He is able to do more than we can ask or imagine...

Feeling a huge sense of relief as I type this post.  Also feeling like we are on a long airplane ride to nowhere, sitting in chairs endlessly and just waiting...

Tom and I didn't sleep well last night, anticipating an early start to a big day today.  Lilly, oblivious to the magnitude of what this day meant, thankfully slept very soundly all night.  We had her into the car in time for a 6:30am show time at Surgery, with no food or fluids after midnight (in her case, after about 8pm).  After several hours of waiting, prescreenings, more waiting, discussions with anesthesiology, more waiting, meeting the Chinese-speaking neurosurgery fellow that would be assisting Dr. Oakes today, and attempting to distract an increasingly agitated and anxious Lilly, it was time for her to go to the OR.  Seeing her anxiety each time anyone in scrubs or a lab coat would appear in our room, the anesthesia nurse wisely decided that a little dose of versed (some call it "happy juice") would be a good idea, as we would not be able to accompany her back to the OR where they would administer the anesthesia.  I hated the thought of her being scared and without one of us by her side.  So I was thrilled when they suggested the versed.

Lilly, however, was not at all keen on the taste of the versed, spitting much of it back out (narrowly missing my clothes) and fighting against drinking what was left of it.  We got a little bit of it into her, and it was enough to take the edge off of her anxiety and relax a little.  She was still not happy when it was time for them to wheel her away from us (we could go as far as the double doors into the OR), but she was subdued enough to not try to climb off the gurney.  One of the hardest things I've ever had to do was stand there and watch them wheel her away.  Not sure if Lilly or I shed more tears.  So thankful Tom was by my side.

Every hour or so, they would call us from the OR to give us updates.  We had the unexpected blessing of spending some time talking and praying with a couple from our church--Bill and Becky Moulden--who were on their way from FL to a family reunion in Indiana.  They decided to stop and try to find us--so sweet, and a great distraction for both Tom and me from the business of waiting. 

  After a little over 2 hours in surgery, Lilly's doctor appeared to let us know things had gone fabulously.  He even said with a smile,"I don't mean to sound smug, but we are quite proud of ourselves!" as he described what they were able to do.  Here, in my layman's version of the procedure, is how it went:

• they inserted a small scope into her spinal column at L4 (the 4th lumbar (lower back) vertebrae) to look for the filum and any meningocele manque (false nerves that might attach the cord to the spinal column). 
• They found and cut the fatty filum to prevent it from attaching at any point in her spinal column as her spine gets straightened.
• They looked from L4 up to L1 for any attachments, and found none.  Great news.  But Dr. Oakes, having expected to find some issues and being suspicious of what he was not seeing, decided to look up higher.
• They made another cut higher up at L1 and re-inserted the scope to attempt look up higher into her spinal column.  Despite his doubts yesterday that they would be able to scope the full length of her spinal column because of limited scope length and maneuverabiliy around her spinal curve, he was excited to tell us that they were able to scope up a good portion of her spine, to the biggest bend in her curve, at T4, which is the 4th vertebral body from the top in the thoracic region of the back.  This location is just above the point at which her spinal cord begins to split, past the area of concern.  
• So, only two small incisions, about four inches apart, on her back.  No blood transfusions.
• The best news to our ears: he was thrilled to report that he saw NO issues or concerns whatsoever in her cord.  This means she is now cleared from a neurosurgical standpoint for the orthopedic issues to be addressed by Dr. Campbell at CHOP.

We are now in the recovery room.  Dr. Oakes has ordered her to stay in the PICU for tonight, but is optimistic that tomorrow we can move her to our hotel, where keeping her happy and entertained on her back might be a bit easier (hmmm...need to go get some pull ups since going potty is not easily done flat on the back). 

For now, it is just so good to sit by her, see her alert (well, in and out for now), and see her wiggle her toes.  She really wants to "get up," and "go home," both of which will have to wait for now.  I know as the morphine wears off and her pain is managed purely by analgesics, and as she begins to feel better altogether, it is not going to be an easy job for the next few days. 

We are so appreciative of the prayers on our behalf, of the e-mails and text messages and blog comments and facebook comments to encourage us.  We are also appreciative of Lilly's Sunday School class who showered her with little toys, books, and a card signed by all her friends.  So sweet.  She is a little bewildered by the outpouring of gifts and love, but it has been fun to watch the delight on her face. 

All for now, I have important work to do...  More to come.  Thanks for reading!