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."
Wednesday, June 8, 2011
Reflections on a year....
I recently found a post I did on babycenter for this very trip, taken a year ago....I titled it "Anxious for our consult at CHOP", and wrote....Ok, talk about flooding the message boards but when alot of new things start surfacing or tying into my son's issues, I get a little hungry (no pun intended) for knowledge! Learning from all if you is helping SO much, thank you for listening to me! ;)
We have our appt in a week, we will travel from MN to PA for this 2nd opinion, and as my son only continues to get sicker- I am anxious to go and see what their evaluation will bring.
I know so many of you are in the same boat, and it is good to see all the support...thank you for letting me learn from you all! No doubt I'll have a few more things to add in the next week as my mind remains ON this upcoming evaluation!
If anyone has any suggestions for what to ask or say while we are there, I'd appreciate it. I got us an appointment with a Dietitian that day as well, we gave a great Dietitian here but wanted to get insights from them to bring back here too. We are just so excited at the possibility of getting some answers and recognition for what our son goes through on a daily basis.
Wow?! We have come SO far in one year!! One year to diagnosis, another year to healing. We went to CHOP for the diagnosis and with the consult of Dr.Pawlowski we were able to get a handle, and control of his allergy triggers....but not after the damage to his intestines had already been done. Which brought us to our next doctor, a GI doctor who helped heal his inflammation (and confirm his soy intolerance)! Our next stop was the PCRCD for a consult with Dr.Jyonouchi and her expertize on protein intolerances and the "root" of his allergy and beginning stages of healing his leaky gut. We have learned, done, and accomplished a lot in a year.
Recently, we had a benefit for our Little Man, to raise awareness and funds for research as well as funds for his medical and specialized food expenses. His godmother, my sweet sister-in-law, made a slideshow to share his story. I have turned that slideshow into a video to share here: FPIES: Our Little Man's journey.