Getting Geared Up

We are getting ready for a big week next week.

Lilly is scheduled for a CT with general anaesthesia on Tuesday the 21st, and her first surgery is scheduled for Wednesday the 22nd, at Children's Hospital of Alabama, in Birmingham.  We are so thankful that things are falling into place to have her spinal cord issues addressed in preparation for her VEPTR surgery to follow at CHOP.  We are thankful for the expertise of pediatric neurosurgeon Dr. Oakes, and the friendliness and professionalism of his staff.  We are hopeful that we will be able to stay at the Birmingham Ronald McDonald House--though one of us can stay with Lilly at all times in her hospital room.

We are thankful that Tom's dad will be flying in from New Jersey to stay with Jared and Anna so they can stay in their own home and not miss any school while we're away.  He knows how to cook pasta, so they will be happy!  We have wonderful friends and neighbors who are ready and poised to jump in and help, carpool moms lined up, etc. 

Lilly is anxious.  In addition to dealing with some transitions to a longer school day and a 3-day/week program with some changes in the children and teachers, she is clearly growing more anxious as we get ready for next week.  We have talked to her in basic terms about the surgery ("Dr. Oakes will be helping to get your back ready for Dr. Campbell to make your back turn from as "S" into an "I") but try not to dwell on it and I am trying hard to keep life as normal as possible this week.  But she hears us talking to others (when we think she's not listening) and she knows it's coming.  She is becoming clingy and insecure, and is demanding my presence more and more frequently at bedtime and through the night, something she really hasn't needed for months.  I don't like feeling like we are backsliding, but am trying to be sympathetic to her insecurities and balance her need for my presence with her need to understand that we will ALWAYS be here and will NEVER leave her, even if we are not in the very same room at every moment.  As much as I would frequently second-guess my mothering when Jared and Anna were this age, SO much more do I find myself questioning what is best for Lilly.  Praying on a daily, moment-by-moment basis for wisdom because I have desperate need for it.

What to expect next week:

• Monday afternoon, 20 September: Tom's dad (Pop Pop) arrives!  Yay!
• Late Monday night or very early Tuesday: Drive to  Birmingham
• Tuesday, 21 September: 9am appointment with Dr. Oakes.  Noon CT scan with general anaesthesia.
• Wednesday, 22 September: spinal cord surgery to address Lilly's split spinal cord--diastematomyelia--to remove the bony or cartilege septum that separates the two halves, possibly remove fatty filum and un-tether the cord if CT scan indicates it is necessary. 
• Wednesday-Sunday or Monday?: Lilly will recover flat on her back for 3-4 days, greatly restricted in her movement.  I'm told she will not be sedated and will be in a regular room, but we're wondering if it might require ICU for at least the first day or two, with sedation...
• Monday the 27th:  Tentatively scheduled for one-week followup with Dr. Oakes.  Hoping she will be discharged this day so we can head home and be there when Pop Pop needs to fly home.
• Tuesday, 28 September: Pop Pop flies home.

Please stay tuned as I will post updates here as I'm able.  Thanks in advance for your prayers on Lilly's behalf!