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!

I still can't get my pictures to upload

I am beyond irritated that I can't get my pictures to load.

My phone won't connect to my passport on Jeff's computer,

There is no way to save them because we don't have any space on the computers.

I have no way of moving pictures I have saved and edited in iPhoto to the passport for some reason, and I cant access them from this site! 

I. AM. SO. IRRITATED.

The only way it works right now is if I individually upload from my app every single picture from my phone, which takes forever!!

I will keep working at it so I can start updating again!

Thanks for continuing to check in, and I promise to have some new posts up soon!

Because I never want to forget this night

Since December, when I feel in love with "Lost Stars" by Adam Levine, I have used it as Cooper's nighttime song. 

Tonight, Cooper sang it to me while we lay on the floor in his room, on our backs, him laying on his back on top of me. 

He doesn't know all the words, and he didn't get the notes right the whole time, but he sang a long and it was the most incredible thing ever. 

And in true 2 year old fashion, he transitioned mid song into the "itsy bitsy spider", then back. 

My heart is so happy tonight. 

I love you little bug. 

Lost Stars music video

ONE YEAR!!

On June 24th, this blog turned one!

I haven't been as consistent as I had planned, but I am glad I have the entries that I have!

I have a record of all that has happened in the medical world that is Cooper.

I have memories from birthdays, holidays, weddings.

I have medical scares recorded for the next time something happens that I can look back to see if it is something I can take care of on my own.

I have memories of my one and a half  year old, growing into a 2 and a half year old ( ALMOST).

I have officially posted 101 blog posts of memories I will treasure forever.

(10 more if I could get my dang pictures to load!)

Here is to more memories!

Enigma

Oh Cooper.

My little enigma.

So, Cooper is quite the puzzle.

I am going to start out with some stats.

Laryngomalacia:

Is the most frequent cause of noisy breathing (stridor) in infants and children. It is the most common congenital anomaly or birth defect of the voice box or larynx.

About 99% of infants with Laryngomalacia have mild or moderate cases.

Only 1% of infants have severe Laryngomalacia, and usually need surgery.

as per the Children's Hospital at Vanderbilt

**Cooper's Laryngomalacia is in the 1 percentile **

Eosinophilic Esophagitus:

Has the lowest prevalence in the allergic disease family

It is currently 1 in 2000 persons, which has increased drastically over the last 10 years

as per APFED

**Cooper is in the .0005% of people with EOE **

Intestinal Malrotation:

It is somewhat common that a baby is born with intestinal malrotation.
It happens in about 1 in 500 births in the U.S.
Many people can go through life never having a problem with it.
Malrotation itself isn't much of a concern, it's that the malrotation then can lead to other serious complications :
 - intestinal obstruction
(Ladd's bands create blockage that causes intestine not to function)
-volvulus (What Cooper had)
 (intestine twists in on itself, potentially cutting off blood supply)

as per Boston Children's Hospital

**Cooper is in the .002% of people who have a malrotaion,
and from there, the exact percentile for having a volvulus is unknown**

So.
Cooper is an enigma.
And "technically" speaking, GI- wise, Cooper is a mess.

What started me on this post, was our visit to the ENT this week.
We saw him because Cooper still has a bit of residual Laryngomalacia and it is especially bad when he sleeps.
We just wanted to make sure everything was on the up and up since it should have gone away by 18 months, and with all that we have been dealing with, we wanted to make sure he was good.

The last time we saw ENT, was because Cooper aspirated apple last year.
We wanted him to be checked to make sure he didn't choke or anything.
He was fine, but the Doctor did say he was still a bit raspy, but that he didn't want to go near it unless he knew 100% that that was the reason causing Cooper's feeding problems and lack of weight gain/weight loss.
He then sent us to the allergist, which launched us into the EOE and feeding tube world.

