Warrior

Again, I borrow words from another FPIES mom. "Our little ones are the heroes that carry more than most ever could bear... and we have the honor of being their voice until theirs are heard...". Thank you very much Katie for these heartfelt words that I keep coming back to time and again for my continued strength and encouragement. As I've noted before- this is a difficult journey. Patience, strength, endurance, discipline are tested at every turn. Just when you think you might have a chance to catch your breath, another wave comes in.

My posts have been infrequent lately, I have to admit- I've been feeling overwhelmed. The anemia is scaring me. Will he improve? Will he need a transfusion? Will he ever be able to tolerate anything? Will doctors ever know how to treat symptoms of an FPIES child? Will he be ok? Have I waited too long to find his baseline? His little body is tired but he is resilient. He is my little warrior.

The anemia and the hospital stay, hospital stay of friends FPIES kids following reactions, and words of inspiration from another FPIES mom (quoted above) with looking at my tired little warrior's pale face have set a new drive in me. I am the voice for him, but is my voice is being heard?  The night we came home from the hospital, I had a dream. My grandma (who passed away when I was 17yrs,old but was like a mom to me) came to me and wrapped me in a big hug that she was always famous for, then she walked with me awhile- her arm around me. She was giving me strength and telling me she would walk with me for awhile during this scary time of his anemic state. Well, she has done so much more already....just like Grandma- to accomplish great things to HELP people, even from Heaven.

We have moved forward with consults with a 2nd team of doctors. We are not looking for new doctors or a new hospital for Little Man's continued care. We are merely looking for more support for us, and resources for our current doctors who are unfamiliar with FPIES (but are starting to learn more so they can help our little man). We go on Wednesday to a more local Allergist and we have a consult in Oct. for a nearby GI doctor. It is our hope by expanding our team, we can have more help in filling in the missing pieces to our FPIES puzzle. We need help, little man is finally in a pain free state but unfortunately so many months of being chronically ill has taken its toll on his little body. We keep fighting, he keeps fighting. He is a warrior.