Broken

So much has happened lately, but with the holidays coming, I told myself I needed to take an FPIES break. I have since learned that it is impossible to take an FPIES break.

Eggs and chicken have been taken out of Carter’s diet and he is doing much better. His chronic runny nose and cough are gone.  He is sleeping through the night again and is all around, a much happier boy.  He has confirmed for us that he was reacting to the soy fed to the chickens. I will begin my quest for grass fed chicken and eggs in the New Year.  This also makes me wonder about all other meats. I will have to find trusted ranchers or wild game, but once again, that will all be addressed in the New Year. And then there’s cow’s milk . . . Is Carter reacting to the cow’s milk proteins or the soy fed to the cows? But that will all be saved for another blog, after some more research.

We will also be traveling to Sacramento to have allergy patch testing done on Carter. We will be there for a week while the test is conducted and the results are interrupted. Patch testing involves taking the food and applying it directly to the skin for 48 hours. The patches are removed and the reaction to the skin is noted. The area is then read again, 48 hours later and a final result is given. They will be placing approximately 15 patches across Carter’s back. We are grateful to some wonderful family and friends who are opening their homes to Carter and me so that we do not have to travel back and forth. I am hopeful that the patch testing will provide a guide as we introduce new foods.

I was reading something the other day written by another FPIES mom, who described herself as Broken. In truth, FPIES has broken us all, over and over again. Every time a reaction happens, every time another product is found to be unsafe, I feel like I’ve been broken again. There are no easy answers. Discovering that almost all soaps were unsafe for Carter, was saddening, but bearable. Discovering that many of the toddler friendly Crayola products contain soy and are therefore unsafe for Carter was devastating. Both the Crayola washable markers and many of the Color Wonder products contain soy. It is in these moments where I feel that I will never be able to create a Carter safe environment, even in my own home.  It is my responsibility to provide the most normal life possible for Carter, to make sure he has as many normal toddler moments as possible. In an effort to do this I made Carter some home made play dough. We got out some cookie cutters and were so excited to see him experiencing a normal toddler moment. Unfortunately, he wasn’t as excited about it. He looked at and watched us play with it, but didn’t play himself. I’m just not sure he knew what to do with it. We’ll have to try again, this time getting his brothers involved. Hopefully watching them play with it will encourage him to play too.

I worry about his language development too. He seems to be behind in his speech. There are maybe only 3 to 5 words that are understandable, the rest of his speech is just inflection, sometimes using the first syllable of a word, but never the whole word. It is an issue I plan to address with his pediatrician at his next appointment.

So I wonder how any parent of a chronically ill child, especially moms who end up providing most of the primary care, could not feel broken. But it is in those moments where we have fallen to our knees that we find the strength to build ourselves back up, maybe just a little stronger than before. It is this extra strength that propels us through the next fight, to that next moment where we have given all that we are, where we once again are broken. And it all begins again.