Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, September 6, 2010


Stop to smell the er, flowers....

Little man is enjoying his "new" quality of life - ie a baseline. He still has a chronic illness, that hasn't changed. We still have to be very viligent about his diet, his growth, his illness. But, for now- we can smell the roses a bit.
Today, I start to get a little anxious. We are ready for a food trial, we believe little man is ready too. His new formula is optimized and he is growing and maintaining well on it. I play small tweaks to it to be sure I have it at the most palatable for him. His teething this week has played into his readiness to accept his formula. But it also reminds us that we need to get him a safe diet- this will help ensure his nutrition for the next few years. A formula diet will sustain him but what if he stops drinking it, or doesn't drink enough? What then? Tube feedings are options for that kind of situation and in fact was the "normal treatment" for FPIES only a few short years ago; and remains a best case option for those with many triggers to provide for the nutrition needed for proper growth and development. We are grateful Little Man hasn't needed this, but we are by no means out of the woods.
This week, I am often reminded of how sick our little ones with this diagnosis can get....from a mom whose daughter is looking at getting a G-tube placed this week, to another mom whose son is hospitalized after a food fail and very, very sick, to yet another mom who watches and waits as a food fail affects her little girl for the entire week last week.
There is a shared connection, a bond that ties all of us FPIES mommy's - when one of our kids is sick, we all feel it. We know, we've been where they are at.
I'm scared. I'm scared to press on with food trials with the possibility of Little Man getting sick again. I'm scared of not doing food trial and not giving him a diet to expand his nutrition and practice his oral-motor skills and avoid years of feeding therapy. I'm scared Little Man won't be able to enjoy a snack much less a meal with his brothers- something he so wants to join in on, more and more everyday. I am scared he will get so, so sick. I'm scared the doctors here won't know how to treat him if/when he does get sick, I'm scared we'll get blamed for making him sick when we will already be struggling with being the ones to choose which foods and to give him that food.
We have the lamb, we purchased it from an organic farmer whose animals graze on grass (no soy or corn fed meat for our little man). We won't be doing it this week- our schedules are full. We see our GI doctor again on Wednesday. We will discuss doing his lamb trial next week with her. I'm not sure if she will agree he is ready but we are. GI has discussed us doing this as an in-hospital trial. So, we'll see what we discuss and decide this week for those plans.
We're as ready as we can be. We can't stand still, we do not want to go backwards so I always say moving forward is the only direction that makes sense...and the only direction I want to go. We won't know until we try.
So, in the meantime- we will have a busy week with school starting, working 3days this week (I am part-time so a 3day work week is a full week to me!), and just all the other busy-ness of a family just trying to get by and make ends meet.
We will do our best to continue to smell the roses before we take these next steps. Next steps that could either give Little Man his first official safe food, or make him sick and set him back once again....

1 comment:

  1. Trying this again...
    I wish you guys all the best with the lamb trial. FPIES is a monster, that's for SURE! Kara's back at baseline finally and how quickly I forget that just last week I was home with her almost every day to the point of almost needed IV fluids again. She's so happy and it seems like the far past!
    I'm really anxious for a big day for both of us for appointments tomorrow. We'll have to keep each other updated!