Two for Transfusions please! Thal treatment for two- An Update.

Last year I posted some great in-depth blog posts about Chengbin's thal treatment:

Port Surgery:
http://crazylifeofthewilksfamily.blogspot.com/2013/10/the-next-step-port-surgery-today.html
http://crazylifeofthewilksfamily.blogspot.com/2013/10/port-placement-transfusion-update.html

Transfusion Days & General Thal Information:
http://crazylifeofthewilksfamily.blogspot.com/2013/11/all-about-thalassemia.html

Medication:
http://crazylifeofthewilksfamily.blogspot.com/2013/11/exjade-finally-arrived.html

& Trips to the Thal Center in Atlanta:
http://crazylifeofthewilksfamily.blogspot.com/2014/06/doctors-animals.html

Since then I've been SO glad to receive A LOT of inquiries about life with thalassemia, kids available for adoption, sorting out insurance coverage, reviewing files to help families considering these kids, etc.  It has been AWESOME!!!  I seriously LOVE helping families find the child meant to take their last name and find their forever family.  And I LOVE thal kids!  Seriously, there's a deep love for these kids.  They are amazing, wonderful kids who have such a bright future ahead of them with proper treatment.  And sadly, such dire circumstances and a deadly fate await them without proper treatment.  My two thal kiddos are such an incredible blessing and so many kiddos are still waiting to bless the families they will be adopted into.  So it's about time I tell ya'll what thal treatment is looking like for TWO! 

We've done transfusions for them separately a few times and now together twice.  Here's the breakdown of our latest trip to the Infusion Center on Friday and how it all works now that we have two of them.

7am- Leave the house for Nemours.  It's about an hour away, plus this Mama needs Starbucks for sure before a day in the transfusion bay with two!  Before leaving the house we put on our lidocaine cream.  Chengbin gets it on his port, while Laila gets hers on both hands since we won't know til it's time, which hand is looking better for the IV start.

7am-8am Messy lidocaine gets ALL over Laila!  She manages to move the press & seal that is covering her lidocaine, so before we know it, her doll is covered in lidocaine, her toy cup has some on it, and she's wiped some in her hair, on her forehead, and on her clothes just for good measure! ;) 

8:10am We arrive and are brought back right away to access the kids and send their bloodwork off to the lab.  Some thal families bring their kids in a few days before to get their bloodwork for transfusion day, but given our distance from the hospital, we do it all in the same day. 

 

 

Chengbin gets his port "accessed" and then it gets sealed up and covered so he can play & be a kid while we wait for the transfusion.  This usually goes very smoothly, though every so often it'll be a rough access day.  This one actually was rough, but he is such an amazingly resilient little guy who just does his best to move on and be happy, no matter the circumstances. 

Laila just received a port this week.  Before receiving the port, the nurses decide which hand is looking best, warm it up, and then attempt to place an IV into her hand.  This didn't usually go well for Chengbin before he had a port, but Laila has had so few transfusions that so far the nurses haven't had much trouble getting her IV line in.  Thank God for this!  They then put her hand on a board and tape it all up so that she can play and not worry about knocking out the line.  I have no pics of her getting her IV line because she sits on my lap eating cool ranch doritos with one hand while they try to put a line in the other hand. ;)  I will say that she is an amazingly brave girl who is very patient and doesn't even flinch- as long as she can watch them do it & eat her snack at the same time.

We visit the hematologist and then wait for blood to arrive from the blood bank.  On this particular day we decided to go grab some food before the blood arrived.

At 10:45 our blood arrived and both kiddos were started up by 11:10.

Some playtime, okay- a LOT of playtime...  (Thank the Lord for Child Life workers & hospital volunteers who help to entertain these kiddos while we wait for blood to drip!! Haha)  Multiple trips to the potty... A couple snacks later and...

 

(This is the "Mama- help me get to potty" look!! Haha!!)

3 hours later they were all fueled up and ready to go!!

This was a best case scenario day!  We were out of the infusion bay and on our way home before 2:30!!  But even on our rougher days when the hospital backs up the blood bank and we wait longer for blood we are usually out by 3:30.

Another hour long drive back to the house and we were all set for another 3 weeks! :)

So that's what transfusions for two looks like right now.  As they get older, the transfusions will get longer.  They may not always be on the same schedule.  And when those days come, we will adjust as any family would.  But I am SO GLAD to have these two sweet blessings.  I am SO GLAD God brought them to our family!!  And I hope that this information will help other families who are considering whether or not they could handle a transfusion dependent thal kiddo.

We are SO blessed!  Email me with any questions at mepscoastie@yahoo.com.

Thanks for Stopping by,
Fannie, Matt, & the Kiddos

All done!

