Monday, February 17, 2020

{Two for One}

The title may be a bit deceiving but the truth is the same...we went in hoping & praying for ONE good report and we ended up getting TWO! 

There's a couple ways to look at the way this day has gone...and I'm choosing to focus on the good...the immense blessings...and the incredible ways that God once again revealed His sovereign hand.  

My Panda girl and I were up at 5:30 and out the door just after 6 this morning.  The Cooper River Bridge was quite a treat in the early morning glow and its highest peaks covered in the clouds.  Panda was super happy and kept telling me over and over how she couldn't wait to see pictures of her brain and heart.  I kept telling her over and over how we were only seeing pictures of her brain today...her heart appointment, however, wasn't until May. 

Hardly a soul in the parking lot & wheeled right in and right back to the pre-op holding area.  Child Life is amazing...I had my bag of tricks packed but they had the craft section covered and my girl was blinging out birdhouses in no time.  

All seemed to be coasting along until anesthesia swung by...they had some questions and were just not okay with putting our girl to sleep with the small chance that some kids with Noonan Syndrome do develop cardiomyopathy {and she hadn't had or needed an echo of her heart in a couple of years}. Looks like Panda was right and we were going to see her heart today, too! 

So, they called to the Peds cardiology clinic {that was currently closed} hoping to somehow fit in an echo at dark-thirty when I got a text of a "virtual hug" from a dear friend whose husband is one of our Peds cardiologists. {I have so many sweet memories of our first girl with him...and the jokes we loved playing with her shoe socks in the ICU.}  I told his precious wife what was going on and she replied he *just happened* to be on the way to the very location we were at to read echos for the day.  In the midst of an already hectic day, he squeezed my girl in right away which had us packing up and heading to cardiology for the moment.  About 30 minutes of jelly on her belly & a very patient tech enduring my girl singing Moana at the top of her lungs and we were on our way back down to pre-op.  

Dr. Forbus, whom we now swear to name our 6th child after that saved the day for us, read her echo and gave us a report that blew me away...PERFECT.  Her echo was "perfect".  

Thank you, Jesus.

Moana on the television was the perfect distraction! :) 

  Then...back to pre-op...back to getting ready for meds and imaging and seeing her surgeon. Child Life came by again {BLESS THEM!} and had more goodies for my girl!

Therapy dogs too! 

We got bumped in the MRI due to that little hiccup so we had a wait but my girl was happy... and, as long as she was happy,  I was, too!

AG's little pink marker smear caught my the perfect shape of a heart. :)

Once it was time for her mask, we rolled back & I held her on the table as she cut her eyes at me and smiled taking that mask like the bravest girl I know.  She had practiced at home with an old mask she has and was wow-ing us all!  She slowly went to sleep and I stepped out letting them get to work on her IV and the MRI.

The procedure took a little over and hour and then she was in recovery.  She was given more meds than usual so it took a loooonnnngggg time getting her to wake up.  As in, I was in there an hour before she flinched at the sound of my voice...and usually she's up in 10 minutes and asking to eat.  We learned which drug NOT to give her next time. 

After holding down some juice and getting her dressed, we loaded back up and headed to Peds neurosurgery to get the report...the second one of the day! 

The smile was so big on Dr E's face when he walked in I already knew it was good...but I had no idea just how good. 

Her syrinx {fluid buildup in the spine from the cerebellum & chiari getting in the way} was GONE.  Zero evidence of it ever being there.  It had drastically reduced at her last MRI but still had a tiny bit left.  This shows nothing.  Furthermore, her patch on her brain is holding up beautifully! 

AG absolutely adores her Dr. E.  She hops right in his lap every time and asks to see his necklace {that has a really cool story behind it}. 

We needed answers and clarity and now we have them.  The symptoms she has been experiencing are directly related to Noonan Syndrome...but anything that requires surgery is out of the question!!!

The Lord has heard our prayers and HE IS GRACIOUS.

We heard the words "perfect" and "beautiful" over and over today...and I couldn't agree more.  God has made my daughter in His image...perfectly...beautifully....fearfully and so very wonderfully.

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