Wednesday, October 10, 2012

Great Results! And a Funny Story...

Jerry's heart looked great on the MRI.  They were surprised they could get good images at his age but his heart rate stayed nice and slow.  His arteries were not blocked and this is such great news.  He may still run into complications later and still needs to have heart scans regularly.  His pituitary looked normal in the brain scan which is not ALL great news.  If it showed to be a little small it would make sense that he needed growth hormone because enough could not be produced.  Since it is normal we need to go back to that awful growth hormone stim test.  We know he has low IGF-1 which is kind of like the messenger to make the growth hormone do what it is supposed to do.  But it could still be low hormone that is the more exact cause.  Both things need different medications and the only way to know which is the stim test that we tried where they could not get the IV in.  We are just on hold now until John's new job insurance kicks in.

Isaac's igf-1 test has not come back yet.  We did this crazy saliva cortisol test where he was supposed to spit in the cup from 11:30pm to midnight but it turns out we got the wrong directions from the dr.  It is a certain vial thing we needed and actually he has a sponge like thing in his mouth for 2 minutes during that half hour and then it goes in the vial and to the lab.  so we have to do that all over.  I think they are testing for some crazy thing called cushings disease because Isaac had significantly slowed linear growth and rapid weight gain.  He does actually have some of the other symptoms so it is kind of scary but I am SURE it is not that.

So here is a funny story from a month or so ago.  Jerry and Isaac were tucked into bed and I could hear them talking on the monitor.  There have been many funny conversations.  This one tops them all.
J--Isaac, I am not sure who is going to be older first, me or you.  Who is going to be a grown up?

I--Jerry!!  I AM OLDER!  YOU WILL NOT be 18 and I will.  I will move out on my own and leave the house.  I can get a job.  YOU CAN NOT!  You will not be as old as me.  After a lot more birthdays after I turn 18 then maybe you will be doing it.

J--But I don't know who is going to die first

At this point my heart starts aching and I want to go in but I listen...

I--Jerry, nobody knows that

J--I can't wait to go to heaven!!

I--Jerry, you don't want to do that, bad stuff happens on the way to heaven.  You get run over by a truck, you maybe get shot or fall off a mountain, or have a heart attack.

YES, Now I rush in.  " one is going to die, no one is going to get shot or hit by a car..."

Crazy!  Jerry is always talking about heaven and about his Papa and his Nonno.  He said a few days ago that Papa is learning all of his music with him from his music player and the music he learns at school.  He talks about all the colors of heaven and how beautiful it is.  I wish he didn't have to even know of death but at least he somehow is so much more convinced of the amazing after life than most!

I also did try to tell them how God makes everything okay when we are going to be with him and how it is just hard for people that miss his new angels.  Such a tough thing to explain...

Tuesday, October 2, 2012

All Done and Done Well!

Jerry did an amazing job today!  He was so cooperative and pleasant and did everything they needed him to do.  Since he showed no real anxiety or resistance they did not even give him the liquid medicine to calm down.  He just made his gas mask smell good with smelly chapstick and breathed in when it was time.  He had a rough time waking up but did fine coming off of the ventilator and we were able to leave pretty soon after he was awake.  I am so glad it is over and thank God that Jerry did so well and there were no complications.  I will hopefully talk to the doctors tomorrow about the results of both his heart and brain MRIs.  My poor little guy.  I really hope we can be done with this stuff soon.  A year with out some kind of a test would be so nice for him. to bed.