Well, her surgery is complete and our surgeon placed her port in a 'girl friendly' location- which was important to us.  Thank God for a surgeon willing to hear me out and go the extra mile for our girl!

BUT... I would be lying if I said that this port isn't still shocking to see.  She is a tiny little thing and it sticks out and looks huge.  And while this was necessary and very well thought and prayed out, it is still very shocking to us how big the port looks.  Please friends pray for healthy healing and minimal scarring for our girl.

So grateful that God gave us this sweet blessing to love and care for!!

Blessings,

Fannie & Matt 

Surgery for Laila

Today is Laila's surgery day to receive her port placement.  This will allow her to have '1 stick' days during transfusions and make things more routine for her on her transfusion days.  Chengbin's port has been such a blessing to him, so we are sure Laila's will be the same.

Please say a prayer for our girl.  She just went back to anesthesia.

Thanks!

Fannie & Matt 

2 Months With Laila

Two full months.

62 days this little girl has been with her forever family.

And what an amazing two months it has been!!

 

From frightened, grieving baby to happy, joyful little firecracker with one heck of a stubborn streak!

She is just such a little firecracker!! We are still figuring her out a little bit more day by day...

 

Her smile is BIG!! It can just light up a room!! :)
She gives hugs & kisses to everyone in the family.

Knows the first two lines of our 'night night' song.

Loves to take a bath.

Loves to have Mommy fix her hair, but prefers Daddy for getting dressed, putting pajamas on, and for 'eeeee' (brushing her teeth).

Has a preferred person to put her shoes on (still calling them "zee hihi"), but will really allow anyone to do it so that she doesn't have to.

Follows Mommy around at the busiest moments insisting she needs picked up.

Enjoys playing with both Katie & Chengbin.
Chooses someone who should help her eat at each meal because seriously, it is too much work to feed herself ALL of it... lol

Does NOT want to take naps (but still needs to).

And if any of these things she enjoys aren't handled to her exact princess specifications she WILL let you know about it.  And if you try to make her take a nap the same... Cue the scream then tantrum. ;)

 

Daycare is finally starting to get better after three weeks.  She's become more secure that Mommy will come back.  She also got a new teacher that she really likes this week so I think that is helping.

Thalassemia treatment is going well.  She has received three transfusions since coming home and her body is starting to settle into them so that she can soon go to a 3 week transfusion schedule.  We've also seen the pediatrician to get our oh, so many referrals and had an echo & EKG for her heart.  So far, we know that this little one is teeny, tiny and delayed yet is also smart and capable.  Most of her delays are due to the extreme exhaustion that comes with non-transfused thalassemia major.  When every breath is a struggle, things like walking & talking become far less important.  Her Nanny clearly loved her and carried her around, knowing that she was just too tired to do much else.  We are SO grateful she's home!! 

We still have eyes, ears, endocrine, physical therapy, speech therapy, occupational therapy, & a trip to Atlanta's blood disorders clinic to go... (Sigh). We just want to make sure we are covering all our bases to ensure she is tracked and intervention can be made, if necessary, to help her reach her full potential.  In the meantime we are enjoying family time, keeping life small, and enjoying getting to know this sweet little girl.

 

And language, I know many people have asked us if she talks and what she can say...

Well- she can repeat almost anything word for word, but so far speech has come slowly.  She knows most of what we say, but only expresses a few words on her own...

Her favorite is 'no' (of course), but she also says bath, shoes, hot, kitty, hi, up please,  bye bye, & see you soon.  She is starting to say more words just over the last few days.

We are blessed!!!  Amazingly blessed!!!  And wondering what God is up to with this little one.  What plans does he have for her?  I have no doubt they are going to be great!!

Happy two months of forever baby girl!!  Your forever family loves you SOOO much!!

Thanks for stopping by,
Fannie, Matt, & the Wilks Kiddos

2... 3... 4... How much longer??

I'd like to share a story about a little boy.  A boy who was "almost" my son.  A boy who has been waiting for over 2 years for a family to choose him.  To be his forever.

You see, when he was 2 his paperwork was filed.  And we read his file and saw his sweet face.

 

And as we looked at this sweet boy, so young and adorable, we thought FOR SURE he would find his family.  And our Chengbin was already turning 5 years old and might not.  So we prayed and felt confident that we should submit LOI (letter of intent to adopt) for Chengbin.

 

A few months later, a fellow thal mama visited his orphanage and took this heart-wrenching photo of him.  He was nearing 3 years old.  And still waiting...

 

 

My heart shattered.  This sweet boy.  This beautiful boy.  Those eyes.  The sadness.  It overwhelmed me and I promised myself I wouldn't forget him and would do all I could to find his family.

