Saturday, September 15, 2012

Jed's Cardio Appt.

We had Jed's cardiologist appointment on Friday.  I would have written about it that evening...if our day wasn't a disaster.  Actually, it wasn't a total disaster.  The most important part was perfect!  There is NOTHING wrong with Jed's heart.  Phew!! Big sigh of relief.  This means the ball gets bounced back to endo.  Jed has an appointment with pulmonary this coming week.  I am not expecting much out of this.  Though I am trying to, expect something, that is.  It seems whenever I expect something from an appointment or supplement, or such, nothing comes of it.  Then, when I am totally not expecting anything to come of an appointment or supplement...BAM!  I get hit over the head.  Sooooo, I am trying to at least tell myself to not disregard his coming pulmonary appointment.

The following week is Jed's big endo test.  I am nervous on multiple levels.  Worried on how he will handle the test.  Worried how he will handle the meds they will use to stimulate the pituitary gland.  Worried he won't be able to handle the required fast from food the night before.  And deep down, I'm worried that the test will come back as 'normal'.  At this point I really doubt that is going to happen, BUT the what if's keep coming to my mind.  Don't get me wrong, I really am not looking forward to giving Jed daily injections of a man made product every day for the next 11 to 12 years.  And silly of all sillies?  I'm a wee bit worried that Jed will look like a stranger for a while.  I know that is TOTALLY SILLY.  But just stand in my shoes for a moment.  No matter what Jed looks like he will still *BE* Jed.  But lets be honest, our physical appearances are part and parcel with who we are.  Jed has always been small.  He has always had a large head.  He has always had health issues.  He runs and plays, but definitely not at the same high level as some of his other siblings.  And all of that?  All of that may very well change, and in quick order.

When we had our follow up appointment with our family doctor he made mention that I need to get ready to buy a lot of new clothing for Jed.  He must have said that at least 3 times!  Later that week I read that during the first year on growth hormones that children will grow twice as quickly as those at their same age (not sure if that is time wise, or bone wise).  So if a normal X-aged child will grow 2 inches in a year, the child given the growth hormone will grow 4 inches that same year.  After the first year growth returns to a normal pattern.  Ahhh, so that is why our doctor said what he did.  Seeing as how Jed's normals have been SO low and slow, I'm a wee bit scared to see just how quickly he may start growing!  Ha!  It will be exciting, for sure, but also a little unsettling.  It's taken me a few weeks to get used to Jonah's new slim look.  Again, it's not bad, just different, something to get used to.  I mean Jonah has ALWAYS, from the time he was born, been thick.  Thick all over :-)  ha, ha!  And now he's this, this...slim boy.  So weird.  Jed, Jed has always been skinny, really skinny, pale, short, small everything (just holding his hand in the parking lot today really drove that home, his wrists are SO small)!  Jed has been wearing the same shoes for two years and they still fit!  He wears a size 3T (He is 6 years old).  Most of those 3T's are hand me downs (washed multiple times and shrunk).  On top of that they are being worn by Jed and Jonah, since Jonah is/was the same size.  Jonah is now outgrowing some of them, and in no way will he be able to fit them for next year.  At Jed's current growth rate, he will still be wearing size 3T, at least summer clothing! 

Ok, I am rambling.  I just can't process this next possible phase in our lives with Jed.  And at the same time, I'm afraid we will come up empty handed, staring down another blank road, with no signs, no arrows, no stop signs, or help desks, get the idea.  That is a scary place to be.  We've been there many times, and I don't relish standing there again.

Off to bed now.  I've had a bit of a cold the past couple of days.  Thankfully it hasn't gotten out of control (most of my colds in the last few years turn quickly into full blown sinus infections).  So some good sleep is in order :-)

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