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)
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
**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
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