I don't have a great blog title, no real words of wisdom, as I tell those closest to me, I've got nothing. I have not blogged in almost four months because I waiver back and forth between telling the truth or telling people what they want to hear. Yes, Brendan has several foods he can tolerate...potato, banana, almond milk, pineapple, corn, strawberries, beef (we think?) and carrots. Insert sarcasm here. My son is two and a half and this is his diet...on the days I can beg, plead, or trick him into eating. Most days, he nurses, drinks almond milk, and has a banana and/or potato. When you have a child with FPIES, not only is it a battle to find a safe food, but it is also a fight to get your child to trust they can eat a food that won't make them sick, especially as they get older!
We have added a few foods but again, I have yet to find a feeding therapist (or anyone for that matter) to get him to eat. I take that back. My mother-in-law visited for a week recently and Brendan ate like a champ for her. Now? He won't even touch a potato. What am I doing wrong? There is nothing more frustrating than the inability to feed your child appropriately. What am I supposed to do? Well, I generally tell everyone Brendan is doing well...because he is, socially, emotionally, and physically. If you spend a few minutes with him, you would never know how he struggles. I firmly believe he would not be doing as well if I were not still nursing him. I thank God every day that I still have the ability to nurse him. We have not been to the doctor since September because I wanted to give Brendan a break. We have been treating him at home, although we are way overdue for a recheck on his iron levels etc. We will resume our doctor appointments pretty directly. I say this because I made an attempt to drink coffee for a few days, thinking he is older with a more mature gut. We are done with the reactions through breast milk, right? I was wrong. He had horrible poopy diapers and slept a lot well after.
To Nathansmom, thank you, thank you, thank you. I have gone so far into my FPIES hole that I didn't think anyone was reading my blogs anymore. Thank you for your recent response. You have given me the inspiration to continue blogging. I have found pretending is a way to cope, right or wrong. Fake it until you make it, right? We will get through this but for now, it's nothing more than frustrating and pretty isolating. You can go through the motions and pretend everything is okay, even when it is not. My best advice, hold on and don't let go because FPIES has to go away!