Too Big For Email

Although it has been some time since I have written, a lot has been happening. It is funny though, because to most people the past few weeks would seem to have moved very slowly!

We began with LittleR’s “feeding tube follow-up” on the 9th. It is only by the grace of GOD that that boy was cleared! Since he was put on “feeding tube watch” in December, he didn’t gain a single ounce. NOPE – not ONE! That is until SIX days before his appointment on the 9th. As it turns out, one of the medications we were trying (to promote intestinal healing) was suppressing his appetite. Six days out – after praying for wisdom and direction – I heard God telling me that he had already given it and that I needed to use it. I made the decision right then to take him off the medication. Over the next six days LittleR gained enough to be cleared for THREE months!

On to the next bit of wisdom and direction…

For months now my attention has been drawn to a diet that is used to promote intestinal healing. This protocol was brought to me from numerous directions - on a consistent basis for many months. At first I dismissed the notion thinking, “why is this being recommended to me – my kids can’t eat food.” But the diet kept coming back to me from one person or another. Finally one day it came to me from a place very close to home and from a very trusted source. Almost as if God was REALLY trying to get my attention with it this time. At first I didn’t even recognize that it was the same diet that had I had been hearing about. It was not until after I was actually researching it that I realized it was.

So with prayer and discernment we decided to try it. I had gotten a cow bone and was prepared to make bone broth for the kids. Then I got “wacked” with this diet again. A friend from across the country had started beef bone broth! WHAT? We were planning to start it the very next day – and we did. The kids did well with the broth. There was no overt reaction, but some strange changes with the stool that I would noted in order to keep an eye on. When LittleM passed a stool that was frothy with white curds in it, I reached out to the West Coast version of me (Ha! I am really starting to wonder if that is true). Confident with her advice I pushed on. For the first time in months BabyM was able to “go” without the help of a laxative. Was this good or bad? A few days later she began to refuse the broth. Great. Historically this is the first clue that LittleM is not tolerating a food. LittleR was still loving his “soup” and eating it a couple of times a day. His stools were improving and there was nothing questionable about them. Still we would have to wait and watch to see if there would be a “build reaction.”



The good and bad news is that we had to stop the broth. This really is a good thing because we only stopped so that the kids could get their immunotherapy treatments. They would have to follow a strict diet surrounding shot time. We are now outside of those “critical days,” but we still have to wait for the T-cells to mature – three more weeks of waiting.

Yesterday I was in prayer – asking the Lord yet again for wisdom. There are times when I just feel so overwhelmed and afraid that I become paralyzed with the decisions concerning what to do next with them. There is no doctor who can tell me, “do this, feed them this, give them this, and they will get better.” As an FPIES mom this is just not a luxury we have. We are forced to go out on a limb – on a gang plank (this is how it often feels) – and make the decisions for our kids with no real (or worthy) guidance. I told God I just needed direction on what to do next. I said, “We have chicken broth in the fridge – is that next?” I know God is awesome and his ways are so much greater than mine, but I rarely expect to have such a clear and quick answer to my prayers. All the same, yesterday afternoon BabyM asked for soup. She hadn’t even mentioned it in DAYS – since the treatment on the 16th – and she wasn’t exactly asking for it last night…she was DEMANDING it.

Ok God, I hear you. I gave them chicken bone broth yesterday, and sat wondering still on how to proceed from here.

As it turns out there are a few moms out there who possess (and proclaim) a strong faith in God and it seems that these moms are being “wacked” with this diet just as I am. It is coming from EVERY direction right now. Is this the answer??? Just this week on a call with some of the moms it seems that we are all interested in at least some of the aspects of this diet. Just today my West Coast friend gives me some more news about how to proceed with this diet. She and I have both been contacting the creator of the diet and this doctor recently gave quite a wake-up call. In a nut shell she said not to let FEAR drive our decision.

I emailed my friend and asked her to call if she had time because this conversation was just too big for email. During the course of our chat we each shared how GOD had led each of us to this diet – but even more than that how God has lead both of us through a journey that would even allow us to CONSIDER this very alternative option.

I am amazed to think about how I even met this FPIES mom. Before her daughter had an official diagnosis of FPIES this woman asked for help with insurance coverage to put her daughter on an elemental formula. God laid it on my heart to send her some of ours so that she could at least SEE if it helped. Here we are many months later seemingly on the SAME path. Still, we are both desperate to know how to proceed.

Today I reminded her of a bit of truth to consider. I was speaking just as much to myself.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
2 Timothy 1:7

So I have to ask myself during those times when I sit here stuck and not moving forward – what is my motivation. Am I using sound minded discernment – am I waiting on HIM – or am I paralyzed with fear - holding onto something that defines the situation, but offers no solution.