Tuesday, January 12, 2016

Pants and Shoes

You know that scene in the movie Titanic where Leo is teaching Kate to hack up phlegm? You know..."spit like a man!" Well in our family of mostly men, and my not-always-genteel self, we all know how to "spit like a man," except for poor baby Levi. I had this "motherly instinct" (if you can call it that) when Levi was in the hospital, that told me he just needs to become Kate Winslet, and I need to become Leonardo DiCaprio and remake that scene. The poor boy seems to cough and cough trying to and clear some thick mucus from his throat until he spits up his meal. (He also seems to throw up whenever he's done eating because he feels so full that he's nauseous, but I'm not sure what movie has that scene for reenactment purposes.) Well, my instincts were confirmed after our past couple of doctors appointments.

The GI scan was both good and bad. It was good because apparently everything gastro-related looks normal. His fundoplication is still in tact (so he just really likes to throw up even after with that surgery, which apparently is possible after all), and his G-button looked fine. He was able to digest the dye that was sent through this g-tube (with just a little reflux) and take another picture ten minutes after to see that it traveled down the correct way. The bad news is that it didn't really answer questions as to why he isn't gaining weight as much and spitting so frequently. Later, they noticed some upper respiratory gunk... yep... a bunch of mucus in the x-ray. Since his pulmonologist said his lungs are clear, they don't want to do another chest x-ray, so now we'll have to get back with GI to see next steps.

Even though I was hoping for some concrete answers, I am getting a little bit used to the big fat question marks that document our lives. It makes the future outcome less about my abilities, and much more miraculous.
We did receive two wonderful nuggets of news this week. First, Levi hit sixteen pounds! He may be a skinny tortoise, but I know he can win this race... slow and steady baby boy, slow and steady. Second, Levi only has to wear his leg braces when he sleeps! He went from 23 hours a day to two-three hours a day. It's absolutely incredible! It feels life changing! Not only did my sweet baby put on his first pair of pants and shoes yesterday, but I can wear him around and hold him like the precious baby he's always been! It makes me imagine the celebration we will have the day he gets that g-tube out. It may be years away, but it will be a celebration we'll never forget, nor forget to appreciate!

A little feeding therapy or "tasting" as we affectionately call it.

A little shaving cream, or mess if you want to call it.

Our celebration over pants and shoes!

I don't think anyone has ever been more excited about pants and shoes as we were!

I almost did back flips.

How much I thank God for these moments.


~PS Buster

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