I am the mother to twin children who HAD FPIES - Food Protein Induced Enterocolitis Syndrome. Their condition prevented them from eating food. They used to survive with Nutramigen AA, a prescription medical formula...that was before we found the GAPS healing diet....and that was before Divine Healing! Today...no foods are off limits! This is the story of God(the Father) working it all out! To Him ALL the glory.
Monday, July 18, 2011
The papu (as LittleM named it) was a soothing mechanism, and an added layer of protection from eliciting an FPIES reaction to God only knows what the twins might put in their mouths. For me it was more than that though. For me the papu has been one thing that I don’t have to deny them. Imagine the emotional tie I have had to it since it has been one of the only things that I could LET them put into their mouths. It has gone right in line with my theory that while dads are created to provide and protect, moms are made to nurture and nourish. In a strange way the papu has met both of these desires in me, but it was not until today that I could put that into words.
Over that last few weeks Shawn and I have been talking about the need to get rid of the papus. It certainly makes it easier to think about since the kids have a dozen or so foods that they can eat. This is not the main reason we are pushing forward with the task though. Cute as it may be both LittleM and LittleR have developed papu-speech. At one point LittleR actually developed a lateral list. Put your thumb on the roof of your mouth and say “church.” Yup that is how he sounded – only worse. Although out OT told us that there was no way to work on this until three years old we began working with LittleR and the lisp is pretty much gone. In the last week or so LittleR started saying things like, “look, I see a big, big twuck!” While LittleM spits out the same “r” sound; “let me twy it.”
Yikes. Time to make a change.
Today I was out for groceries with the twins. As we pulled out of Wegman’s, I decided to make a stop at the thrift store across the street. I made a passing request to the Lord as I parked the car; “Ok Lord, you know we need to get this done.” I went inside and made my way to the back of the store to sift through the children’s books. Right there on the top of the bin was a copy of Little Bunny’s Pacifier Plan in great condition. Wow. This was a long shot really – such a specific type of book and there it was. I flipped through the pages and quickly discerned that the “plan” was for Little Bunny to give his pacifier to a new baby. I was not real thrilled with this “cold turkey” approach and dug through every last book in the bin in search of a better plan. Who wants to deal with the fallout from taking twin 2-year-old’s pacifiers away in one fail swoop? I sure don’t, but more than that, I didn’t want to put them through that. I know that my emotional ties to food and their inability to eat like other kids is stronger than theirs, but I also know that I have no idea what is going on in their little minds. I have no idea how one is related to the other – for them.
Still, I said, “ok God.” I bought the book. Before nap time I began telling the kids that we were going to give their papus to a new baby soon. They seemed ok with the idea though they obviously have no idea what that would mean for them. We all sat down on the couch to read the new book. I figured there was no reason to hold off the indoctrination of the papu plan. As I read the book to the kids my eyes welled up with tears. I let out a quiet laugh – just between me and God. He never ceases to amaze me. I am always so surprised at how he cares for even the little things.
The Papu Plan
Step One: My little bunnies can only have their papus inside house
Step Two: My little bunnies can only have their papus in their bedrooms
Step Three: My Little bunnies can only have their papus on the papu chair (in their bedrooms)
Step Four: My little bunnies pack their papus away in their closets
Step Five: LittleM and LittleR wrap their papus to give to a new baby as a present
And he is jealous for me, loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy
When all of a sudden I am unaware of these afflictions
Eclipsed by glory and I realize just how beautiful You are
And how great Your affections are for me
And oh, how He loves us, oh
Oh, how He loves us, how He loves us all.
John Mark McMillan
Wednesday, July 6, 2011
The New Plan
There has been a new turn of event in our little house. After some thoughtful deliberations we have decided to begin family dinners. Shawn and I discussed the “sacrifice” of a fairly boring diet as it complements our desire and ability to begin eating meals together as a family (while still limiting LittleM and LittleR’s exposure to foods that they cannot have). Honestly as we thought about what our menu would look like; it became clear that this was a “no-brainer.”
Up until now we have made sure that the kids ONLY consume grass-fed meats (they have reacted to soy-fed poultry; corn fed poultry is questionable), but as for Shawn and I all bets-were-off. We generally eat grass-fed beef, but everything else has been conventional due to the increased costs of quality meat.
Over the past couple of months that the kids have been able to eat multiple foods, we have cooked them dinner in the evening. I would pull meat off of the bone in their bone broth and then boil a 2 or 3 vegetable to go with it. Then I would have to cook dinner for Shawn and me once the kids were in bed. Many night we wouldn’t eat until 9pm. When I talk about not having time to get things done I have not been kidding. After cooking and eating dinner and clean-up we finally finish the night off at or after 10pm. This has been exhausting, but worth it. The relationship the kids have with food is worth it. The fact that they have NO idea they are denied such a large part of a normal life…they have just not felt the sting of this in their short little lives. This has been worth it. But wow – I am tired!
The New Plan:
Tonight will be the 3rd night of family dinner! WOOOHOOOO! When I say family dinner I am talking about the four of us eating the same thing…well at least to the same extent as any “normal” family. In many families the kids plates don’t look exactly like the adults simply because the kids don’t like certain foods – right?
Well, we will have to cook dinners that are very simple and pure. Shawn and I will still use different sauces and marinades that will not be on the kid’s foods, BUT I am preparing these from scratch with ingredients that are allowed on the protocol that we are doing with them. The idea is that down the road when they are allowed to have the ingredients we will be able to build meals that are EXACTLY the same. There are certain things that I will continue to cook for Shawn and I that the kids cannot have, but we will limit their exposure to these foods in simple ways – like positioning the plate with these foods out of sight or reach. I am not worried about them seeing these foods – to the contrary – I think seeing other pure foods that they may be able to have in the future is good for them. My goal is really for us to be eating very similar meals – TOGETHER!
Yesterday for the first time EVER LittleM and LittleR were allowed to eat off Mommy and Daddy’s plates. I just really cannot describe the feeling.
Thank you God.
The Food: Theirs/Ours
July 4th - Day 1
Dippy Meat (meat with pureed carrot “sauce”) / BBQ Chicken
Boiled Zucchini Sticks / Seasoned Grilled Zucchini
Boiled “Cole Slaw” / Honey Raisin Cole Slaw
One bite of lettuce (No harm here they won’t swallow it yet!) / Salad
July 5th – Day 2
Boiled Garlic & Ginger Salmon / Grilled Garlic & Ginger Salmon
Carrot “Fries” / Sweet Potato Grill Fries
Boiled Broccoli / Boiled Brocolli
Tonight’s Menu
Boiled Mini-Hamburgers / Grilled Hamburgers (no bun)
Boiled Sliced Onions / Fried Onions
Butternut Squash Puree / Honey Grilled Butternut Squash
Boiled Peas / Boiled Peas