Tuesday, July 16, 2013

I'm Feeling Bloggy

I've been struggling with something lately.  And it is a familiar struggle and I keep wondering where that outlet is...and I think it is this blog.  I have processed through a lot of things on this blog.  And if you've been following along (or not), you know that my son has had his share of medical issues and lots of therapies and OT and...  With all of those journey's I was blogging through them.  Somehow it makes it easier to type something out to a bunch of people (or no one at all) who don't know you.  People who won't somehow judge the decisions you make.  Who can hear (or read) what you are really feeling.  That trudging through some of these decisions is just fucking hard.  And that trying to do right by your kid is a full time job.

And with a new situation that has NO easy answer at all.  I am feeling like I need the outlet.  So onward I go.

Here's what's going on.  The Boy is a little dude.  Always has been.  And because of his struggle to gain and maintain weight he has been followed by a pediatric gastroenterologist for almost his entire life.  She's the same lady...we see her every 3 or 6 months for a weight check.  She puts him on, and then off, a medication to stimulate his appetite.  He has been tracked forever.  He has had all the blood work, and all the tests.  He is just little, and probably always will be.  I am only 5'3" and his donor Dad is around 5'6" or maybe 5'7" at best.  So we aren't expecting him to shoot up to 6 feet.

In my mind I always assumed he would be 5'6" or 5'7" like his biological Dad.  That's still on the "littler" side but totally respectable.  So I have been functioning with this belief for literally his entire life.  On Friday of last week we were back for our follow up.  The previous visit she had done and entire panel of tests, and also sent him to a cardiologist to make sure he didn't have a hole in his heart (He doesn't.  But man; that was super fun).  So we were getting all the results.  Everything normal...not allergic to anything, doesn't have Celiac disease, growth hormones are normal, can tell he's taking a vitamin because his iron is fine...blah blah blah...it's all fine.  He's perfectly healthy.  He's just little.

So she shuts her folder and looks at us (me and my mom) and goes, "I think this is just our boy.  We have followed him forever and he just seems to continue along this same path.  I think put him on a regiment of medicine every other month, and I'll see you back here in six months."

As we started to pack up I asked..."Just wondering, if he does just continue along this path...and keep doing what he's doing...how tall can we expect him to be as an adult?"

She flips open her folder and looks down at it and casually says, "Oh...about 5'4" or 5'4 1/2"..."  (GULP!)

I was a little disturbed by this and I asked if that was it.  She said the only other option to look into is Growth Hormones.  And that...is why I turn to this blog.  This is a totally controversial subject and I honestly just need a place to type out my feelings.  To navigate my way through what to do next and how to best take care of my boy.

I will tell you this.  Going into this meeting on Friday I would have never considered Growth Hormones.  If he was going to be 5'6" or 5'7" then there would never be a need.  So I never even considered it.  All of a sudden I wanted more information.  How many inches could that potentially buy?  (3 to 4).  Do you really have to give them a shot every day for several years? (yes).  What are the side effects? (talk to the endo).  Does insurance cover it?  (sometimes yes, sometimes no.  It's (OF COURSE) a much more complicated answer than that).  What ages are you supposed to do it?  (starts as young as 5 or 6 and goes until right before puberty usually).

And then I came home and looked at my sweet little boy's face and I almost died.  I cried and I cried.  And I know it could be much worse, and I know how lucky I am to have him totally healthy...  But still.  My boy as a grown man would only be 5'4".  Will he ever go to prom?  Will kids tease him about it his whole life?  A short guy that also has bright red hair?  Seriously?  And then I pick my shit up and I realize that I happen to be lucky enough to be raising one of the most amazing kids on the planet.  And that even if he happens to be the shortest kid at his summer camp, every single day a gaggle of kids come and gather around him when we arrive in the morning.  Girls and boys.  All the ages.  He knows them all.  And he hangs with them all.  Everyone who meets that kid sees the sunshine in his heart...  I hope it always stays that way.

So here is where we stand as of today.  I called to make an appointment at the endocrinologist and since he hasn't been seen there as a patient since 2008, he is considered a new patient.  So I have to call his gastro doctor and have her call in a referral.  Oh, and by the way, there is about a 4 to 6 month wait for the next open appointment.  Fantastic.  So I call the gastro and ask them to take care of it and ask if she will sweet talk them into getting me in sooner.  She is a fantastic advocate.  Woman knows how to get things done!  So now we wait.  And I google things obsessively and change my mind on an hourly basis.  And I go through my life looking at every single man I see and analyzing his height, and if he seems at all on the short size, I am immediately looking for clues as to whether he is living a happy and fulfilling life.  It's ridiculous.  My brain is spinning.

Disclaimer:  I literally just viewed my own blog for the first time in a really long time.  Several updates need to be made; clearly.  No clue how to do that.  :)  Also if you happen to know me in real life, or on Facebook, please do not link me personally to this blog.  I like to keep this as private as possible.  Thanks.