The Waiting Begins

Wow, you guys are awesome!  Thank you for the comments and support.  As if to over-emphasize the point that you are there and can comment there was some glitch on the email receive side of things and every comment you all made was emailed TWICE to us today.  Ok ok, we get it  (  Janice, no apologies necessary, this blog is about what true feelings are.

Rebekah, Sarah and mommy took off about 8am this morning for the hospital and returned about 1pm or so.  Rebekah’s counts were doing okay but we don’t know for sure whether they are still going down or coming back up.  Therefore the girls are going back to the hospital tomorrow for an unscheduled visit to check counts again and compare them to today.

What mommy did learn about, however, is next week’s scans.  Here comes the waiting and the unknown.  Right now we are scheduled for A LOT of tests.  Bone Scan, CT Scan, Audiology Check, Chest X-Ray and Panorex are ALL scheduled for Monday.  Thursday is MRI, ECHO and EKG.  Friday is a PET scan at a different hospital.  All of these require a full anesthetic and are a bit tough on Rebekah.  Mommy and daddy also have it tough in the waiting.  This is where we find out if the last nine months have made any improvement.  No matter what happens we know that the last nine months have bought us nine months.

I, daddy, am confident in the results that will come back but at the same time am afraid of being too confident.  I am reminded that many of the other children have been acting and seeming their best right up to their final moments.  It is difficult because no matter what we feel, we truly don’t know where things are going.  But that said, PLEASE understand that there is not a single parent out there that really knows for sure what tomorrow will bring for you and your child.  For us the odds are against long term survival and that makes a huge difference in how much we appreciate every waking moment right now.  For most of you the odds are in favor of “long term survival” but that should not change how you view every moment with your kids.  Please love them today like there is no tomorrow – and then do it again tomorrow and the next day.

And if that were not enough, tonight is ER.  It is a show we have come to enjoy but I am not sure we even want to watch it tonight as it is about ALS (Lou Gehrig’s Disease) and is said to be very depressing.   Rebekah’s Grandfather and many of her maternal relatives died of ALS – and her aunt is dying of it right now.  This is difficult on mommy especially.  Rather than re-hash a post from last year I will point you to Tammy (a new blogging friend who also happens to be fighting ALS)’s blog as she put up a post today that included something mommy wrote last summer.  

Please pray for scan results, patience and the ability to make it emotionally through the next couple of weeks.