Tuesday, August 20, 2013

Scopes: Caleb

Last month, Caleb and Russell both had endoscopies.  On the same day.  Boy was that fun.  Russell also had a sigmoidoscopy again (which is like a mini colonoscopy).  Both looked perfect to the naked eye--no redness, nice and smooth, etc.  That's pretty normal for people with lower EGIDS (aka, the disease is in the stomach, small bowel, or colon--not in the esophagus).

He was really, really excited about the toy cars at the hospital.

All drugged up and ready to go to the OR!

The biopsies are where the real results are seen.  We were pretty nervous about Caleb's results.  A few times the week before, Caleb had told us, "I ate too much and now my tummy hurts," and that was after eating no more than a few bites.  He has also been burning out with his oral eating.  He can no longer eat enough to gain weight, so we've had to increase his tube feedings by quite a bit.  It's awful having to do that.  He's used to the routine of having to eat, so he asks for food but then he won't eat it because he's just not as hungry.  But his health is more important than his oral skills, so we've had to lower our expectations when it comes to actually ingesting food of his own accord.  We just can't have it all, I guess.  (Side note: since starting to increase his tube feedings again, we've been giving him 5 ml of coconut oil 2-3x daily, and it has really helped him gain weight!  He's up to 26lbs 11oz now, which is a great improvement for him!)

So, we were nervous about Caleb's biopsies, but they came back clean!!  YAY!  No eosinophils!  If he had been reacting to any of the foods that he's been eating, it would have been a really big mystery trying to figure out what food to remove from his diet.  We were so relieved that he can keep his foods, and that we can trial a new food!  So he can now have anything except: dairy, soy, eggs, peanuts, tree nuts, fish, and shellfish.  We're trialing wheat, and so far so good.  It usually takes him at least a month before we see concrete signs of a food reaction (vomiting, complete food refusal), so for now we'll just enjoy crackers and pretzels and tomato soup and new cereals and bread and cake and cookies.  :D  The other day we made my favorite kind of chocolate cake, without any substitutions!  It was incredible!

Helping me make a celebratory cake.
If there is any question as to whether or not he's reacting to wheat, we'll have him scoped again.  But if two or three months from now, we still can't tell if he's reacting or not, he'll have another scope.  Which would work out perfectly, because we've met our out of pocket max for the year and any surgeries from here on out are free.  ;)

Hooray for hot dog buns!
Hooray for toast and jam and cinnamon toast!  (I used coconut oil to substitute for butter.)

So, wish us luck!  How awesome would it be if Caleb could end up having everything except for dairy and soy (which we already know he reacts to, so we don't expect that he'll ever be able to have them again)?  That just sounds like a dream come true, compared to where we've been!  It's always possible that he could develop a reaction to something he's not currently reacting to, or that he'll stop reacting to something that he used to react to, or that he's not currently eating enough of something that he would react to (like celery or quinoa or oatmeal, which he has only had a few times), so we still have to be very aware of what he's eating, but this is a giant, huge, awesome step in the right direction!

 We had a little pretzel and cracker party with our best friends on the day that we got the good news.

 Eating some yummy wheat cake!  He actually didn't like the cake much, but he was a big fan of the frosting.

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