Tuesday, January 8, 2019

{Day Trippers}

Our precious Panda girl had her annual clinic visit with her pediatric neurosurgeon today at MUSC in Charleston.  This year we did not have to have a sedated MRI since her imagining has looked so good in the past!  She received a glowing report and every concern that I had he completely validated.  He was already thinking we need not go two years between imaging so she'll be due another MRI next visit...hopefully just for peace of mind although it never hurts to take a look just in case.  Her strength was better and the strides she's made since surgery...miraculous.  Her incision is spreading a bit as we knew was a possibility with Ehlers Danlos {yet another fun syndrome we added to our list a few years back} but Dr Eskandari and I agreed that it's not worth the risk to send her to plastic surgery just yet.  For the most part, it's covered up and there's a chance that messing with it just will make it worse.  Besides, we are rather proud of our scars around here!

I have never once doubted our decision to pursue Dr. Eskandari for AG's needs.  Naturally, MUSC was at the top of my list being that we have amazing connections and resources there...but before Dr. E they weren't really known for being at the top for Peds Neurosurgery.  I had heard that MUSC had a new surgeon and that he was making waves in the best way but still I looked into Duke, Sanford, Johns Hopkins & Boston Children's just to name a few. I found over and over again the best surgeons in the world recommending the surgeon just a short two hour drive down the interstate.  We met with him and were immediately impressed with his knowledge of not only chiari but her other needs as well.   And then the surprise she gave him in the OR, proved beyond a shadow of a doubt that we had made the right choice.  He was precise and patient.  He saved her life in that moment where she easily could have bled out.  There was no explanation for it and she should not have had that pool of veins in that location whatsoever.  And then he continues to have the most gentle clinic and bedside approach...where my daughter jumps in his lap and has no fear at all of him...playing with his "Heart of Tafiki" style necklace and getting him to color Ariel photos with her.  And then he asks about the emotional stress having medically fragile children has on a parent...and how he can help educate and enlighten others in similar situations.  His level of care goes far beyond his more than impressive abilities in an operating room...and he is building an incredible program that we are blessed to be apart of.

After our time in clinic, we got a short & sweet visit with our favorite "Nurse Joy" and then headed off for lunch.  AG only requested lemonade from Chickfila so that's where we headed.  We then took it to the beach for a picnic and pictures.

If nothing else, all of our appointments in Charleston throughout the years has taught me to enjoy getting away for a day...even if it includes things like neurosurgeons {albeit ours is amazing!} and the most frustrating parking garage I've ever encountered.  God has taught me to slow down a little in these spaces and really savor it.  So there was no rushing back home even though it would be a pretty easy thing to do.  Instead, the girls team took to the town and opened the sunroof...it was a gorgeous 75 degrees and sunny...and we were all sweating in January.  What a treat!  We were gifted with warm breezes and butterflies as we arrived to Sullivan's...our favorite island to release balloons to Heaven for Annabelle by the lighthouse for many years.   The girls held hands and ran along the boardwalk and I followed behind in awe of what God has done.









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