Sleeping Beauty

Hi Angels!  We hope you are all surviving the summer heat!  Caroline has been staying in the A/C as much as possible!  As we have been crossing a few hurdles lately, I wanted to give you all a quick update and ask for some prayers.  For the past few weeks, Caroline has had a low heart rate and a low temperature when sleeping off and on.  In a diligent attempt to find what is going on with our little love bug, several tests have been run.  We started out with the cardiologist who sent us to the our breathing doc!  Breathing Dr. ran tests that all came back pretty normal, so he suggested an MRI.  Thankfully the MRI looks the same as it did back in 2012!  (Great news)  We also did some lab work to see if anything came up with her thyroid.... normal.  (I was kind of hoping for that one- easy fix)  Basically, so far we are at a loss.  I had to make a call to Caroline's surgeon at TCH today that I really did not want to make.  He was meeting with the multidisciplinary committee to recommend Caroline for her rod surgery.  This surgery was recently put on hold due to C's complex background.  Unfortunately, with the recent issues she has had, surgery is not a good idea.  Anesthesia is never easy for our girl and neither are pain meds.  We have no desire to mix the two of those things with an already low heart rate and temp.  As we work to find further answers, the Wleczyk clan is hanging close to home and soaking up some very precious family time since our time as a family of 3 is about to change!  :)  Any outings seem to leave Caroline extra tired and she is needing a longer rest period afterwards to recover from any unusual activities.  Even car rides seem to tire her out.  Although this post isn't my favorite to make, we are still having lots of great days mixed in!  Last week Caroline was awake and alert most of the week!  Today she slept until 2:00pm.  As i've said before..."this girl keeps us on our toes!".  We have decided to cancel all activities that require her to leave the house at this time in an attempt to give her the rest she needs and to give us time to try and put these puzzle pieces together to figure out what is causing her sleepiness!  What a blessing that we were able to go on her Make-A-Wish trip before any of this started!  Thanks for praying for our Sweet Caroline and her doctors and caregivers!  We are so blessed to have such a great team working with us.  We are looking forward to getting answers and being out and about again soon!