What a wonderful world

My little Lu, you are in middle school!  Where has the time gone?  I remember your first surgery, so clearly, when you were just 1 month old.   You were having trouble swallowing and breathing so the doctors said we had to add a feeding tube to your belly because your little body couldn't swallow properly.  This happened over Memorial Day weekend so we had to wait 2 long days until they could do that surgery...2 long days of you being so hungry and 2 long days of my heart being crushed as you cried for your bottle of food...But you have been doing so well since.   2021 and 2022 had some very rough times though.  One time you had a big ugly infection in your body, then many (six!) viruses that turned into pneumonia but alas 2023 has been pretty darn great.    However...your body- your spine and your hips are not doing well.  We are hopeful for comfort and the least amount of pain possible but I know what lies ahead won't be easy.  The scoliosis in your spine is at about a 60-degree curve, up 20 degrees just from last year. The doctors agree that is it time for spinal fusion.  Sigh.   And your hips, those hips.   We have opted to not intervene with the not-well-formed sockets because you did not show signs of pain, but now... are you in pain sometimes when you cry and we aren't sure why?  Will it get worse? Will we make the right decision?  Will hip surgery make it better or worse... it's hard to know..  The decision is not an easy one.  I hope and pray we do the right thing.  It's September 22, 2023, and the next 12 months could turn into a big year of spine and maybe hip surgery.  No hip hip hooray in that.   It's going to be tough, that is for sure.

But!  You!  You have been so full of smiles and even giggles too!   So often your smiles were few and far between.  Remember how you would hold onto them and release them only when you felt it was time, your time?  Maybe it was once a day or maybe just once every few days.  Remember when we sang to you on your 5th birthday and you shared the biggest, most beautiful smile for all to see as we brought your pink cake with candles to you??  That was magical Lu! Like a gift from God.  You saved those smiles and when you would share one it would melt me to the core.  And now!  Now your smiles are through the day, and giggles galore.  Lu, thank you little bird for lighting up our days with your smile, and not being afraid to share them with the world.   Your happiness is all we have ever hoped for you and you are sharing it daily. 🩷🩷

I just wanted to say thank you and put it right here on your blog, from quite a while ago.   Thank you for continuing to share your love and light of smiles and generously now!  Know, our Lu, that we will always be beside you and will try our hardest to make the best decisions for you and your sometimes broken body.   Every single time. 
 

I see trees of green, red roses too, I see the laughter and love on you, Lu. And I think to myself, what a wonderful world...