Miss Mia Medical Update

I've found some new friends.  Or rather, they have found me.  Through a shared link, I "met" a woman living in Boston who has adopted four girls from China, two of whom have beta thal like our precious Mia.  She hooked me up with a FB group of families with children from China with beta thal.  Such an awesome resource!   They talk about treatment goals, medicines used, symptoms experienced, how often they're scanning iron levels, and how beta thal is impacting their children's lives.  They are currently working to organize a week of camp in Maine for children with beta thal.  There is a camp there that currently hosts different weeks for other medical conditions, including another form of anemia.  The family we traveled with to China has been there twice with their son and LOVE it!  We think it would amazing for Mia to meet other children like her in many ways.  How awesome would it be for her to know is not alone!  The Information Age has a lot of downsides, but there are up sides, too!

She has been going for weekly blood draws to check her white cell count.  The "stat" stamp on the requisition reminds us of just how significant her medical condition is.  She looks like just another beautiful child, but inside there's something very wrong.

Next week, she'll get her draw at the hospital and they'll decide from that count what we will do next. We are wondering if perhaps a venture to Children's Hospital in Boston would be wise at this point.  If nothing else, it would leave us with the assurance that they would treat the same way as our hospital here.  We were there years ago for Mia's initial consult.  With our hematologist moving away last fall, we've been assigned another, but second opinions are always good!

For Christmas, a special relative gave Mia violin lessons to add some a pleasant distraction through all the medical challenges and the blahs of the northern winter.  She is loving it!

"Children are not a distraction from more important work.

They are the most important work."

Sally Clarkson

The Day the Rabbit Died

Saturday was a day full of memories.  It's become a family tradition that every Saturday R takes one of our children out for breakfast.  There's a diner right by Violet's art studio so while she takes her Saturday class (her Christmas present from a sweet relative), one of the kids gets one on one time with dad.  It's a time to talk about everything or nothing, big or small.  This week, our 13 year old invited me to go along.  Normally, I'm taking Mia to violin then, but this week I happened to be free.  He put his arms around me and said, "Come on, Mom...it'll be just the three of us.  How awesome is that?  And you LOVE breakfast food!"  A truer word was never spoken.

Side note...It was National Pancake Day today and I did not know.  Oh the griddle cakes we would've consumed had I only known such a thing existed...

So lovely breakfast with Joseph.  Then we scooped up the girls, goddaughter Grace and Mia's best friend Kailey, and headed to the University of Connecticut for Panda Playgroup, this cool program run for adopted kids by Chinese students on the campus.  It's fantastic!  Each time is different...games, stories, crafts, snacks, and cultural stories.  This week was all about pandas.  The students work in small groups with the kids, giving them oodles of attention.  There are several Asian children in our church, as well as a handful of Chinese adults, but we think it's important for them to have as much interaction with Chinese women as possible.  We had a wonderful time, but as we were leaving...

we got a call from our oldest son.  Gabe could be heard screaming in the background.

Poor Nehemiah, beloved bunny, had unexpectedly died.  We found evidence in his cage later in the day that he had somehow become sick and quickly passed.  Gabe was heartbroken.  I mean heartbroken.  In church yesterday we read something that had the word death in it and quiet little tears slid down his cheeks.  He. loved. that. rabbit.

We had been saving a restaurant gift card from Christmas for a special occassion.  After church, we surprised the family with a dinner out to celebrate Nehemiah's life.  We were so proud of the kids.  Their lights were shining.  And the biggest?  They were awesome to their little brother.  They knew just how much he meant to Gabe.

We did have a dilemma.  What do you do with a bunny's body when it's Snowmagghedon in New England and the ground is frozen up?  Burial not possible.  Research online suggested storing him in our freezer until the ground thaws.

Wasn't going to happen.  I am so tempted to make a joke here about cooking the wrong meat into a stew but surely someone would be offended.

Thankfully, Gabe's grandparents had a few minutes to do some researching while we were in church and found a rabbit care organization that helps provide arrangements for this kind of thing.  Today R and Gabe took Nehemiah to the vet to be cremated in preparation for burial this spring.

Still makes me sad to think about him carrying his little paper box, stroking his white fur, giving him to the receptionist.  Gabe was quiet and brave.  Tonight his good friend showed up at the door with handmade cards and a little paper crafted 3d rabbit to put in his shadow box.  In between tears this weekend, Gabe looked up at me and said, "I bet God can't stop smiling when he hears Nehemiah sneeze.  It's just so cute."  Be still my beating Mama heart.