Four Transfusions Together

Day before Thanksgiving we had a first...

All four kiddos got to be transfused on the same day!!

Normally we do two and two, girls day and boys day.  Our clinic has been concerned about doing all of them at once so we haven’t pushed it, even though this has always been a future hope.

We are so so thankful for the care these kiddos are getting, and we can see such a huge difference in Lily and Noah compared to when they came home almost two years!

Thankful for our doctors and nurses and blood donors that are keeping our kids healthy!

More than 450

It was said today and I just keep hearing it...

There are more than 450 children with thalassemia here in Yulin, Guangxi, China.  I believe it because the last 3 days we have traveled all around this area meeting these children, hearing their stories, and learning all the difficulties that they face in treating thalassemia here.

Today we held a thalassemia outreach clinic.  A large number of children and their families were there to learn from a thalassemia expert how to better manage treatment of their children.

Dr. Berdoukas provided an important presentation to show them the effects of minimal transfusions and chelation.  He encouraged them to make sure the children receive proper care and showed them what proper treatment should look like.  He empowered these parents to seek good care for their children so that they can grow up happily and healthfully.

And once the presentations were over, it was time for fun & consultations.

These families were thankful to get the information they need and want to follow it so that their children can be as healthy as possible.

But, there is a blood shortage. Not enough blood donations to keep up with the demand means that these children often wait, not weeks, but months for blood to be available for them.  They are in fact, waitlisted, for blood. It seems the longest wait is for type O+ blood, which is the most common blood type in America and baffles me every time we’ve been told how long a child has been waiting for the call.  Here it is a more rare blood type.  We want to help but we know that the answers to this are not easy ones here.

Please be praying for this situation.  Access to blood is vital to the health of these kids.  We hope that the opening of a blood bank just for thalassemia children will help, but there is much work to be done to ensure these children have full access to the blood they need, just as our children in America do.

And please pray that my scratchy throat doesn’t grow into anything because tomorrow a few of us are headed to the hospital to donate blood before we leave. 😉

It was a good day today.  We saw lots of smiles and it was good to see thal mamas and babas here in China continuing to build relationships like the ones I have with parents of children with thalassemia back home.

Knowledge will help these parents to be their children’s best advocate! Hopefully we did that today for these parents.  Given how many I saw pulling out their phones to take pictures of the PowerPoints, I think we did! 

What a blessing to be here in China providing support to the families of children just like my own.  My prayer is that these families find the resources and support they need so that they never have to make the decisions that my sweet babies’ parents had to make.

Goodnight from China!

18 Months With Noah

A year and a half ago this sweet boy walked into the civil affairs office in Guangzhou and didn’t seem quite sure of us!! We are no longer a small family and he seemed a little unsure of what this thing called family is...

In fact, he didn’t even give this Mama a kiss until day 56.  Up until that day, each night I would ask if he wanted to give mama a kiss and he’d shyly shake his head no. ;)

But it turns out, this boy, as standoffish as he started out, is now the most loving little guy! He loves his family and he is everybody’s buddy.  He tells everyone that Chengbin is his best friend, and we have no doubt about that!! They even sleep together just so they can chat a little longer at bedtime anytime we say they can.  (They ask every night!)

Noah Hongjie is just such an incredible little boy. I can’t believe we have come so far in 18 months.  I honestly thought his attachment was going to be the biggest challenge we had experienced.  Thank God that his Daddy was home with him for that first 8 months, I really believe it made all the difference for him.

And now we can look ahead at our hopes and dreams for where he will be another 18 months from now.  :) What a great place to be!!

Noah Hongjie we adore you dude! You are an awesome kid and we are so proud to be your family.  You are an amazing gift from God & we love you with all our hearts!

Hello Summer!

Summertime has arrived and we have been enjoying it!

Our first summer trip was a day trip to the beach, a few weeks before school got out so the beach would be a bit less crowded! Ft Walton Beach to be exact.  It was gorgeous!!! For some strange reason we’ve never made it that far to the east to hit the beach.  Kate & I actually looked at each other like ‘what have we been doing all these years??!!’ Haha!

This girl, she is wild and crazy and unafraid to completely cover herself in sand.  It cracks me up!!  And since she’s a little wild and crazy in the water, staying in the sand is just fine by me.

We had crazy clear water and it was shallow pretty far out so two of the littles excitedly got going on their first attempts at boogie boarding! They loved it! Laila stayed on a board 90% of our time there. So funny!

Kate & Bin had a blast too, boarding and just enjoying the waves.

So in spite of the long drive to this beach, my kids gave it a resounding 5 thumbs up and asked if we could come again the next day. Haha!

Man, I really do want to go again tomorrow... time for another beach day soon!

Wordless Wednesday

This might be my favorite picture from 2017! :)

Kate's 12th Birthday

This girl has grown soooo fast! And even though her birthday was in August, we had such a great day and I want to make sure I capture it!!

For lucky number 12, we had one big goal----- to make sure she finally joins the Star Wars Jedi Academy before it's too late!! ;)

So we got her up bright and early to be at Hollywood Studios at park opening so that she could begin her training!  Honestly, she was probably more excited that she and Chengbin would be doing it together!  This is something they've talked about and dreamed about for years now!

As we entered the park, we saw the First Order marching through, and that made us even more excited for this big day!!  Unfortunately, when we got to the sign ups, Chengbin got nervous, freaked out, grumpy, obstinate, and informed us that he no longer wanted to do it.  Kate agreed to do it without him, but she was truly heartbroken (which made me heartbroken too for both of them)!

In the end, she summoned up her desire to be a Jedi and pushed through her sadness. ;)

Let's face it.  It's hard to train to be a jedi without the joy of it smacking you right in the face!

And when Darth Vader makes his way out to challenge you...

You give him that great big, beautiful smile and ensure that the light side always wins!!

And as he leaves, she gives him the look that says "I'm not afraid of you!"

What a great 12th Birthday!! We love our growing-up-way-too-soon girl!! :)