Hi there!
I'm back at it!
If you previously read my blog "Frustration", you may be wanting an update on what is going on with the Coopsters.
Oh so many updates!
First
The dietician apparently has no idea what I was talking about, because after WEEKS of contact between myself, her, and the medical supply company, it was decided that the extension tubing that I was using, was what she said I needed.
SO all that turn around for literally the same product I had 7 of in my house,
Which by the way, didn't work for us for the longest time.
So we have made adjustments and just had to give Cooper more volume because of how thinned out the blended diet has to be to pass through this tube.
so, Yay? Can we classify this as a somewhat win?
Second
We have somewhat scheduled Cooper's scope.
We have it set for September 24th, but we don't have a time because we are still waiting on ENT to commit to joining the scope.
He wants to do it, but they are worried about scheduling conflicts so we will essentially find out if he is joining us the day before when they officially give us either the 8am slot (6 am check in) or push us to 10 (8 am check in).
This scope we will be using to see if Coconut, Chicken and Avocado are safe for him.
We were testing strawberry as well, but in the mix of everything going on, I forgot to add it to his tube mixture ( since he isn't eating them orally) and he needs it for 6 weeks consistently or it won't give us a definitive scope.
We talked with the allergist and he is ok with us starting strawberries and grapes as soon as we hear from GI that the scope is clean (if it is clean).
We don't see the allergist for over a month after the scope, and we wouldn't have enough time to get enough new foods in before the next scope is needed for it to be beneficially because you need to test out foods 2-4 weeks individually, then keep them going for at least 6 weeks before a scope so adding three foods would be a minimum of 10 weeks before we could schedule another one.
If we waited until after we see the allergist in the last week of October, that would only give us 6-7 weeks before we would need another scope(because of the holidays)
So that is at least good news about him allowing us to add more foods.
So FINGERS CROSSED that this scope is clean!
Third
Cooper is still FLAT OUT refusing to eat chicken and avocado orally.
Our feeding therapist is going to have us do an appointment where she and a coworker both work with Cooper to see if there is anything else they can think of to help get him to eat.
She doesn't know what else to do with him at this point.
We have been working with her since April and she is great.
Cooper on the other hand is so incredibly stubborn and scared to try these "new" foods.
So we will see what happens with that in a few weeks.
Our normal appointment time was switched for the month of September and the other therapist doesn't work the day we go now.
Fourth
Cooper is getting so big!!!
He is 27 lbs!
And he is....
wait for it...
DAY TIME POTTY TRAINED LIKE A BOSS!
He picked it up in 3 hours!
We still use diapers at nap time and night time.
He normally has a dry diaper during nap time though.
We won't attempt night time any time soon because there is absolutely ZERO chance of us being able to push his feeds with a smaller window of time than we are already struggling with now.
Most kids aren't allowed drinks after say, 6 pm so they don't wet the bed,
Cooper doesn't even finish his last feed until 7:45-8 on a good day.
So, yeah, NO way ;)
Fifth
Coopers appetite has been really low, like extremely low.
He barely drinks half of his daily formula and MAYBE eats 1/4 of a cup of foods through out the entire day.
He was on an appetite stimulant but it wasn't making a difference so after trying it two separate times, we decided to take him off of it.
We called the allergist and asked him if there was another brand or option and he said there wasn't one, which floored me.
How could there possibly not be any other options for him??
I was looking into other options, when our number 6 topic happened.
Six
Since we added in the additional blended diet, Cooper has thrown up quite a few times from the volume
(again, we have been making adjustments to fit it in)
The other day, he ate a handful of apple slices at 9:30 am.
That was the last solid intake he had had.
He threw up in his bed at nap time at 4:30 pm.
Sorry this next part is a little gross, but,
the apples were still in the same shape and chunks (barely chewed) sitting in the rest of the formula which he threw up.
That is concerning to still have food from 7 hours prior.
of course this happened on a Saturday, so we couldn't call until Monday.
When we called, the Doctor wants us to have another study done.
They want to do a Solids Gastric Emptying test to monitor how the food is being processed.
If food is sitting in his stomach longer than it should be, that could be the reason he isn't eating or hungry, along with his other GI issues.
So this test will let us know about that.
The problem with this test is that when they called to schedule and said, " ok so he will come in and it will be a 2 hour test where we will monitor how quickly/slowly the food moves through his stomach, he will eat the Rice Crispy Treat and we will monitor it"
I had to stop her because there are about 10 things Cooper has an allergen to in Rice Crispy Treats.
She said, "Ok, can he have oatmeal?"
Nope.
"Can he have eggs?"
Nope.
Those were his three options.
three things he has tested positive to.
So she said she would have to talk to the radiologist and find out what they could use in place of these based on the foods I told her he could have.
I mentioned all of them but said avocado and chicken are basically not going to happen, he refuses to eat them.
I also said I would call the allergist and find out what we can do if they don't have any other options.
She called back and said he could use chicken.
I told her again, he won't eat it. but the allergist said if there isn't any other options we can try the rice crispy at this point, which scares me because of how many things he is allergic to in there and after not having them for over a year, his symptoms might be different and his levels to them may also be as well.
But we will be in the safest place to try it, The hospital, so at least there is that.
We have this scheduled for September 28th.
Oh Cooper, how you keep our life interesting!
Refused to eat a single thing on that plate.
But he will pretend eat all day..
Oh so many updates!
