Latest Update on Cooper

Tuesday was a VERY busy day!

We saw Cooper's Gastroenterology (GI) doctor and his Allergist!

These were both three month follow ups.

The last time we saw GI, we had Coopers endoscopy done.

You can check those posts out right here and here!

So our concerns going back in were weight gain, and seeing if the appetite stimulant worked.
When we got Cooper in there his measurements were:
33.25 inches tall
and 21.925 lbs.
So in three months he gained a little over 1 lb.
Not good.

Somehow the numbers were mixed up in the system and they had Cooper at the 6th percentile after being at the 3rd percentile last time.
WRONG!!
We kept saying, "that doesn't sound right, I checked his weight on the chart last night and he was riding under the 3rd%"
but the doctor said he was at the 6th.
He said he wasn't concerned with his weight gain as much because he doubled his percentile ( again, WRONG).
He was ready to dismiss him but we had more questions.
We said he has gained a little over 1 lb in 3 months. And the weight gain isn't from formula or healthy fats. Its from him eating a majority of potato chips and fruit snacks.

I had a list of the foods he had eaten in the last week. A daily journal of what he was eating.
The doctor called in the nutritionist so we could see what was going on.
Our concern was that he gained most of that weight right away when we were letting him eat chips straight out of the bag, then he plateaued and didn't gain any more weight ( we have been weighing him at home to keep track).
We asked what are we supposed to do because he is not getting his daily intake of calories, especially from his bottles, he doesn't want to eat/drink, and we can't force him.
The biggest issue with this is that without healthy calories and nutrition, he isn't growing, his brain can't develop, and his height will be affected. All of these things are determined by the time children are 2 (which is in a month and a half for Cooper). This was a huge concern for the doctor the last time, but not this time since he thought his weight gain was up, so we pushed for more answers.
As any mother knows, it is hard to get nutrition in to toddlers!
But when your child has an extremely limited food source pool, and doesn't want to eat, there aren't many options on how to get those nutrients in.
My mother-in-law (who has been a nurse for quite a few years) and I have discussed talking to the doctors about a feeding tube for when he doesn't want to eat to ensure he gets the nutrition.
I'm not one to push for things I don't think are necessary.
At this point, Cooper is not getting the nutrition he needs to grow on his own, so I think it is time to take a more serious step then the doctors have been taking.
His growth has been consistently like this.
He barely eats.
He has eaten like this since he started solids almost a year and a half ago.
This isn't a new stage for him.
This is his every day life
and you bet your bottom dollar I am going to do everything in my power to make sure he is as healthy as he can be, and every option is looked in to.

The doctor put us in contact with a surgeon who specializes in G-tubes, and he wants us to get a consult to discuss it.
We also bumped Coopers formula from 24 to 28 calories per ounce.
They want to ensure he gets 950 Calories a day, 500 of which are from formula.
Which is NOT going well.
(He averages 300-600 calories a day from solids and bottles)
We have a weight check in a month to see if anything changes...

After we saw GI, we went to the allergist.
This was a follow up from the last time we were there 3 months ago and found out all the allergens he has.

To read about that check right here and here!

When they weighed Cooper, (fully clothed with an unchanged diaper) he weighed in at 22.8 lbs.
with that weight, the Allergist told us Coopers weight is well below the 5th percentile. He is weighing in along the 2nd percentile. (which is what we had him at and told GI he was at).
We discussed with him what we discussed with GI, and he agreed with the approach we were taking.
He said we could add more foods to Coopers diet (banana, grapes and pears), which had us SUPER confused since we aren't having another endoscopy done until January due to our insurance.

When we saw the allergist last, we were told we could only give Cooper white potatoes, carrots, apples, fruit snack and formula until we did another Endoscopy to see if his eosinophil count was down to a normal range without the allergen foods. We were supposed to see the results before adding in more foods.
So the fact that we don't know if these foods are ok for him to eat, and they were ok with adding more foods in, had us completely confused.
Also, WHY IN THE WORLD have we ONLY been able to give him those few things for the past three months if we didn't need to check before adding more foods!?
Although I guess the more accurate question is,
WHY IN THE WORLD ARE THEY NOT BEING MORE CAUTIOUS WITH COOPER WHO PROVES TO BE THE MOST DIFFICULT BABY TO FIGURE OUT!?
At this point in the appointment, Cooper had had enough. He didn't get a nap and he was DONE.
So I was a little frazzled and we left the appointment without fully discussing why we were adding more foods.

Since both doctors appointments had misinformation, or questioning information,
Wednesday was a day for calling these doctors' nurses to ensure we were taking the right approach.

We called GI and said we had had concerns during the appointment, that the weight percentile the doctor was reading his information from was incorrect.  We told her that concern was confirmed when we went to the allergist 2 hours after that appointment.  We informed her that we wanted to make sure the GI doctor wanted to proceed the same way, now that he knows the correct percentile. Since he wasn't concerned with the rate he was gaining weight because he had misinformation, we wanted to make sure he didn't want to change anything now that the percentile was actually down one, instead of doubled.
They called back after talking to the doctor, and told us he wants us to make the next appointment available with the G-tube surgeon to get that rolling.

Then we called the allergist, expressing our concern of why we were adding more foods without doing the endoscopy first, and the nurse was really confused by what we were asking! So after she finally understood, we waited for the call back.

When she did call back, she told us he was ok with us continuing the same 5 foods we had been giving him until the next endoscopy, or we could add those three new ones, but it was up to us...
So yeah..
Still don't understand why the heck we would be able to add more foods before we do another endoscopy, considering that would tell us if any of the foods he was eating were ones he was allergic to.
Usually with Eosinophilic Esophagitis,
they give you three foods to try for 3 months, do an endoscopy (biopsy of the esophagus) to test the eosinophilic count to see if any of those foods are ones the child has an unknown allergy of since they don't test every single food on the skin or blood allergy test.
That way, if they do show a high count, there are only three items in the diet to take out one at a time to determine which one it is, instead of having say 8 things and having no idea which one is the allergen.
If the count is in the normal range, you would know those foods were safe, and you could add another set of three for 3 months and do another endoscopy and continue that pattern.
So that is why we were MAJORLY confused!

So basically, we are moving along in this process with, yet again, not really gaining any more information at this point.
However, we do have a bunch more appointments coming up!
YAY...?

Here are our next appointments!

December 19th- Consult for a G-tube (feeding tube) with surgeon.
January 9th- Weight check with GI to see if Cooper has gained any more weight.
January 26th- Endoscopy to find out if the foods he is eating are allergens or not.
February 16th- Follow up after Endoscopy to see results and hopefully add more foods if eosinophilic count is normal

It's a good thing Cooper is so dang cute...
Because the stress level he is inducing on his mama would not be so welcomed if he weren't
;)