Wednesday, January 19, 2011

I Am Asking Lord

Sometimes this FPIES roller coaster has just too many curves. Nothing outrageous is happening – that’s not it. It is just so difficult at times to even know what to do next. The kids have been cleared to trail a new food for a week and we haven’t been able to start a trial because we just don’t know quite where to go at the moment.

GAPS diet, CHOP’s suggested food, intuition… I feel like we may as well flip a coin!

On the up side we did try “muscle testing” which gave us a list of foods to avoid and a list of foods to consider. The only problem is that it is not 100% - and completely new (and untrusted) to us. The procedure is actually called Applied Kinesiology, and was recommended to us by the kid’s primary doc (who we love). I fondly refer to it as “hocus pocus,” and there are many out there who say it is just that. If you search it on the net you will find it called “quackery” among other things. Here's the thing; first, I trust our doctor and second, WHAT ELSE DO WE HAVE TO GO ON!!! I did speak to a woman who had been doing the immunotherapy that the kids also do – she also uses this “muscle testing.” She warned that while a “no is really a no, a yes is really a maybe.” So we tried it and will utilize the results – we’ll see if they prove useful.

One option is to trial rare and exotic foods – starting with exotic meats as a healing (joints and marrow) broth. I am very interested in the logic and science behind this (GAPS diet & LDA expertise), but I am overwhelmed by the logistics of pulling it off. At this point I feel like just trialing grass-fed beef since it is so easily procured here in central PA. Then there is Emu. I can find this in a small amount for a 10 day trial, but then would have to have it shipped if it was a pass (until this summer when the local farmer is ready to butcher again). This is overwhelming.

At the same time that I am AGONIZING over making the decision, I am troubled by the fact that we are just standing still. I am also troubled by the feeling that we are holding BabyM back. I think she is much more ready for food than her brother. This presents a difficult dichotomy for me – both emotionally and practically.

These kids just want
to EAT. BabyR is refusing just about every “bottle” lately. Yesterday he only took 6.5 ounces ALL DAY. I am not kidding. He should be taking at least THIRTY-FIVE! I went in shortly after he fell asleep and fed him (we usually only do this around 11 pm) – he took all 8 ounces – so I just can’t figure out what is going on there. Is this behavioral? Is he sick? I really don’t know. I do know that he still has his “feeding tube follow-up” on the 9th. This kid has 21 days to pack on the pounds like his sister did. Now to just get him to take his formula, and maybe get an additional food in his menu.

I hate the moments when I feel at a loss for direction. At this moment our medical team is telling me to make the decision (I love our team – they trust a mother’s instincts and knowledge). I am just feeling a little stuck – maybe fearful or inadequate (to make the decision).

I know that the HE has promised to give wisdom to those who ask. I am asking Lord.

James 1:5
But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.


  1. He formed them....He knows them...He has a future and a HOPE for them....hang in there. These adjustments are so overwhelming when society is catering to the opposite. But isnt that what we are called to be? opposites? ;) I just really had no idea it even had to be here. In food. Must be what it felt like B.C.

  2. Nichole,
    You have been chosen to do what only God can do through you. There is much unknown about this problem, God needs an advocate who is willing to defy all the odds and go to bat for information that most people have no clue where to view. Ask God what path He is directing you to. Let God know you are available to do His will for many who suffer needlessly. God will reveal the mysteries on the unknown to someone who belongs to Him and noone else.You are chosen to be His hands, ears and mouth. You have been chosen because He can entrust you with His mysteries. You will stand in the gap for many, unselfishly. A Mother's heart is a terrible thing to waste.It carries such a depth that is unbeknownst to all.The children have been entrusted to your care, it is no mistake, nor is it a surprise to God they have this problem. He awaits for you to ask Him for His wisdom and understanding, then walk without fear into the unknown, but known to God. This is your destiny, your calling. The problem is temporal, but, the work that needs to be done is not. It is progressive knowledge and one in which only God carries. God Bless

  3. Thank you to the above msg. My son was just diagnosed with FPIES just before Christmas at 9.5 months. We have been looking for answers since he was 4.5 months. I too like you Nichole am very scared at where to start. I have just started reading your blog....... and am also calling on the Lord. Thank you for the encouragement :) I'll pray for you as well.

  4. God is good - he has been with us through this entire ordeal. He has proven himself again and again. Rest in him and lean on him. Have you found your way to the support forums for FPIES? There are a few other ladies with a strong faith and many more for general support. Hang in there.