First
The dietician apparently has no idea what I was talking about, because after WEEKS of contact between myself, her, and the medical supply company, it was decided that the extension tubing that I was using, was what she said I needed.
SO all that turn around for literally the same product I had 7 of in my house,
Which by the way, didn't work for us for the longest time.
So we have made adjustments and just had to give Cooper more volume because of how thinned out the blended diet has to be to pass through this tube.
so, Yay? Can we classify this as a somewhat win?
Second
We have somewhat scheduled Cooper's scope.
We have it set for September 24th, but we don't have a time because we are still waiting on ENT to commit to joining the scope.
He wants to do it, but they are worried about scheduling conflicts so we will essentially find out if he is joining us the day before when they officially give us either the 8am slot (6 am check in) or push us to 10 (8 am check in).
This scope we will be using to see if Coconut, Chicken and Avocado are safe for him.
We were testing strawberry as well, but in the mix of everything going on, I forgot to add it to his tube mixture ( since he isn't eating them orally) and he needs it for 6 weeks consistently or it won't give us a definitive scope.
We talked with the allergist and he is ok with us starting strawberries and grapes as soon as we hear from GI that the scope is clean (if it is clean).
We don't see the allergist for over a month after the scope, and we wouldn't have enough time to get enough new foods in before the next scope is needed for it to be beneficially because you need to test out foods 2-4 weeks individually, then keep them going for at least 6 weeks before a scope so adding three foods would be a minimum of 10 weeks before we could schedule another one.
If we waited until after we see the allergist in the last week of October, that would only give us 6-7 weeks before we would need another scope(because of the holidays)
So that is at least good news about him allowing us to add more foods.
So FINGERS CROSSED that this scope is clean!
Third
Cooper is still FLAT OUT refusing to eat chicken and avocado orally.
Our feeding therapist is going to have us do an appointment where she and a coworker both work with Cooper to see if there is anything else they can think of to help get him to eat.
She doesn't know what else to do with him at this point.
We have been working with her since April and she is great.
Cooper on the other hand is so incredibly stubborn and scared to try these "new" foods.
So we will see what happens with that in a few weeks.
Our normal appointment time was switched for the month of September and the other therapist doesn't work the day we go now.
Fourth
Cooper is getting so big!!!
He is 27 lbs!
And he is....
wait for it...
DAY TIME POTTY TRAINED LIKE A BOSS!
He picked it up in 3 hours!
We still use diapers at nap time and night time.
He normally has a dry diaper during nap time though.
We won't attempt night time any time soon because there is absolutely ZERO chance of us being able to push his feeds with a smaller window of time than we are already struggling with now.
Most kids aren't allowed drinks after say, 6 pm so they don't wet the bed,
Cooper doesn't even finish his last feed until 7:45-8 on a good day.
So, yeah, NO way ;)
Fifth
Coopers appetite has been really low, like extremely low.
He barely drinks half of his daily formula and MAYBE eats 1/4 of a cup of foods through out the entire day.
He was on an appetite stimulant but it wasn't making a difference so after trying it two separate times, we decided to take him off of it.
We called the allergist and asked him if there was another brand or option and he said there wasn't one, which floored me.
How could there possibly not be any other options for him??
I was looking into other options, when our number 6 topic happened.
Six
Since we added in the additional blended diet, Cooper has thrown up quite a few times from the volume
(again, we have been making adjustments to fit it in)
The other day, he ate a handful of apple slices at 9:30 am.
That was the last solid intake he had had.
He threw up in his bed at nap time at 4:30 pm.
Sorry this next part is a little gross, but,
the apples were still in the same shape and chunks (barely chewed) sitting in the rest of the formula which he threw up.
That is concerning to still have food from 7 hours prior.
of course this happened on a Saturday, so we couldn't call until Monday.
When we called, the Doctor wants us to have another study done.
They want to do a Solids Gastric Emptying test to monitor how the food is being processed.
If food is sitting in his stomach longer than it should be, that could be the reason he isn't eating or hungry, along with his other GI issues.
So this test will let us know about that.
The problem with this test is that when they called to schedule and said, " ok so he will come in and it will be a 2 hour test where we will monitor how quickly/slowly the food moves through his stomach, he will eat the Rice Crispy Treat and we will monitor it"
I had to stop her because there are about 10 things Cooper has an allergen to in Rice Crispy Treats.
She said, "Ok, can he have oatmeal?"
Nope.
"Can he have eggs?"
Nope.
Those were his three options.
three things he has tested positive to.
So she said she would have to talk to the radiologist and find out what they could use in place of these based on the foods I told her he could have.
I mentioned all of them but said avocado and chicken are basically not going to happen, he refuses to eat them.
I also said I would call the allergist and find out what we can do if they don't have any other options.
She called back and said he could use chicken.
I told her again, he won't eat it. but the allergist said if there isn't any other options we can try the rice crispy at this point, which scares me because of how many things he is allergic to in there and after not having them for over a year, his symptoms might be different and his levels to them may also be as well.
But we will be in the safest place to try it, The hospital, so at least there is that.
We have this scheduled for September 28th.
Oh Cooper, how you keep our life interesting!
Our friend Brianna snapped this when we hung out with her and her adorable son, Hudson, and a few other friends and their kids <3
The morning I tried to make him a cute breakfast, which he barely ate, and then threw up any way :(
STOP GROWING, NOW
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