Long overdue update!

I know, I know, it's been way too long! With summer weather....well, I don't know what exactly to call it when it's literally over 100 degrees one day and then the next barely 70, but....life has been very hectic! We try to get outside as much as possible, so I feel like I barely have time to do anything else!

I'm pretty bummed this morning. I'm not sure what is going on with Brynn.  Last week one day, daycare called me and said she had a HORRIBLE, raw butt.  Since it was such a nice day, she just let her run around outside with no diaper on and just a onsie (unbuttoned) to air out.  We hadn't done any food trials that week, so I have no clue what caused it.  I decided maybe we should pull all her safe fruit for a few days to see if that helps, and it did.  So Monday we started to add her safe fruits back into her diet, but only giving her small amounts of them and only a couple times a day. It's really hard to NOT give her fruit, because it's pretty much all that is safe for her other than pototoes and oatmeal.  Monday night she was up quite a bit at night and was crabby/clingy at daycare so I was thinking maybe she had an ear infection. Brought her in and her ears were just fine.  So last night, about 11pm, she woke up and I changed her diaper. It was awful.  Gave her a bottle and put her back to bed. She was then up from about 2-4am screaming.  What the heck is going on??  She had sweet potato, a bunch of blueberries and a strawberry for supper...was it one of the fruits? I thought they were both safe? (Sweet potato is for sure safe)  Now daycare just texted me that she had another terrible diaper and her butt is raw as can be.  =(  Blueberries?  I told her not to give her any blueberries today to see if that helped. I don't know what else to do.....

Another battle I've been struggling with is her probiotic.  After we got back form our New Jersey appt, we started both the EleCare and the probiotic at about the same time.  Since then, she has been doing A-mazing with food trials, only failing eggs and having a couple other little mishaps with crumbs and cross contamination.  Her current does of probiotic is so small--she only gets 2 tiny pinches every morning.  So, is that minute amount of the probiotic REALLY helping her? Or does she not need it anymore because the EleCare actually made the difference and healed her chronic inflammation?  I just don't know the answers and I hate knowing that I don't have a professional to turn to for advice.  This is all on Danny and I.  We are supposed to figure this out on our own.  I'm not a doctor, how I am supposed to know all of this?? Ask me about autism or behavior analysis and I can help, but all of this GI stuff?  I have no clue. 

Do I pull all of her fruit (except pears since those are a long-time pass) and re-introduce them? That may be the answer.  Should we work on increasing her probiotic and put all food trials on the back-burner? Maybe.  I want so badly for her to be able to eat more foods, so I hate to stop food trials. I want to find her foods other than fruit that she can tolerate so we don't end up giving her so many servings of fruit every day.  Could something else be going on that has nothing to do with her probiotic OR fruit? Good chance....like I said, I'm not a doctor though. Sure would be nice to have a pediatrician on board with FPIES so I'd have someone to call. 

When things like this are going on, it is so incredibly hard for me to focus on anything else. I have to remind myself that I still need to get my job done, I still need to clean my house, I still need to take care of my kids in other ways besides watching what goes into their bodies.  And I need to take care of myself. I just need to take it day by day, step by step and have faith that I will be able to figure this all out. And I pray every day that FPIES is coming to an end, not just for Brynn, but for all the little ones that suffer because of it....please.....