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."
Thursday, June 16, 2011
Journals have been incredibly helpful. I started in March of 2010 and continue every single day since- even when he was in the hospital. It becomes tedious work because I was transferring sloppy, crazy, quickly written information to legible printed information in a table format in a word program. The work is tedious but it also very reflective- which is incredibly helpful for seeing larger patterns to things, allowing me to note something one day without worrying about it until the picture is filled in- because of his many delayed reactions.
Now, my journals consist of 2 parts. One template that I print blank, hand write in and file after I summerize the information by the day. It is the daily summerization that I still put into a table in a word document, and the reflection is still helping.
For a few examples of my jouranls, take a peek in my File Cabinet.
Today, I logged a few days worth (almost 2 weeks!)- I don't usually get so behind but with the start of summer and a new schedule in our household...well, you know the drill. Anyway....I realize I wrote down on the 2nd day of Elk that he had a bloody diaper with streaks of mucus. I noted it, I may have thought it was left over from blueberries, I may have been waiting to see if it would happen again (as I noted the next day that the diaper was free of visible blood or mucus). I've been trying to analyze the symptoms following Elk to decide if it is something we should keep trying to find ways to feed to him. With these logs, and the reflection I am given on those days and since then, I realize he is just not ready....banana= blood in diaper, blueberry = blood in diaper, Elk = blood in diaper. I feel his body is just not quite ready for this diet yet....that he still has stages of healing that do not include this kind of trial right now. So what now?
Now, we turn back to his "safe" diet- his formula. I am continuing to work through the recipe in that- tiny, tiny changes- increasing the protein powder, increasing the fat, changing the arrowroot starch amounts, getting the most of the probiotic I put in it (and get cultured formula!). And, look once again, into how to fill in his nutrients without foods. A B Vitamin Complex I had purchased a few weeks back is standing out in the cupboard. I had put it aside to do the Elk trial instead. The last vitamin trial we did did not go very well, so we have been leary of doing vitamins when we would rather do food. But if food is too difficult on his system still, if his gut isn't ready, if we need to keep working through probiotics having their effects on his gut, we need to keep exploring how to fill in these essential nutrients.
With the addition of B vitamins, his formula will be much closer to complete. We still need some micronutrients like copper and magnense. We are working on finding non corn fed chickens for EGGS that would fill in those final micronutrients. With these nutrients being provided, the gut flora will not have to synthesize so much of them...and maybe that is our piece to the next step- to re-assign the gut flora to it's job of keeping the gut healthy and keeping the "bad" gut bugs at bay, instead of working overtime in so many area's to keep his other systems growing and thriving. We have already witnessed many positive changes from the addition of probiotics to assisting the gut flora in his health.
We will continue B Vitamin trial, which is looking well 3 days in, and then we will continue strengthening his probiotic dosage and building his gut flora, restoring his "leaky" gut. And then we will look to introduce foods that will support all of this building and growth. Oh, and in between there- we will enjoy our Little Man, and enjoy summer with our boys!