 

And then his file disappeared.  My agency no longer had it.  He wasn't on the shared list of waiting children either.  No other US agencies had his file.  It was gone...

And I prayed it was because a family somewhere in the world had chosen him.

I prayed that he was about to become someone's son.

And I continued to wonder what happened.  I thought about him and prayed for him for 1 1/2 years.

 

Then, a couple weeks ago, one of the caseworkers at our first adoption agency sent me the file of a little boy new to the agency's list.  She was hoping I'd help advocate for him since he had thalassemia.  So I scrolled down and read the name on the file...

 

It couldn't be!  I recognized that name.  I opened the picture and there he was again.  The sweet little boy who I thought was SURE to find a family.  The one who had disappeared from the list.  The little guy I have been praying for for a year and a half.

 

And now he's 4 years old.

 

And still waiting for his family to come...

2 years old, 3 years old, and now 4 years old and still waiting for his family to come.  How much longer will he wait?

I am continually praying for this boy.  Many times each day.  His picture is on the lock screen of my cell phone, so many times a day I see his face and say a prayer.  A prayer that this time he won't be lost.  A prayer that this time his family will say 'yes' and run to him.

Are you his family?

 

There is a $4,000 grant toward his adoption.  I'm happy to talk to you about beta thalassemia major and life with a thal major child.  Please ask me about him at mepscoastie@yahoo.com or contact Lindsey with WACAP at LindseyC@wacap.org.

Blessings,

Fannie

 

5 Weeks With Laila

Hard to believe, but it's been over 5 weeks since sweet little Yuewan (pronounced you-a wan?)  was grabbed up by this mama.  She was a teary eyed, scared and traumatized baby girl.

With each week she has gotten a little more comfortable & attached.

First to Daddy. Then to Mommy too. Then to big sissy.  And then also to Chengbin.

In fact, we've decided that Katie might be a baby whisperer.  Laila can be in a screaming bloody tantrum and Kate can put her hands on the side of her face and she calms & quietens instantly. Perhaps Kate's dream of having a daycare like Miss Crystal will become a reality one day. ;)

So I thought I'd take a few minutes to tell ya a little bit about this kiddo...

She has changed A LOT from the personality the orphanage director described...

The director said that she would always over eat and get a stomachache. Not now!  This girl is quick to tell us 'no, no, no' when she is finished and gives us her little shaking hand gesture too! :)  While she was still receiving many bottles of formula a day in the orphanage and a bowl of congee- this little one will eat almost any solid food that is placed in front of her!!  Though she's not a fan of anything with tomato.  She'll eat her weight in watermelon though!!

The director also told us that she wasn't very happy and was usually quiet.  She said all the Nannies joked that the only way to get Yuewan to come to them was to bribe her with candy.  (I admit, we did witness that in a video from the orphanage!)  Aside from during her grieving process, we have found her personality to be VERY different than described!  This girl is an adorable little crazy kid! She smiles & laughs all the time.  Even at our church she is finding her place and running all around, chasing her brother & sister through the crowd of people! She is only quiet in front of strangers for about 5 minutes before her goofy personality begins to shine through!!

We've learned a lot about this kiddo in the first 5 weeks.
And she has been learning just as much about us, her forever family.

We are so unbelievably blessed to have her!!

Oh, and did I mention that she is sleeping in her OWN bed?? 
Yeah, after four days home, she started clearing toys off of it to sleep in her room with big sissy and she hasn't looked back!  I think she loves feeling like she's a big girl too!

There's gotta be hard times going on right now too, right?? Well, yeah, you would expect there to be!  But so far, there really isn't.  China was hard.  Being at home?? Well, I don't know if we just feel experienced and roll with the tantrums and such, but it doesn't feel that hard right now.  Really, the hardest part is just juggling three kids and it really begins next week when we both return to work.  We'll see how we feel come next Friday!! ;)

Thanks for stopping by!
Fannie, Matt, Katie, Chengbin, & Laila
 

Boys- Who will go for the boys??

Lately I've been thinking a lot about boys...

Specifically the ones who are still waiting in orphanages around the world for a family to pick them.

Maybe it's because I missed Chengbin so much while we were in China.
Maybe it's because I know SO MANY families bringing home girls, but only a fraction in comparison bringing home boys.
Or maybe it's because there are two boys with thalassemia who have been on China's waiting child list for years, virtually forgotten, even by us thal mamas who say we are advocating for all thal kids.

But boys are AWESOME.

SERIOUSLY- If you don't think a boy can rock your world and change it forever, you should meet Chengbin.

