Friday Morning Update

Hi there, C here,

"It's 4 AM and All is Well..."

Good morning from CHOP.  It's very early on Friday and all's well in the land of nod.  Ashley's sleeping very soundly after eating and/or slurping her first semi-solid food meal since Monday.  She dined on a bowl of light broth, a couple of frozen popsicles, and a cup of blueberry water ice. She passed on the orange yogurt - don't blame her, I guess...the color was a bit "otherworldly orange"...it tasted fine but I don't think she could get past the color!  Her little tummy filled quickly and she rested for a little while lying in her bed before closing her eyes for the night around 9PM.

She faded off the the sweet sounds of the the Stan Kenton Orchestra: "Portraits on Standards" - thanks for the music, Poppa from Michigan.  We pipe the tunes into the crib through a set of headphones that we hang on the side rail near the head of the bed.  If you set the volume at about 85% it winds up being perfect for her little ears.  Every time we do this, I have clear memories of doing the exact same thing with Kyle right after he joined us in China when he was trying to fall asleep in his hotel cribs in China.  Except that Kyle really seemed to enjoy the Vince Guaraldi Trio and "A Charlie Brown Christmas".  All of the kids also enjoy a collection of Chinese Lullabies by the Beijing Angelic Choir.  It's a wonderful little group of songs that's perfect for falling to sleep to.

It's one day at a time, for right now.  Ashley's test on Thursday (yesterday, I think...) was a positive (meaning "good") result, or so we're told.  It apparently didn't result in any of the doctor's rubbing their chins and saying "Hmmm, I wonder what THAT is?"  or  "Oh my Gosh, what is THAT.  Dr. Welby please come have a look - you've gotta SEE this thing!"  --  None of that.  This effectively allows a few things to be eliminated from the potential list of things it MIGHT be.

The next steps are additional tests that hopefully begin to zero in on what is bothering this beautiful little girl.  She was an absolute trooper for her last test, sharing smiles and giggles with M&D and the nurses on the way down to the testing room and on the way back to the room as well.

The Geges (Ashley's big Brothers) visited her last night here at CHOP.  Grandmom and PopPop drove them down in the early evening.  They had a great visit and picked up Ashley's spirits with a quick trip to the playroom on our floor.  They went home with Mom to sleep in their own room in preparation for their big Halloween Parade today at school - and to give  G'Mom & Pop a break!!!  They really did enjoy their sleepovers and are already wondering when they can do it again!  Thank you very much to Grandmom & Pop for looking after them - and feeding them new things!!  Dylan apparently LOVES fish sticks, Kyle has a fondness for Tilapia, and the they both apparently loved the liverwurst that G'Mom & Pop had as an appetizer the other day!  Who woulda thunk!

It's a little after 4:30 now and I think I'm awake for the day.  The room is dark and fairly quiet, but seems alive with the low, humming, mechanical sounds of IV pumps, the air conditioning, the cooling fan from the little netbook computer I'm using.  The semi-silence is punctuated by the reliable hissing of Ashley's blood pressure cuff as it inflates every 15 minutes to take a reading.  And occasionally, as just happened a moment ago, an alarm may go off on one of the many sensors/monitors tirelessly at work on Ashley and her roomie.  And finally, every now and then, we'll be treated to the light snoring of her bunkmate's dad, who has pulled the sleepover shift for last night.

The room is not so bad for sleeping (the pad on the couch/bed is comfortable but got a little sticky when I turned over in my sleep).  Beats the crap out of the hard windowsill and plastic molded chairs of the Queen Mary Hospital in HK.  There is ample storage space for overnight items, bags, backpacks and coats and a little lighted cubby / workspace for computers & such.

I visited the Family Resource Center yesterday to send a fax to HK and had a great conversation with Crystal who helped me dial out.  (Of course, the fax number they gave me rings endlessly without picking up!!! I'll try to get to the bottom of that next.)  In general, the staff has been exceptional here at CHOP and we feel very fortunate to be here.

So I guess that's it for now...as we continue our quest for answers and normalcy.

We'll keep y'all as updated as we can.

Thanks for following.

C