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!! :)

Graduation for TWO

Wednesday was Graduation Day in the Wilks house! 

Our adorable girls were almost side by side since their awesome teachers think about stuff like that! ;)

As they walked in quietly and calmly to get onto those riders, Lily saw us on the front row and ran to us.  She had the biggest smile as she said 'Daddy!'. It was absolutely precious and made her sweet teacher tear up! After that she walked over and got in her place...

They sang songs and then received their diplomas...

And we were so proud of our sweet girls!! And so amazed that God has blessed us all with them!!

Now it's time to spend summer together and have some fun!!! 

Congrats to our sweet girls! Liliana & Laila, you girls are overcomers and have come so far! We love you both and we are so glad you girls have each other, today and for always!
 
 

 

5 Months with Noah

And now it has been five months since Noah Hongjie became a Wilks!

5 months ago we met this shy, quiet little boy and he barely smiled.  He wasn't sure about us at all.  Once he got used to us a bit, he seemed to think we were okay, but he really thought of us simply as the next nannies to come into his life.  He had no concept of family.  He also had a really hard time being told "no" and we learned pretty early on that this little guy is a very, very stubborn guy.  In China, we talked over and over again about how easy Lily was and how hard Noah was. 

Boy were we wrong!

It turns out that once he got settled in, this little boy is funny, sweet, & a pretty happy-go-lucky boy.  I mean, don't-get-me-wrong... homeboy can throw. down.  Occasionally, we still see that stubborn little boy emerge who wants it his way or else we will allllll pay.  Overall, though, we don't see that many fits from him.  He doesn't say mean things to us.  He hugs us and tells us he loves us and he is just a very happy, chill dude. 

When he got home, we decided that the best thing for him was to stay home with Daddy.  School could wait, he first needed to learn about family.  He needed to learn that his mommy and daddy and siblings are different than his nannies and orphanage classmates.  He needed to bond with us, attach to us, and have months of repetitively having his needs met before he would be ready for school.  We are so glad we made this choice!  We are so glad Matt said goodbye to his Coast Guard career to be a full-time Dad.  Noah needed him and Noah has made huge leaps in every area because his daddy put him first and chose to stay home.

When he came home, he was in pretty rough shape on the medical and dental side.  He had a very large, very hard tummy; the result of poor thalassemia care and malnutrition.  After taking care of his immediate need for transfusions, we scheduled dental surgery.  This poor little guy had a mouthful of teeth that truly resembled a coral reef.  We're not sure what the cause was, but he had to have a lot of extractions, caps, & fillings.  A few days after his surgery he was looking in the mirror and pointed to the silver on his teeth.  He told me "Mommy, I like this.  It like pirate!" Haha!!  Since coming home he has also been eating on demand.  And he demands food a whole lot. ;)  It's not that he's truly hungry, but as a child who has known hunger, he fears it.  We've adjusted the snacks around our house to provide some healthy, low calories options just for him to have throughout the day as his fear sets in.  We want him to know that we will always meet his need for food and hopefully in time, that obsession over it will start to loosen its grip.  The side effect of all the eating and fresh blood transfusions is that his belly has shrunk and he's already grown over 2 inches since coming home!  We are really hoping to see this growth trend continue, as even after adjusting his birthdate to 5 1/2 years old, he will still not be on the growth chart for his age.  Grow buddy grow!!

Noah Hongjie has come a very long way in this first 5 months.  He will be ready for school this fall.  He's attached.  He understands what Mommy & Daddy & Family is now!  He loves his family and we love him.  Yes, he fights with his sisters and is fully immersed in the sibling rivalry around here alongside Laila & Lily, but that's okay! We just can't wait to see what the next few months bring for this little guy.  I can't believe he waited so long guys!!  I just don't understand why so many boys with thalassemia, just like him, are waiting right now.  If you knew this kid like I do, you'd be lined up for those boys I tell ya! ;)

Noah Hongjie, you are the cutest, sweetest little guy.  You have a long way to go, but you've already come a really long way from where you were.  We are so lucky and blessed to be your forever family.  Happy 5 months a Wilks bud!  We love you and can't wait to see all that God has in store for your life.