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, August 5, 2011
Potatoes. Probiotics and Molasses....
Then, earlier this week, I took the boys to Wendy's for dinner, after a busy day. We have gotten much better about only eating out rarely but I still have these times when I fall back on the convenience of it. I get them chicken nuggets and a few baked potatoes, and we head home (when I say convenience- I mean it, it is literally down the road from us), I unpacked their dinners and started to prepare the baked potatoes, standing at the table to do so. I have informally made a rule that we only eat from our plates at the table (after having served "buffet style"), we do not serve "family style" because having the food on the table is hard for Little Man. I made a mistake by preparing the potatoes at the table, Little Man moved in to sit in his chair and realized the potato was NOT for him! He screamed, so insulted, so said.....as if I had just taken away his favorite toy-or worse! The cry was heartbreaking, he really thought I had gotten him something- along with the boys.
I caved. He hasn't had potato since he was 7mo.old, when we took food out of his diet. We don't know if he was having problems with it (don't think so), and has not had it since. So, I got my potato, that I hadn't touched yet and gave him some pieces of it. He was SO happy...."yum, yum, good".
He went through the night just fine- no issues showed at all the next day either....good signs and the boys started dreaming about all the potato things we would be able to give him.
No issues all that day,and we continue the 2 scoops of his new probiotic. The next day we give 2 scoops again- and then he has blood in a morning diaper, not much and it mixes in quickly. He proceeds to have 3 more dirty diapers that day (when 1x/day is normal for him). What is this from? The potato? The probiotic? Yes, I know better than to give him something while we're still trialing something else, or before his gut is healed, or this complex of a carbohydrate......I just want to feed him.....
Potato is actually one of the foods I am hoping, once his gut shows more signs of healing, that he could tolerate. I am nervous to push him just yet but I feel the blood could have been from the probiotic increase. We go back to the 1 scoop and we'll hold off on anymore potato right now, but maybe soon?
Last night, I was making dinner (no not Wendy's- real food dinner!) and I made Little Man some of his millet biscuits (water, millet flour) and, on a sorta whim, I decided to add some blackstrap molasses I had picked up a few months ago- because of it's high iron content. He had gingersnaps (almost)! - he enjoyed them! AND he had a good night of sleep, and has done well today. So, I search for more ways to play with molasses.
And today, I played with giving him his probiotic in the morning and at night. Dr.J had theorized he may need that, months ago, and I feel he does- he seems to peak otherwise.
He is otherwise doing well, peaks and valleys of the day. His gums are red/bleeding and he's licking wood, but his hemoglobin is good...I teter between proactive with his IV iron, or waiting it out...He's doing well, he's been doing well and I would love to just sit back and enjoy it (and am trying to) but we did that in April and May too.....and he fell fast, and we landed with more IV infusions and a blood transfusion.....