He is funny and silly and crazy and rambunctious.
He can often be found light saber battling & force pushing anyone that is silly enough to indulge him in an imaginary match up!
Yes- even at church, I often find him right in the middle of a great Jedi battle of good & evil! ;)

Everyone who meets this kiddo adores him!  He's just AWESOME!!  And he gives incredible bear hugs!!! Hehe!!

 

I mean, come on, what girl is going to choose their own pose like this?

 

 

What may truly shock those who know him is that Chengbin, just like so many boys in China waited. 

 

His adoption paperwork was prepared when he was 3 years old. 

And for over TWO YEARS he waited in an orphanage every day for a family to choose him. 

He waited for someone to look beyond his age, his medical condition, and the fact that he was a boy and choose him. 

 

What would have happened to him if we hadn't have said 'yes'??  How much longer would he have waited?  I actually shudder to think that he might still be waiting...

 

After all, the statistics don't lie.  On China's Waiting Child List nearly 75% of the children who wait are boys.  Of all the thalassemia children on the waiting child list, only boys remain.  These boys...

 

"Oscar" is from the same orphanage as Chengbin.  He's been waiting for over FOUR YEARS for someone to pick him.  To love him.  To bring him home to be their son.

 

"Everett" has been waiting 2 years too.  He's beautiful and would be a delight for any family.  But he also continues to wait.

And sweet little "Judah".  Only 3 years old, given a $4,000 grant by WACAP toward his adoption.  But after a couple months, he too is still waiting.

 

And how I can't get "Jonah" out of my head or heart either, another sweetie with basically no medical needs that is from Chengbin's orphanage too.  Wanna guess how long he's been waiting for a family?  4 LONG YEARS.  This summer he even got the opportunity to come to America to spend time with a family, in hopes that as people got to know him, they would decide to give him a forever family.  And still he waits...

 

 

 

So the question my heart is crying out...

Who will go for the boys?  Don't they matter too??  Aren't they equally deserving of a family to call their own forever?  So many of them wait.  More and more everyday actually.

This little Master Builder, Jedi Extraordinaire has been the most unexpected blessing of my life!!!!  You see, our first adoption, I thought like many others, that we would be adopting a girl.  A sister for Katelynn.  God, however, had other plans and made it very clear to me that one of the little boys who were waiting were to be ours.  I thank God every day that he knew what a blessing Chengbin would be to us!!

Yes, I know that the girls need homes too...
and Yes, I too, just brought home a sick little girl who needed a family.
So if you are in process for a girl, please don't consider this a judgment.  It isn't.

But the boys are on my heart.  The boys are waiting!! LOTS of them!! 

"And whoever welcomes one such child in my name welcomes me." Matthew 18:5

CHINA BOYS ROCK!!! And so do Vietnamese boys and Korean boys and Indian boys and Ugandan boys and American boys and all the orphan boys around the world!! :)  Pray for one.  Foster One.  Sponsor One.  Adopt One.  You will never regret it!!!

Blessings,
Fannie Wilks

 



Our first family outing as FIVE!!

Okay, I know I've sucked at blogging lately...

I plan to do better and back up and tell the rest of our china stories, but reality is that life continues to move forward and we went on our first family outing as a family of five and I'm excited to share the pics and let you all see the cuteness!!

 

We decided to enjoy some time at a local pumpkin patch.  We were not sure what all would be there, so Chengbin was very excited to find this...

 

A real, coal-fired train took us out to the Pumpkin Patch!!

 

Each of the kiddos picked out their pumpkin...

Posed in their crazy way for Mama...

One with a little help from Daddy...

 

We decorated them, jumped in a bounce house, & headed home for Friday Halloween movie night!

LOVE spending time w our new family of five!!! :)

Thanks for stopping by,
Fannie, Matt, & the THREE Wilks kiddos

Day Five: A trip to Beihai

Wednesday in Nanning was our opportunity to visit Laila's orphanage and the place she was placed by her Mama to be found.

We took the speed train to her town, a beach town in Guangxi province known as Beihai.

We took a trip to Walmart to buy supplies for the orphanage.  We were also very happy to give them all the supplies you guys sent! The asst director said the kids LOVE the gummy vitamins. :)

We weren't allowed to go into the orphanage but the asst director walked us around the grounds and we were able to talk about how our girl was in the orphanage vs what she had been like since we got her. It was very insightful

And we were glad we had the opportunity to visit.

We also got a chance to say goodbye to one of her nannies. She was very nervous and unsure but posed for a picture.

Next we went to see where she was left to be found.  It was a beautiful place & we are so glad we have that history for her one day when she's older.

It was a long & tiring day!  We are so blessed to have this little one with us!! We were told she was the only child with thal in her orphanage so we were very glad God put me in just the right place to bring her home as our daughter where she will get all the medical care she needs.

Night night from Guangxi!!

Fannie, Matt, & Laila