Luke Update 9.1.11

Sweet boy Luke had his follow-up with his gastroenterologist, Dr. Berhane, this week.  I was actually quite thankful to see her.  On Tuesday's post I told you about the awesome couple overnight date night.  What I left out was the ick that happened right after dinner.  Luke had too much in his mouth, I swept some food out, gave him some Boost (his supplement) to drink and then he promptly threw up ALL OVER the highchair.  While Scott bathed him and mom and dad cleaned up the floor, I took the highchair outside and hosed it down.

Not the best way to leave.

But, I put him to bed after all the crazy and prayed for the best.  Just as we walked in the door from our date the next morning, Luke threw up ALL OVER the entryway.  As my mom said, "Well, at least it was on the tile."  So, really, since Saturday he's been a little urpy, a little less active and less interested in eating.  Big sigh here.

I did send a text to his OT and she was wonderful enough to call me back.  We chatted for a bit and her reassurance and advice really helped improve the situation.  If not for her and Scott, I just might've checked myself into Shoal Creek.

Ok, back to the doctor visit.  Luke's weight was significantly lower, he went from 20 lbs. 14 oz. in mid-July to 19 lbs. 3 oz. this week.

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We talked, and talked, and talked about our options.  I think there's a part of Dr. B that wishes we would've just put the g-tube in last November.  There are days I'm not sure, but mostly I stick to my guns.  I think we're doing the right thing.  Our immediate goal is to get Luke back to baseline, back to 21 pounds.  We return in 6 weeks to check his progress.  The next goal is to get him eating, like really eating.  We have a speech therapy evaluation coming up soon and hopefully that therapy, combined with occupational therapy will help us jump a big hurdle.

This is a marathon, Dr. B, reminded me.  Doesn't she know I'm more of an organized sprinter?

It's possible that g-tube surgery could still be in Luke's future, but my heart is telling me to stay the course.  To keep going to therapy, to keep offering food and to keep working on his sensory challenges.  It may be a year, or much longer, before Luke eats like other kids.  I have confidence we'll get there, though.  It's just hard to hear other parents talk about how great their kid eats or how chubby they are.  Then I remember how I've been that mom four times over.  The perspective can be a ... well, you know.

This week's visit was yet another reminder of how Luke's specialists pretty much live in a state of awesomeness.  What a gift that we have Dr. B as his gastro.  She is so patient, so kind, so understanding, so honest.  And, she even managed to get Luke on her lap for a photo!

Next week we have three biggies:  cardiology (the vote will be in on surgery - eeek), developmental pediatrician and geneticist (all the results come back from the testing).  Big, big week.  Pray for us.  Mostly just pray that I don't completely wig out with all that information, that I don't forget to take my camera and that we might be able to fire one of them :)  I'm itching to ditch a specialist, aren't you?