FRUSTRATION

SO

MUCH

FRUSTRATION

As you all know, Cooper's allergies are extensive, and the doctors decided on an elimination diet and slowly adding in a few things at a time, then scope and see that he is handling the new foods and isn't allergic.

When I discuss what Cooper can eat with people, whether it be friends we don't see often, non immediate family, or new people I am starting to get to know, I usually get the same reactions.

Me: Cooper can only eat white potatoes, carrots, apples, bananas, and we are trialing coconut, strawberries, avocado, and chicken*

Person telling this to: oh, ok.

Me: (gets out foods cooper can eat)

Person telling this to: (takes out food for themselves or kids)

Both: (eat a bit, then usually a child offers Cooper a food on their plate, or Cooper asks for something on their plate- which he would never eat anyways- )

Person telling this to: can he have (insert food here)?

Me: No, he literally can only have those foods.

A lot of people don't understand that Cooper seriously cannot eat anything other than the foods he has trialed in the past and scoped clear for, as well as the current foods we are trialing.

We can't give him anything other than those because

1. We don't want to accidentally give him something he is allergic to

2. We need clean scopes, and if anything else is added even once, it will adjust his eosinophilic count and we wouldn't know if it was one of the three foods we added, or something he has had outside of the diet.

The best comparison I can think of is, remember back in school when you would be doing controlled science experiments and you couldn't adjust or contaminate the materials or it would adjust the outcome?

In a sense, Cooper is the controlled experiment,  and we have to test with controlled variable or we won't know what caused the negative outcome on the scopes if he fails the scope because his eosinophilic count is elevated.

Now, let me break his food categories down a little better.

The ONLY foods Cooper can have that we know are not an allergen, and I mean ONLY 

are:

-White potatoes

-Carrots,

-Apples

-and banana

(these 4 were tested with a scope and he passed with an eosinophilic count of 1!)

We successfully trialed:

 (as in haven't had any signs of allergies, but haven't scoped)

-coconut

We are currently trialing:

(trying to get him to eat one serving a day of each food for 6 weeks to see if there is a reaction and then scope)

-avocado

-strawberries

- chicken* 

*(cage free, vegetarian fed, non injected with hormones or antibiotics)

We can add spices as long as they don't have things we know he is allergic to (we cant give him things that have say, tomato, in a seasoning mixture)

We keep that very minimum because he isn't interested anyway, and it's less things to add to the mixture.

We have to check labels on EVERYTHING.

We usually have foods packed for the day when we leave, or we make sure we go someplace where we can get raw foods for him because we can't order anything at restaurants that have been cooked at this point.

So, here are the variations of the foods Cooper can have.

Apples: applesauce( if labels are safe), raw apples, cooked apples, apple juice (if label is safe), dehydrated apple chips (if label is safe)

Carrots: raw, cooked, fried in coconut oil

Bananas: raw, mashed into a paste, frozen, banana chips (if labels are clean)

White potatoes: raw, cooked, baked in safe oil, potato starch, lays or natural potato chips that are cooled in a clean oil and the label is safe- we found an awesome brand of potato chips that are cooked in either coconut oil and salt, or avocado oil and salt, and it's a safe label so we use those!

Strawberries: raw strawberries, homemade strawberry jam

Coconut: raw, water, coconut milk (safe label), coconut flour, coconut chips and strips(if safe label)

avocado: oil, pure avocado

Chicken: cage free, vegetarian fed, non antibiotic or hormone injected chicken.

When I say clean or safe label, that means the product doesn't contain anything else other than the foods he can have, and isn't produced in a factory where there can be cross contamination with allergens.

We also use stevia, and raw cacao powder on occasion,

as well as DumDums, because they are a food group for EOE kids. 

They are completely artificially made so its sugar and artificial flavors so there aren't any of the proteins from foods, which is where the allergens come from.

So, 

Here are some of the frustrations we are dealing with.

We are trying to schedule a scope that is coordinating with our GI and the ENT who is interested in checking out the residual Lyrangomalacia Cooper has.

Both wanted to scope, so we are trying to avoid putting him under twice if we can help it 

(we think end of September will work)

We are also going to see if while he is out, if GI can do his button change instead of seeing the surgeon and having him awake for it, since it traumatizes him.

We have hit Cooper's out of pocket expenses for insurance, so we need to make sure we get at least two scopes in before the end of the year, so we won't have to pay for them.

But the scoping can't be done (can but they don't like to) more than every 3 months, so if the end of September is the only time that works for the schedules, we may not be able to get a second one in before January since we don't have a 3 month window. 

We are discussing that with the doctor to see if this will be ok.

We are also having the issue of getting Cooper to eat orally.

Which has ALWAYS been an issue, but now that we are introducing new foods (avocado and chicken*) he is SO FREAKING RESISTANT.

He REFUSES to eat them.

And it is wearing on us.

So much.

One of the most tiring and frustrating thing I have dealt with is trying to get him to eat.

We are working with his feeding therapist to get him to eat, but it has been 11 sessions so far, and because of how limited his diet is, it is extremely difficult for her to make an impact.

 In order for this to be totally successful, they need a variety of foods, textures, and temperatures to break through food refusal.

Since his food list is so limited, that isn't really an option.

We don't know if he just doesn't like the new textures or flavors, if he is so used to the foods he can have that everything new is perceived as unsafe so he is unwilling to try it, or if he is just being a two year old.

Honestly we think it is a combination of the three.

What I remember reading when I was pregnant, about the first years, was the biggest thing NEVER to do, is to start giving them the same foods. 

They need variety or you are going to have huge issues in the future because they won't want to eat anything else.

I made sure to do that in the beginning, but now we don't have a choice, so we are stuck.

In feeding therapy we have gotten Cooper to lick and rocket (put a piece in his mouth and spit it back out) the new foods, but for the life of him, he will not eat it or swallow it.

So it's disheartening and frustrating.

Here is where more issues come into play.

We need to get these new foods in, and since he won't eat them orally, we need to do a blended diet through the tube,

which takes away from eating orally, and puts us further behind, as well as adding more liquid and items through his tube which makes him throw up if he has too much, and since we are already still having issues with getting in the normal 32 oz of formula a day with his nap and bedtime and when he wakes up, you can see our dilemma.

Now, let's add in another factor.

We don't have the right extension tubing to do the blended diet and the dietician who sent the order says it exists, but the insurance company that sends our supplies says it doesn't.

So for two weeks we have been going back and forth with MULTIPLE phone calls with HOURS (not exaggerating) on hold and being transferred.

We are supposed to get the one they are sending that they had to contact the distributer for, delivered tomorrow, and I'm about 99% positive that they aren't going to be the right extension.

I think our dietician and I are on the same page when I told her what we have at home and she keeps saying that isn't what is needed, but the company doesn't seem to know what it is.

So we cant get any foods in him until we get that.

We tried with the bolus attachment that come with the new button, but there was so much pressure and push back when we were pushing the blend through that we stopped because we didn't want to rupture anything.

So, life hasn't been the easiest recently, and it's really been wearing on us emotionally.
It is hard on him too because he gets frustrated that we won't let up, and it is also out of his comfort zone.

We want so badly for Cooper to be able to eat more things and we want to help him succeed.

It's heartbreaking as a parent to not be able to do those things for the tiny human you created and love so much.

But we keep going, one step at a time, and hopefully one day, we will be closer to that.

Until then, I'm just going to enjoy every day with this cute little bug!