When we saw him he asked what was new and we told him and he just sort of stared at us after saying, "wow".
Then he asked if now that we have more playing parts if GI has been able to put things together between all of the issues.
Or if there was a connection? Because they are all such uncommon things.
He was curious if they were able to figure out which issue was the worst, or causing him to not eat.
He was literally baffled by all the things Cooper has, and is really interested in what we find out, which is funny, considering he was one of the 2 doctors that didn't believe me when I said how bad Cooper's issues were before his surgeries at 2 months old, before he scoped him.
He would like to scope him or be involved when we do the scope for Allergy with our GI doctor, in a few months, and see what is going on and make sure everything is ok, but Cooper sounded good to him at the time.
He is concerned, however, that when Cooper sleeps, he sounds like he used to .
He said sometimes these things can lead to Sleep apnea related issues (GRRREAAATTT...)
He wants us to keep an eye on that and call him if it gets worse.

Even though Cooper has a bunch of uncommon things, and it was hell to figure them out and deal with/treat/fix them, he is still the greatest tiny human on the planet, and I wouldn't change a single thing.

So thank you Cooper, for baffling the Doctor and proving me right <3

Allergist Update!

We saw the allergist last month and it didn't go as well as we hoped.

Cooper refused to eat the foods we were trying to trial,

and we had only officially fully trialed one food in 3 months. 

Typically they hope to have at least 3 in that time frame.

So at the time, his safe foods were: 

Apples,

carrots,

bananas,

and white potatoes.

We fully trialed coconut and that is safe for him

 (as far as no symptoms, when he has trialed more foods, we will scope to know for sure), 

but that is all we were able to do since he wasn't interested in the other foods he could have.

He was trialing avocado, but he didn't want to eat it and we have been working on it in feeding therapy.

You need at least one to three serving per day of a food, for at least 2 weeks (3-4 in Cooper's case) to check for symptoms, to fully trial a food. 

The way things were going, he wasn't getting that amount.

Which is frustrating because if he refuses to eat it, you can't move on and say he passed it or not until he does.

The issues with Cooper in general, trialing foods and Feeding therapy are that:

1. He has had the same foods for 10 months, and now that he is getting older he knows which foods are safe for him and he recognizes them, and anything new scares him.

2. He doesn't like medium textures. He only likes liquid state, like applesauce, or hard state, like chips and carrots.

3. He is a 2 year old, which brings a whole other difficulty to the problem.

4. He doesn't have an appetite because he gets all of his calories for the day in the form of formula, per the Doctors instructions.

So when we went in and talked to the doctor, we decided to try a different approach this time.

We are going to continue trialing avocado.

but we will also be adding strawberries and....

Wait for it...

CHICKEN!!!!

WOOT WOOT!

As exciting as that is, we still won't be able to order plain chicken breasts when we are at restaurants because of additives in mass purchased chicken. 

A lot of meats are injected with dairy and other things Cooper can't have, so we have to buy natural, organic, non injected chicken and we have to check the labels.

And there is also the issue of him refusing to eat that as well because of the texture and because it is new...

If cooper doesn't want to eat the foods, we will blend them with liquid to do a blended bolus feed.

That kind of worries me, because when we were introducing coconut, we put a small amount of coconut oil in his tube a few times.

He didn't tolerate that well and as Cooper would say, he "spilled it".

There also is the issue that if I am adding more foods in liquid form to Cooper's tube, he won't be able to get his total volume from formula for the day, because he can't tolerate more than the 32 oz he has a day.

We are working at getting these foods trialed and getting a scope done in the next few months, as well as adjusting his calories and replacing some of them with the blended diet so we can trial foods and move on.

We are also working on getting him to eat the new foods orally in feeding therapy, because the whole point of adding solids is to eventually get the tube taken out. 

 IF, and that is a big "if", there are enough safe foods for him to eat, to be able to grow without needing formula or without using the tube, we can work towards eventually having it removed in the future.

So little man, 

let's kick this food trial's butt!!

My plan was..

So my plan this evening was to blog about a few things and update some posts,

but my computer isn't connecting to my phone, so I can't upload any pictures!

And that is the best part!!

So you will have to wait a while longer for a new update!

I'll write them out and get them ready for post, minus the pictures, and when I get them connecting, I will upload and post!

Until next post everyone!