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."
Friday, January 21, 2011
Stuck on the wheel....
That is where we were a year ago. But today, we have made many advances in recent months and yet- we can't seem to stay off this wheel. Trial followed by fail, followed by inflammation- is it healing, is it not healing? What is going on in there?
We had plans for next steps, but we're stuck. How long will we stay stuck? Even with the best laid plans, FPIES is in complete control and it's not giving an inch.
It is understood that when a trigger food is ingested, the reaction is a t-cell response; where the body attacks the food as if it was a toxin in the body. This results in an acute and severe gut inflammation. We know Little Man had complete gut healing with TPN, a mere week before we trialed the multivitamin, we had confirmation of that from the upper endoscopy he had done. But now, we are not sure how much inflammation he has from the vitamin fail (thought to be from the corn starch in the vitamin), and an even bigger question- how long does it take to heal?
We continue to watch for the signs of decreased inflammation, a weight gain would be a a good sign. We don't have that, despite eating 1100+calories/day. Sleeping for more than 2-3hours at a time would be good. We certainly don't have that. I feel like I have a newborn baby, eats every 2hrs all day long and then up 3-4times a night. I'm lucky if he eats and goes right back to sleep. We are looking into other reasons why he is not getting restful sleep though- more on our upcoming Sleep Study later.
For now, we go back to the GI- we have agreed he needs another scope. We need to know why we are stuck on this wheel- is there something more than inflammation going on and how bad is it? We go in Monday morning for that. We will also get a flex.sigmoidoscopy as well, to check for sources of bleeding as his diapers show signs of blood tinged stools again (along with the flecks of blood thought to be from a fissure).
In the words of another FPIES mom this week: "Where do I send in my resignation papers?" I want to be done with FPIES. Or, at least- if I can't resign...where can I get a vacation? Not even a vacation from little man- can I just get a break from his FPIES? It's been a long week- as the stress of a food trial and fail brings on is both emotional and physical. And I've felt deflated more than once. On my knees....asking for help from Above....asking for the continued strength, the direction to go in next, and most of all- to be a better mom to all my little men. FPIES has grabbed such a strong hold on our lives for so long, we struggle everyday still. It is less and less these days than it was a year ago but we still look for new ways to cope with it all. New challenges that keep coming our way and more and more on this wheel. We were just ready for a break. Will that come soon?
The family that prays together, stays together....we will get through this....we thank all our family, friends and supporters for all the prayers over the past year. We feel the strength of the prayers offered up for us- we have been held up by your prayers....bless you.