Wednesday, December 31, 2014

Settling in

I finally approached the Dyskeratosis Congenita support group late last night. I've been living in denial since May.

 I inquired about heart defects in DC.  I had some wonderful moms private message me that in fact, their sons heart look just like my son's.  Not only that, the pulmonary AVM is also something common.  One mom said, that that issue is going to be the thorn in our side.  It can not be fixed.

This is what the further testing will be looking at, to see if Sam has a pulmonary lesion or AVM.

Things just started feeling really complicated and overwhelming.

I didn't sleep at all last night.  I went to bed at 2am and at 3:15, I was awakened by Sam who was feeling pretty sick.  I drugged him up because there is nothing worse than vomiting!  Thank goodness we had some Zofran around.  At 4 am, he admitted to eating an obscene amount of Fiery Hot Cheetoes at the little party he hosted at our house last night.

Well...that'll do it when you have a pancreas that isn't really loving life on most days!  He finally fell asleep a little after 4.  I laid there exhausted and fell asleep for an hour or two but that was the extent of my sleep.

Being alone and awake at an ungodly hour is both peaceful and lonely.

Today is New Year's Eve.  I am trying to figure out how to bring in the new year with a positive note, figuratively speaking of course.  I will be alone and I have mixed feelings about that but such is life.  I don't want 2015 to start with a bad mojo in the air.


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