Friday, June 18, 2010

no more spinal taps!

Isaiah did great, as usual, at his appointment yesterday.  He fasted all day and was the last to go in for his spinal.  (They call patients beginning with the youngest, ending with the oldest.  When we started this journey, he was always close to the youngest.  Yesterday, at nearly 8, he was the oldest.  So sad to see so many young kids in the hospital.)

He and I established a pattern with the first few spinal taps: I'd carry him in (rather than using a wheel chair), they'd administer the anesthetic while he was in my arms, and I'd lay him down when he conked-out.  Since the beginning, as soon as he'd start to feel the drugs, he'd start yelling "I'm getting sleepy!  I'm getting sleepy!" as loud as he could.  He likes to try to fight the medicine.  It's kind of become his trademark.  After the first few times the doctors and nurses became accustomed to this and we all kind of laughed about it.  I've never coached him to say this, and he doesn't ever remember saying it.  But he always says/shouts it.

Yesterday was different.  

As the Propofal began to take hold, he just started to scream.  Not a fearful scream; more like a battle cry.  Like he was charging into a fight.  Think Braveheart.  It was kind of disturbing.  The doctor looked startled and asked, "What was that?"

As I walked out of the room, I thought, "That's a very strong kid, nearing the end of a very long journey... and he's still fighting."

Wednesday, June 16, 2010

last spinal tomorrow!

Tomorrow is our LAST scheduled fast and our LAST scheduled spinal tap!  Isaiah is so excited.  He's feeling such a sense of accomplishment (and, probably, relief).  Every 12 weeks for the last 3 years he's gone through this fasting, waiting, spinal tap, feeling dizzy all day routine.  This will be so good to have behind us.   

We'll be fasting with joy and thanksgiving tomorrow.  

Friday, June 4, 2010



drop by any time between 5:30 - 8:30

To celebrate life and the end of this 38-month journey, and to express our gratitude to all of you who have prayed, supported, and cheered us on, we're throwing a really big party!

Dinner will be served!  

Please RSVP by August 1st to and we'll send you more information including the location!

Celebration is the way in which faith in the God of life is lived out, through both laughter and tears." - Henri Nouwen