Our last night (for now)

Hi all .  Pretty nice day after all.  Earlier today I was treated to a FREE MASSAGE!  Gunilla, the Swedish massage therapist, used to be a hospital chaplan.  Since then she’s studied Reiki and really worked her magic on me.  She was wonderful.  She spent a full hour working on me.  I felt much better afterward. 

I did feel bad about letting Cole see how upset I was with NYU (of course he heard me talking to nurses, doctors and techs).  But it’s done and over with now.  I was/am just so mad about what he had to go through this week (his muscles are all tighter due to the szr and inactivity; and he’s behind in school) – and the bigger issue is that we are no further along than we were a week ago.  We come here bc we expect ppl to be on top of their game.  In the end I feel that it happened for a reason.  If we got a good eeg we probably wouldn’t be discussing if we should do a 2 stage surgery now.  The first stage being exploratory: put strips of electrodes directly on his skull, close him up and (get this) wait for a seizure (again).  Second stage is the actual hemispherectomy.  If we do two stages we may be able to save more of the right brain and in doing so save more of the function in his left hand.  Doing this surgery will most likely make Lincoln’s left hand useless.  But I have been assured (because I’ve been grilling every medical professional I meet with) that he may get most of the use back in time with lots of therapy.  I’m really thinking seriously about going back to school for OT.  He will also, most likely, lose most of the peripheral vision in both eyes.  Needless to say, there’s a lot to consider, the eyes and hand just being two of many.

We have our fourth roommate, a little boy named Christopher, very sweet.  Sadly, Naomi and Ruben left today while I was in my massage.  Beautiful ppl.  Reuben has big, beautiful eyes with the longest, black eyelashes that you’ve ever seen.

Saw Mama B and Eva today.  Cookie ate about three pounds of mac and cheese.  Tomorrow they have a surprise for L and me, we can’t wait.

Well it’s our last night and we’re trying to find a creative way to spend it…I’d really like it to involve food.  Lincoln was put back on his anti seizure meds, but we still have one more chance to capture a seizure on eeg.  What do you think the chances are?

We’ll be back here in about three weeks regardless.

Good night everyone.  Thank you so very much for all of your prayers, comments, well wishes.  We really love you all so much!