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, September 22, 2010
Little Man needs Vit.C, his hemp milk does not have any- nothing in his diet supplies him with the Vit.C he needs...scurvy anyone? Well, his daddy was a sailor but lets not go there.
We have compounded iron- FeSo4 with Calcium carbonate in a capsule we break open and put with a teeny-tiny amount of water, mix, and syringe it in! He does NOT like it!! But he needs it. He gets it twice a day, so that his body can begin to rebuild his lost supply. His body has adjusted and we are not seeing tummy aches from it now. So, moving on. Iron is better utilized and absorbed in the body if it has Vit.C to go hand in hand with it. So, having a vegetarian diet with just barely enough non-heme iron and no Vit.C to bind it for absorption + bloody stools = anemia. Vit.C made from tapioca = reaction. The pharmacist said Vit.C is made from 1 of 3 things: Corn (um-no, major trigger here and we are FINALLY moved away from ANYTHING corn), Yucca root (ie- tapioca, we now have tapioca as an allergy because of the way he has reacted to it the 3 times we have tried to introduce it- each time getting more and more sensitive to less and less amounts; and finally it can be made from beet sugar. Ah, the smell of sugar beets processing in the plants brings back thoughts of childhood. No, we have not trialed beet root so we are unsure if he could tolerate this either. Why not trial an actual fruit instead? Orange comes to mind, tangerine looked more tempting.
This morning, little man got his first tastes of tangerine. Yea!!!!! He loved it- well, the pieces he would eat anyhow. I am getting more worried about his oral aversion stuff....he was excited at first and he let me put a segment in his mouth (the size of a pea) and chewed it and swallowed it well! He would not however let me give him juice from a cup, or a syringe or a spoon- so segments it was. He played with them for awhile, "pretending" to eat them but not really eating, but he did manage to put another 2 pea size pieces in his mouth along with letting me put in 1 more. It took a lot of "cheer leading" and coaxing though!!
We had some weird behavior for the afternoon but hopeful it was from sucking on a piece of chalk (yes, I am having trouble throwing out all arts and crafts supplies that his brothers still enjoy- keep fooling myself that I can "control" the situation when they come out). He didn't' get much but it may have been what caused his afternoon fussiness. Also, we are battling a cold bug that is making ME icky-achy so I imagine he is feeling similar. It lasted about 5hrs., so yet another day where I get nothing done except holding a 15mo. old little boy who isn't so light anymore! A little bit before his brothers came home from school, he started playing nicely and he has been one.content.little.boy- all evening!!
Wish us luck as we press on to give little man some Vit.C and hopefully aid his body in absorbing his iron so he can kick this anemia!!