FPIES Update #1

 
The past month has been difficult, lonely, overwhelming, a lesson in trusting God, expensive, challenging, discouraging, enlightening, and hopeful. The more we have learned about Norah's condition, the more we realize the seriousness and the need for prayer. As you read this update, would you pray for us and Norah? We believe in a mighty, sovereign God who can do anything He pleases, easily, and a God who loves His children infinitely more than we even comprehend. So, we are praying for complete healing for Norah and for wisdom as we go about the process of treatment.

After our first appointment with the FPIES specialist (about a month ago), we began the intro GAPS diet for Norah, which consisted of organic, free-range, homemade chicken stock for her to drink daily along with nursing. She also began taking fish oil, vitamin D, probiotics, and magnesium. After about a week of this, she began eating chicken skin/fat puree, and then after another week or so, chicken meat pureed. In the last week we have been adding ghee (clarified butter- removes the allergenic/dairy part of butter) to all of her meals for extra fat. We were concerned with her weight, since she hasn't gained much if anything for about 3 months. Then, this past month she lost a little while doing the broth. We have been praying for her to gain, and the Lord is already answering our prayers. In one week, she has gained 11 ounces! We hope this will continue as we add in more foods and fats to her diet. We have to add new foods slowly to watch for reactions, which is why she is still on a very limited amount of foods. She will try beef broth and meat and then can have avocados soon. We will slowly add in cooked, seeded, peeled, pureed veggies in the near future. In the meantime, she is still nursing very frequently, and though it's exhausting (especially at night!) I am thankful I have been able to nurse her this long with her nutritional needs!

This past week I had a pretty rough time processing all of the info from our follow-up phone call appointment with Norah's doc, when we discussed her stool sample results from before we started the diet/supplements. They came back with some serious concerns. It seems FPIES may only be a symptom of a larger problem with her digestive system. It is very complicated, but basically she has some bad bacteria to get rid of, her gallbladder is not producing any bile acids (which are necessary for breaking down and absorbing fat), her calprotectin level is much too high, which is indicative of severe inflammation in her intestines (similar to Crohn's disease), and her ph is much too low/acidic. All of these things (and others I don't understand) work together to prevent her from absorbing nutrients from food the way she should and keep her from gaining weight well. She has also always had a problem pooping, only going every 7-10 days, which we are trying to correct. We aren't sure why she has all of these problems. Along with bacterial imbalance, it may be a genetic mutation. We are hoping/praying after doing her special diet with supplements (we are adding 5 more to address the stool sample results/problems) and re-taking the stool sample test again in February, that these numbers will be drastically better. Please pray along with us for a miracle! If certain numbers do not increase in the next few months (the calprotectin specifically), we may be referred to a gastroenterologist, which we won't be looking forward to (think babies and invasive testing :( )

It's so hard seeing my baby have medical problems and wondering if/when she will be better. Still, the Lord has been so faithful and has blessed us in so many ways already through this process. We know He loves Norah and is in complete control of her life, which He holds in his hands. This has certainly been a lesson in trust for us. We truly do covet your prayers and desire God to be glorified in whatever unfolds! Thank you!