but we definitely fall off the radar more and more.  I choose to look at it as a good thing.  It means we are living more and finding ways around FPIES. :)