the wall

It was bound to happen sooner or later. 

Zachary hit the wall this morning.  Not the one Pink Floyd sang about or the one I hit at mile 22 of the marathon I ran many years ago, but the one where he became so hungry he simply was unable to deal with his emotions.  And it wasn't pretty.  It ended up being about a half hour of uncontrollable crying followed by 15 minutes of laying flat on his back staring into space.  Could have been worse but it was tough seeing him so upset and signing for his bottle and not understanding why we weren't giving it to him. 

We're now on day 5 of the tube wean and it is clear that it is about to get ugly.  Real ugly.  We kinda expected it.  The therapist overseeing the wean called from Germany yesterday to warn us that, based on her experience and the progress we've made so far, she thought a big meltdown was coming in the next day or two.  And it will coincide with a further reduction in the number of calories and amount of fluid he'll be getting.  The last couple days he's only received about a quarter the usual calories he had been getting before we started this torture known as feeding therapy.

Right now we're forgoing his first two bottles and offering his purees and solids instead.  If he doesn't eat anything, he gets nothing until his 1:30 p.m. bottle.  That bottle may be on its way out too this weekend, along with the Pediasure (the high calorie, sugary, artificial junk he drinks) in favor of whole milk.  The therapists have explained that there's a connection between thirst and hunger and the willingness to try purees and solids.  We basically need to get him good and hungry before he'll be open to transitioning from simply licking foods to actually biting, chewing, and swallowing them. 

We feel like terrible parents to be denying him such a basic necessity of life, but it's for his own good.  And we are doing it under the supervision of his pediatrician, an occupational therapist, a speech therapist, and a physical therapist, so he's being well monitored for any signs of distress that would halt the wean.  It's still tough though, perhaps the most difficult thing we've seen so far in his short life, maybe even more so than the surgeries and blood transfusions, and tubes and wires that were commonplace his first eight months.  I guess it's because he's self aware now compared to then.

I just wish he understood short-term pain for long-term gain.