Showing posts with label Thalassemia. Show all posts
Showing posts with label Thalassemia. Show all posts

Saturday, October 29, 2016

Progress, Provision, & Care Packages

Progress!!!! 3 weeks ago we found out that there was an issue... when China processed our letter of intent to adopt Little Miss, they logged her approval as a dossier reuse instead of putting the approval with the dossier we'd just sent in Sept.  Our agency tried and tried to get them to accept the paperwork that was there for it, but ultimately China wanted a second application letter from us.  So we printed it, signed it, notarized it, authenticated it at the county, state, and Chinese consulate, & finally our agency sent it to China.  We knew we would be held up until they received it but hoped things would move fast once they got it.  So far, so good!! They got it on Thursday and Friday they changed our status to 'matched' for our wingman.  What this means is that we will hopefully get our official approval to adopt the kids in the next week or so!!!!!

Provision!!! Touch the Sky has been working on an amazing fundraiser for the kiddos orphanage fees.  So far it has raised over $1000 & if the full blocks fill it will raise almost one full orphanage donation!!! Yesterday we received our first approval letter for a grant!  Forever Families has generously gave us a $1000 grant!!!  We still have a ways to go in being fully funded but we know that it is all in God's timing and in accordance with his plan.



Care packages!!!  We sent a care package to Little Miss with some friends from Gladney adoption agency.  They are the agency I traveled with in April when I met her.  She officially knows we are coming for her!!! :)


I love that Rocky sat down with her and explained each of the pictures to her!!!  We included pictures of all of us, of our wingman, our house, our playground, our dogs, our kitties...


He gave her the special necklace we sent so she'll have her family's picture wherever she goes!



And he passed her the kitty cat that Laila picked out for her just days before!!  She had her kitty and that kitty sleep together for a few nights before she sent it on to China. ;)

We have a care package ready to send to the Wingman too!  His orphanage does not accept outside care packages, but we are thankful that two agencies are doing advocacy camps with his orphanage making it possible for him to receive one and know that we are coming for him!!! 

It's getting close to travel!!!  We are hoping and praying the next few steps are completed quickly and we can travel to China at the end of November or first week of December.  We are SO excited to get these babies home where they belong!!!  Can't wait for them to become Wilks kids!!!


Wednesday, October 26, 2016

Our littlest girl.. Part one

The story of our sweet, little girl began many months ahead of announcing her adoption to ya'll...

Back in April I visited two orphanages in China where I had the opportunity to meet many children who are in need of families.  I asked ahead of the trip to meet the children with thalassemia in particular, since as the mama of two with this medical need, I've seen first-hand the difference that care in the US does for these precious kiddos.  Before leaving for China, I'd already seen the picture of our wingman and read his file.  I really thought he was supposed to be ours but I also had been given the unique opportunity to go on an advocacy trip to China.  I knew how important this trip was, but I also felt pulled to that sweet little guy.  So I prayed about it and God gave me complete peace that I needed to go on the trip to China and trust that little wingman's future to him.

As we walked into the doors of that first orphanage, I expected to meet a few kids with thalassemia.  Once we arrived I found out I would get to meet nearly all the kids with thalassemia that day.  When we walked into the library where we'd be meeting kids, I walked in and saw the cutest little girl sitting quietly waiting for us.  As soon as I saw her I looked over at the agency rep and asked him if she was one of "my" thal kids.  He asked someone on the orphanage staff and she said yes.  A few minutes later, Gongzhan and I were going through the list of children and giving them English names for advocacy.  When we got to her, he told me to choose a name that started with an "L" and I told him "Lila"...







That day in the orphanage I was privileged to get to know many amazing children.  The kids with thalassemia have my heart and I tried to spend time with each one of them individually so that I could better "know" them to advocate back in the states.  When it was time for lunch, we headed to a special room and sweet little Lila sat next to me and another precious little girl, Helen, sat on the other side.  These two sweet girls were absolutely precious.  I just laughed going back and forth between them, watching Helen mix everything into her bowl while Lila went to town on her sweet and sour pork!  By the time lunch ended, Lila had eaten all of her sweet and sour pork, all of my sweet and sour pork, and a little more of another friend's sweet and sour sauce! :)  She had captured my heart a little bit were her beautiful little face and sweet smile.



We spent some time coloring and I kept thinking what a great sister she would make for Laila. They were the same age with the same medical need.  How cool would it be for them to grow up together and always have each other?? But then reality set in as quickly as the thoughts began... I already felt pretty sure I'd seen our next child.  HJ needed a family.  Chengbin had been praying for a brother.  We were going for a boy.  This girl couldn't be ours.  We would be going for a boy and that was that.  I started giving myself an internal pep talk about it.  Then I heard more about this orphanage and how few children's files get prepared compared to how many children live there.  The odds of any child getting their file prepared for adoption was slim.  Even if the orphanage did prepare it, the odds of it getting to a specific agency for us to adopt her were also slim to none.  Knowing this helped me push any thoughts of bringing home this little girl far away.  I pushed it completely out of my head.  No worrying, no wondering, nothing.  The facts didn't lie, this girl was not a part of our plans.  The truth is I met so many amazing kids on the trip.  All of them need families, all of them deserve more.  When we got home, I actually took nearly a month trying to get my thoughts back together after everything I'd seen and experienced in China.  That trip broke my heart into a thousand pieces and I grieved that I couldn't bring home a few of the special ones that I'd met there.  I'd met a special little guy in the next orphanage that I knew we would be able to bring home...

