It’s been quite awhile, hasn’t it? I’d like to give a few updates on what’s been going on and why this site has been so quiet.
The main thing is that my son was diagnosed with multiple food allergies, both IgE and FPIES. I have had to remove diary, eggs, and soy from my diet for the past six months since he is still nursing and reacts when I eat those things. Recently I’ve been able to add soy back in. My son also is allergic to peanuts, tree nuts, fish, and all grains. It’s been a very challenging and scary road to walk, particularly when he has a reaction to a new food. Thankfully testing eliminated some of the guesswork, but because of the FPIES allergy-type, we sometimes find a food that wouldn’t be a typical allergen. He has what is known as an acute FPIES reaction when that happens, vomiting over and over again starting about four hours after ingesting the food. He goes until his stomach is completely empty, and sometimes longer. The risk with this allergy type, besides dehydration, is that he can easily go into shock. Fortunately we have been able to rehydrate him at home so far.
Another recent event was a camping accident that involved my daughter and resulted in second-degree burns on her face. There is nothing that could have been done to prevent it. It was truly a freak accident. Thankfully, we were only 17 minutes away from a top burn center and she received some of the best burn care in the nation. She is recovering well. Her face just happens to look like she got some sunburn, and no damage was done to her airway or eyes! She is a testament to the Father’s protection, goodness, and healing. Right now she is processing emotionally, so that results in some extra cranky behaviors and sleep problems. Hopefully all of that will resolve over time.
In addition, my daughter has a mysterious GI condition that looks like severe silent reflux combined with a milk intolerance, but we really aren’t sure. She’s been referred to a pediatric GI. What happens is that she will vomit sometimes, only in the morning once she gets up, usually nonstop. Sometimes her prescribed Zofran calms it down. She takes an antacid and an antihistamine every night, but it doesn’t always help, particularly if she’s had dairy. She also had other symptoms of lactose or milk protein intolerance before we removed it entirely from her diet. Now she’s doing much better in that area.
This has been such a time-consuming and emotional journey for us. I have literally not had time to write, or plan, or do much that requires extended focus or brain power. I truly hope to begin writing again before Christmas, but we’ll just have to see.
We’re beginning home “preschool” with my daughter next month, combining some Mennonite and Montessori curriculum. I’d like to share more about that soon. For now, you can find some of that on Instagram.
My son will be doing some oral food challenges in the near future if he can have buckwheat (not a grain!) so that we can make a muffin out of it. Next year he should begin oral immunotherapy to try to improve his sensitivity to peanut, and then maybe tree nut or egg. Peanut is the most important, as he is dangerously allergic to it.
So for right now I’m over here loving on my littles, washing laundry, trying to keep it clean-ish, and mostly keeping everyone loved on. Talk to you all again soon, I hope!