Friday, June 26, 2015

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.

**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

**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!!


Thursday, June 25, 2015

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!

Sooo...

Hey there, remember me??
The girls who used to write this blog, but has been pretty MIA recently?

It's not your imagination, 
It's really me!
I'm back after a few busy months, and will be working at posting more frequently again!

See you next post!