A Few Little Hiccups

We headed back to the endocrinologist at Vanderbilt for Jonah's regular check-up last month.  We have gone every four months for the past 21 months or so.  It's hard to believe that it has been almost two years already!  Only, what?  Ten more years.  Man.  We have hit a few bumps in the road the past few months with his treatment and results.  First, Jonah has randomly re-scared himself (re-scared? re-frightened? re-freaked?) of the injection.  A few months ago I was able to give him his shot while he happily played Angry Birds or read a book.  The Thanksgiving before last, he called the entire extended family in to the living room  to watch him get a shot in his butt to show off how brave he was.  It was a weird moment, and he was super proud.  Sometime during this spring, he started trying to wiggle away again.  He would cry and struggle to stay still and tell us that it was going to hurt.  He wasn't comforted when it was over and hadn't been painful. He was really stressing himself out, and it was so confusing.  For a few days, we were back to having to hold him down like we did in the very beginning.  The endocrinologist is stumped.

I should add that, while the shots are usually painless (I tried one on myself before we began treating him), there have been some instances over the past 21 months when something unusual has caused them to sting.  For example, if he gets nervous and tightens the muscles in his butt cheeks, it will hurt a little.  Once, he moved just as I hit the button and the fluid gathered into a little painful lump just under the skin.  There was also the night that the hair-thin needle mysteriously bent and I didn't notice before giving him the injection.  That was a rough one.  These problems are EXTREMELY rare, but still suck.  We went back to deep breaths and ice packs, and they helped a little bit.  Jonah refuses to try getting the shots in a different location, so we just alternate between butt cheeks.

I have no idea why, but one night I taught him the "bum bum buuuuuuuummmm" part to Neil Diamond's Sweet Caroline.  They should teach Neil Diamond lyrics in Medical School.  Seriously.  Who doesn't feel better after a few choruses of Sweet Caroline?! It's a scientifically proven fact that Neil Diamond makes everything better.  It's enough to Crackle your Rosie.

So now, Jonah lays down across my lap and it goes like this:

Me: Sweet Caroliiiiiine,
Jonah: Bum Bum Buuuuuum!!!
Me: Good times never seemed so gooooood
Jonah: So Good! So Good! (Deep Breath)
Me: I've been inclined
Jonah: Bum bum buuuum!! <--- inject during bum's and hold.
Me: To believe they never would.
Remove Needle
Again, I have no idea, but this is bizarrely comforting and Jonah requests to do it on nights I try to just count to three.  Thank YOU, Mr. Neil Diamond.  To show my gratitude, I promise not to tell anybody that your real middle name is "Leslie."

The other little hitch is that Jonah's rate of growth has slowed way down.  He was growing at a rate of 12 centimeters per year, and now he's down to about 6.  It's still much better than the less than two he was doing before treatment began, but it was kind of a bummer to see.  He has dropped down from the 12th to the 11th percentile.  He also weighs a pound less than he did last year at this time.  The doctor suspects that his other medication is killing his appetite, and his lack of weight gain is slowing his growth.

After an exam and some blood work, it was determined that Jonah is receiving a high dose of synthetic growth hormone for his weight but it is not producing the results "they" expected.  The doctor assures us that we still have TONS of time, and that if this trend continues we can increase his dose.  Right now, we're just trying to get him to eat a little more and celebrating the continued progress.

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