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."
Monday, May 30, 2011
Little Man’s formula is approximately 21cal/oz. His needs are ~900-1100calories/day based on DRI- Dietary Reference Intakes. It has become his normal to increase his intakes following a reaction. Is it due to the inflammation causing malabsorption? Is it due to the weight loss following a reaction? Following the last few reactions (new probiotic, banana, and IV sucrose), little man lost almost 2#- all this work to gain those pounds gone in a matter of days. He needed to regain that weight, 3500calories to make a pound. His body puts a drive in him that is very strong. For the past few weeks, every 45-90min, he has been taking a 4-6oz.bottle. It seems we have barely turned around from sitting down to finish the one bottle when he is on to the next one. This goes on day, and night with night bottles slowing down to ~2-3hrs.instead. If he goes 2-3hrs.during the day (busy, distractions, travel, etc), he will wake more frequently at night- 6times in 9-10hr.night! Thank goodness, that since the probiotics, he has been able to sleep better- less colicky tummy pain and he wakes to eat a bottle and goes right back to sleep…and now he sleeps with us. I’ve wanted this many times over the past 2years- with such frequent night waking, I wanted so many times to just have him want to sleep in our bed- just so we could not only sleep but simply lie down; but he had to be walked, rocked, soothed. Now, he just needs his bottle- but don’t go too far away or that will wake him up (hence the sleeping with us). So, sometime around the middle of the night, he joins us in bed- waking us every few hours just to say ‘bottle’? In a 24hr.period he has been averaging 1400-1600calories!! An added 300-500 calories a day! And in 10days, he gained a little over a pound. The extra calories he ate were used by his body to regain his lost weight. This is a good sign. A very good sign. And we breathe a sigh of relief....and celebrate weight gain!