Back to CHOP

GOod morning!  If you are reading this then you are a true friend.  I haven't written on my blog for MONTHS.  I have missed my therapeutic writing outlet, but life has been too full to make any time for blogging.  I am hoping to start afresh soon...I have many things I've been pondering and much to write about.  Stay tuned for more.  I'm hoping to be writing more and sharing more of my heart in the coming weeks and months.  

But I'm back today simply to give an update and ask for prayer for our family.

As I type, I am sitting in the wee hours of morning darkness of a small room at the PHiladelphia Ronald McDonald House wiht LIlly asleep in the bed we shared last night.  Yes, it's time fo her next surgery.  Today we will do her pre op appointments--a visit with Dr. Campbell in clinic, X-rays, lab work, and a visit to the anesthesia resource center to clear her for anesthesia tomorrow.

Tuesday will be he next expansion surgery.  We'll find out her show time later this afternoon.

We are so thankful to have been able to get a room at the Ronald McDonald House on CHestnut St. this time...we don't often get a room here, so when we do it's extra special.  We were privileged to meet another VEPTR family here last night--a cutie pie little boy named Miles who is 5 years old, who travels to CHOP from Indiana for his surgeries.  It's always a joy to meet other failies who are familiear with the unique and challenging road that VEPTR kids and families face.

Saying goodbye yesterday to Isabel was very difficutl.  For the past 1-2 weeks, Lilly has been struggling with anxiety, likely tied to tomorrow's surgery, and her anxiety resulted in disrupted sleeo for both the girls for the past few weeks.  Isabel has grown more and more anxious about our departure as the time drew near, and it was hard to see her sobbing as we left, pleading "don't go, Mommy! Don't go!"  Makes me wonder if this goodbye--even if only for 4 days--somehow evokes implicit memories for her of her abandonment at age 3 1/2.  Breaks my heart.  Thankfully Tom was able to keep her happily distracted playing outside yesterday after our departure, but he reports that she was upu at 4 am, fully dressed, this morning, and hasn't really gone back to sleep since...likely wrapped up in her anxieties.

So I'm asking for your prayers for both Lilly as she preparse to undergo surgery, as well as for Isabel (and those caring for her) back home.

For Lilly, we are praying for a smooth expansion, wisdom for Dr. Campbell, relief from the mystery itchiness and hives she typically suffers post op, and no infection as she heals.  For Isabel, please pray for peace in her heart, security in our home with Daddy, Jared, Anna, and our dear friend Becky who will come to help her get out the door to the bus in the morning and help with homework in the afternoon.

Thanks for reading and for caring for our family.