Friday, May 30, 2014

Caleb at 4.5 (and oral eating/reduced tube feedings)

Caleb has been in the middle of a big change for the past few weeks.  He was doing so poorly with oral eating.  He would get a nasty look on his face just by looking at his food.  We knew we needed to intervene if we wanted him to keep the physical ability to eat and not become even more averse to food.  His weight was doing better than ever (in the 3rd percentile!!!!!), so we decided to decrease his tube feedings by over 60 percent.  Instead of giving him a minimum of 30oz of formula a day, we are only giving him 8oz of formula and at least 12oz of water through his tube.  We knew he would lose weight, but at this point we felt confident that we could get him to gain it back by increasing his tube feedings if his weight loss was just too great.  I even researched a few tube-weaning sites for tips and what to expect, even though I don't expect him to fully wean from his tube at this time.  

The first few days were rough.  He dropped a lot of weight pretty quickly (about a pound).  He was super cranky (hangry, anyone?).  I'm pretty sure he just didn't know what to do with that hungry feeling, and with his sensory processing disorder he just couldn't process that new feeling.  Finally on about day 3 he said, "My tummy hurts.  I think it's because I'm hungry!  I should eat some food to make my tummy feel better!"  Around that time, he also started bringing me food from the cupboards when it was snack time.  Amazing!

One day he asked for a piece of toast, so I toasted some Caleb-safe bread in the oven.  He ate about two thirds of the piece of bread!  He had NEVER eaten so much bread before!  So I rewarded him by bringing him to the store that very afternoon and buying him his very own toaster (since our other one was cross contaminated with wheat).  He asked for a piece of toast for his very next meal and HE ATE THE WHOLE THING!  We also went to Red Robin (the only allergy-friendly sit-down restaurant that we've brought our kids to) and he ate AN ENTIRE HAMBURGER PATTY!  This is seriously big news, people.  He now eats an entire piece of toast for breakfast every single day, because Grandma told him that she eats a piece of toast for breakfast every day.  We slather it with coconut oil and sprinkle on some cinnamon and sugar.  He also eats lunch, dinner, and two snacks.

He consistently lost weight until just this morning.  He weighed in at 30lbs 11oz, which is just 5oz down from where he started, and up 7oz from six days ago!  So he's making progress and it's entirely possible that he'll keep gaining with his oral eating!  

The last time we tried decreasing his tube feedings, he lost some weight then gained really well on his own for about a month before he burned out.  It's really hard work for him to eat that much, so I wouldn't be at all surprised if he needed his tube feedings increased again eventually.  Which is fine.  We're in no rush to get rid of his tube.  But it's really great to see him being excited about eating more!

Also at 4.5, Caleb:
  • Loves playing outside
  • Loves playing with his brother
  • Knows the sounds of all of the letters and is starting to put sounds together.  Soon he'll be sight reading
  • Is a good little singer
  • Is finally able to write his own name and many other letters of the alphabet
  • Is finally starting to draw pictures (mostly of cars)
  • Is super emotional and has emotional breakdowns many times daily, usually over things like, "You can't go play outside until you pick up your toys."  He doesn't understand cause/effect and consequences very well.  I'm beginning to think it may be how his promised learning disability (as a result of his brain bleeds from prematurity) is being manifest.  It's hard to stay patient with him.  We have variations of this conversation every day:
C: Mom, Can I go play outside?
Me: You can play outside after your put your toys away.
C: (starting to freak out) But I want to play outside!!
Me: Then put your toys away.
C: But I don't want to put my toys away, I want to play outside!!! (screaming and crying and freaking out)
Me: You can play outside, you just have to put your toys away first.

And it eventually ends up with him in such a rage that I send him to his room to calm down.

Yesterday I ended up writing it down for him to see his choices on paper, even though he can't read.  He seemed to understand it a little bit better that way (at least he didn't end up in a rage over it).  I think he'll learn, it'll just take a lot of extra time and repetition, and a lot more patience on my part, before he can really understand.  That's how a lot of things have been for him (such as learning morals, and to respect the dog and cat).  Some things seem to come easy for him, like talking and remembering things, but some things are just really, really hard.  

Also, just a little update on his egg trial:  The pathologist said that the biopsies don't indicate a reaction, but after reading through the report myself it definitely qualifies as a reaction.  I think the pathologist just missed the memo on eosinophilic diseases being patchy--you can have a completely clear biopsy in one spot, and move over half an inch and find 100 eosinophils.  So for now we have removed egg from his diet and we'll be asking for a second opinion from his new GI after we move.

And now for a smattering of pictures!

(We took bites to make our popsicles match.)

 (Caleb made this "airplane" out of Lincoln Log stuff.)
(A lunch I made that looks like Perry the Platypus with curly hair.)
 (Caleb performing "surgery" on Russell.)
(Russell performing "surgery" on Caleb.  Everyone survived.)