Friends, next steps and random thoughts

All day today, I just haven't been able to write the blog with the info the Neurologist gave me this morning.  I will.  I promise.  But I need to tell Dan first ... and he's on his way to the hospital soon.  Once we talk, I can then tell everyone else. 

So in the meantime ... thanks for all the friends who have written personally (goredan@hotmail.com) or left messages on the blog or on facebook.  I'm not able to comment to all of them but each one is reaching and healing parts of my heart.  I appreciate all the support and comfort.  I don't feel so isolated in this tiny room. I am truly thanking God for my friends!

Enjoy some pics of Manny with his "friends" interspersed in this message.   

I CAN tell you the new things that are going on around here.  They have ordered a sleep study .. I think for tonight.  An EEG (to see seizure activity).  A urinalysis.  And a couple of genetic blood tests.  (Not looking forward to the IV stick to get that!)  But this is all an attempt to help determine the EXACT subdiagnosis under the main diagnosis.  It's also to determine how far the disease has spread and it will help pinpoint treatment possibilities. 

I sit here in disbelief.  One part of me just wants to S C R E A M and run and yell.  Another part wants to completely shut down.  There's a part of me who wants to fight it too.  I know the only ONLY hope of surviving this is a major miracle.  A MAJOR miracle ... and fast!  I know God is completely capable.  And I also know that God sometimes says, "No".  So I tell Him my request.  I beg Him to heal this precious baby.  I PLEAD with Him to take this all away. 

And yet I sit in the possibility that He will decide to take Manny anyway.  And I can't handle that thought right now.  It makes my brain bypass.  It won't compute.  So my brain goes to these completely strange little things.  Like the photo ... I want a great family photo.  (And I have friends who are working on that for me!)

I'm actually quite amazed at how my brain is coping with this by focusing on these tiny, meaningless things.  I'm very thankful for internet, email.  I'm appreciating all the comments and support.  Keep them coming.  And keep spreading word about one of God's precious children in great need.  I know He loves Manny more than I do.  Let's let God know how much we all love him too!