Saturday, November 19, 2011

GI Update: The Good, The Bad, and The Mommy

We left Dr. Liacouras several weeks ago with a mandate to stop feeding our son.  This is, at the same time, easier and more difficult than you might imagine.

Easier, because he's little.  He can't really sneak food, he can't beg us to let him have food, he gets what he's given.  End of story.  Except that it isn't.  He's not under my watchful eye all day.  We now have to worry about him being "accidentally fed" at school.  Don't laugh, I'm not joking.  I wish I were...  Aidan is prone to quietly scooting around on the floor, hoovering up other kids' leftovers.  And if we think it's hard now, it's only going to get worse when he transitions up to the next classroom.  Kids sit places and eat things at specified times.  Kids that aren't my kid.  My kid will sit - I don't know - in the corner by himself?  Licking walls?  Can't worry about that now. 

The good:
- Tom's insurance came through with 43 cans of Neocate.  (Because life is lifey, Aidan prefers Elecare.  Tough crackers, kid.  Tough foodless crackers.).  It only took two weeks of worrying and wondering where his next bottle would come from, but we won't have that particular worry for a couple of months.  This is especially amazing since most insurances won't cover any formula at all, even when there's a serious medical need.  UHC apparently recognizes the seriousness of the FTT diagnosis, and we now have formula galore.  For now.
- Aidan has stopped fighting his prilosec.  It may taste nasty (anything compounded with sodium bicarb would be pretty foul) but he's really lowered his standards and now he (usually) takes it like a man.  I'm pretty sure his taste buds have died.  During yesterday's barium swallow, he was given a 2oz bottle of barium and we were told he needed to ingest about half an ounce.  He gulped down all 2oz and cried when there wasn't more.

The bad:
- Our boy won't drink.  His MO is to wait until he's STARVING, and then drink just enough not to be starving anymore.  He needs 900-1100 calories every day.  We are fighting just to get 500 into him.  And our bar (and expectations) has fallen so low that if we do get 500 calories in, we consider it an enormous win.  It's usually closer to 400.  How will he ever grow?

The ugly:
- Mommy.  I'm the ugly.  I'm worried about him and angry about everything and mean to everyone.  Everyone's helpful suggestions infuriate me (No, I can't forcefeed him every meal via medicine dropper.  No, I can't flavor it with all of the food he's not allowed to consume.)

Everything everyone says makes me angrier.  "My son was always small, and now he's 6' tall."  Oh, okay.  I'm sure this is fine then.  I mean, as long as it worked out for you.  "My daughter's a picky eater too.  I understand."  No, sorry, you don't.  He's not a picky eater.  He's prohibited from eating.  This isn't the same thing.  Not even close.

I am part of a group of 250+ moms of children exactly Aidan's age.  I find myself drifting further and further away because I have less in common with them with each passing day. 
  • A handful of them are pregnant again, already.  Many of them are actively trying to conceive.  The thought of having another baby who could have the same (or worse!) problems fills me with dread.  I love my son dearly, but I am 100% certain that I do not want to do this again.
  • Normal daily discussion often centers around food.  Not only do I have nothing to add to this conversation, but I'm also angry and jealous about everything they say.  There are lots of "I have a picky eater" complaints.  I want to physically shake some understanding in to those mothers.  I would give anything for a picky eater.  Because a picky eater is still an eater.  I know this will come in time, but the "right now" is so hard.
  • When "what's for lunch?" isn't on the menu, there's a lot of conversation about developmental milestones.  Of course there is, 250 parent of kids born within weeks of one another are absolutely biologically required to compare notes.  But again, I have nothing to add.  Because of the months of time Aidan spent in food/reflux-induced pain, his development really slowed down between 6 and 10 months.  Aidan is gross motor delayed and speech delayed.  Not a ton, but enough.  His peers at daycare are passing him by, and it's so, so hard to watch.  It's even harder to read "my baby doesn't do enough tricks!" threads.  No, he doesn't clap.  He won't wave.  He won't give you a high five, blow you kisses, or tell you he's soooo big.  But boy can he contort his body to avoid the pain of acid reflux.

So if you haven't guessed, the hardest part is definitely staying positive.  Recognizing what he's great at, where the good news lies, and how to celebrate all of the amazing things about him.  I need to do more of this, I know.


  1. I am so sorry you are going through this. And as one of the other Jan mommies, I completely understand why the forum is not always helpful when you are dealing with so many more significant issues. My baby is relatively easy, and I am so overwhelmed that I cannot imagine trying to have another one right now. I would guess a lot of people feel that way, but don't post it since it makes you not look like the best mommy.

    I do know that you are a wonderful mother, because you are working so hard to try to get early intervention to help find the causes of Aidan's difficulties, and to come up with a plan that will help him thrive.

  2. I had no idea you were going through so much with your sweet little man. I'm so sorry life is so tough. I have not dealt with the same issues, but I do know what it's like to have a kid in and out of the hospital, and dealing with doctors good and bad. If you ever need to talk, let me know.