Once I got home, we did decide to begin an adoption and we did decide that we would be bringing home that sweet boy I'd felt was ours even before this trip.  Unexpectedly, even to me though, was that I felt like he wasn't all...  I felt like God was saying two... And I just kind of assumed that two would be the sweet little boy I'd met in the second orphanage during that trip.  The little one who had a prepared file.  I continued to advocate for that little guy and it began getting harder and harder to advocate because I wanted him to be ours.  One day another family asked about him and I didn't even want to respond.  I stopped what I was doing and prayed.  I prayed for God to help me push my thoughts and feelings out of this.  I asked him to help me to trust in him and his plans.  I asked him to take away my own thoughts and desires and replace them with his, because what I wanted most was to trust in him, his timing, and his plans rather than trying to force mine.

That night, he answered me.  It was loud and it was clear and it was shocking.

That night, my agency sent me Lila's file.  Her file had been prepared, it had gone onto the shared list, and of all the agencies in the world that could have pulled that file, my agency had pulled it.  And they had sent it directly to me.  I opened the file and looked at her picture. 

"No way I just got her file" I kept saying to myself.  "No way you just sent me HER file God!!"  "Are you serious God??!! HER photo? HER file?? Did you seriously just do this????"  All my thoughts of the plans I had wanted to pursue were gone.  Peace flooded me.  God was not just answering my prayer a little bit, but he was filling me with faith.  He was in charge, not me.  He can make anything happen.  Why was I considering forcing my will when he could so clearly do anything and might have so much bigger and better plans than me??!!!  I pulled up my facebook and responded to the family who'd inquired about that sweet little boy earlier in the day.  "God's got this," I kept telling myself.  Then I pulled her file up again and read her story and my heart broken into a billion pieces.  This was our daughter.  This was what God meant by two.  This was the reason he had sent me to China; so that when our daughter's file was sent to us, I would know she was ours..

To Be Continued... ;)






Wednesday, April 13, 2016

Shanghai Advocacy Camp Day One!

What a day the first day of our trip to Shanghai was!!

I honestly didn't know what to expect.  All we knew was we'd be spending the day getting to know around ten children and of these, two have thalassemia and have been listed with Gladney.  I'd asked for the opportunity to meet all the children with thalassemia since I have such a heart for these kids and desire to see them find families.  Of course, no promises could be made on this and I had no idea if I'd get to meet only those two or the others....

I was in shock when I was handed the list.  He told me they had agreed to send ALL the kids with thalassemia over to spend the day with us.  I was so excited I hugged Mr. Wu and told him I promised I would find a family for all of them!!! (Sure it was dramatic, but I was crazy excited and I did mean it!  These are amazing kids!!)  We met and spent the day with over 16 kids on this day.


 This little girl caught my eye the second we walked in the room.  She was sitting in a chair so quietly and patiently.  I immediately thought she was one of "my" thal babies and sure enough she was!!

And then there were more thal sweeties!!!  This little boy in blue is so funny and played for hours.  The little girl in red was quiet at first, but came out of her shell quickly.  She excitedly picked out a hairbow with the other girls and wore it around proudly.  She also was very excited to get a set of Lego Friends to play with.  Once she set it up, she pulled it apart so that it could go into the box.  I noticed it became her little treasure, she was determined that it was hers and she'd be taking it with her.  When her bow kept falling out, into the "treasure box" it went so she could make sure it went with her too!

 
This awesome girl is currently on Gladney's Designated list and her name is Hope.  She is such a special girl.  She loved drawing pictures and singing with our little Frozen songs music player.  She also pulled out some crazy good dance moves and followed every bit of the moves in some dances we did!
This girl... She has thalassemia and is just SO AWESOME!!!  She's 8 years old and we are hoping she will have paperwork ready to go soon so that she can be adopted.  I adored her!!  She was just so smart and funny.  She always had a smile.

I actually recognized this boy from prior advocacy.  This is a dinosaur drawing that he did with us and then he showed it off to everyone.  He and I played balloon toss (and kick) for a while!!  He's just a typical boy!!

These two boys had so much fun.  The boy in the brown is Hunter and he is on Gladney's Designated List.  He is eligible for adoption and waiting for a family!  The boy on the right has been advocated for many years as "Emery".  It seems he may have a family ready to commit to him which is so awesome!  He also has thalassemia!!

 I enjoyed EVERY SECOND of this time!!  This is when I was doing art with the girls!!  The girl on the right is also on Gladney's designated list now listed as Haley.  She seemed very smart and had so much fun with us.

And this boy is Jack!  Is it okay to say he's my favorite??? He speaks fluent English!!!  And because I could understand him, I could also understand just how funny he is!!  At one point he was playing with another advocate and pretended he was going to drop water into his nose.  Then he told her "I'm just kidding!  I'm not an elephant!!"  He has low vision but he can see well enough to navigate the world on his own and he can see when he puts things up close to him in just the right spot.  He was so fun and I am determined to find him a family!!  He has a video on Gladney's facebook page.  Oh, such an awesome boy!!

There were so many more, but I've learned that readers will only read so much!!  So I'll share more soon about the other kids we met.

This day was a dream coming to life for me.  God has placed such a burden on my heart for the orphan.  Jesus spent his ministry loving on the last and the least.  This is his heart guys!!  I hear so many people say they've considered adopting.  Just go for it!!!  I know it can seem overwhelming but it's not.  You just take one step at a time until one day your child comes home for you to show the love of a family.  These kids need families!!  No orphanage, no matter how nice or loving, can replace the most basic need of these children.  They NEED families!!!

So much more to share soon.  If you are a Christian can I just encourage you to pick one of the kids I meet over this week and start praying for them?  Every child should have someone interceding for them daily.  We all pray for our kids, but these kids have no one praying for them and we know that prayer does make a difference.

Thanks for following along on the trip!  More stories from China soon!!! :)



Friday, March 4, 2016

In 5 weeks...


I'll be packing my suitcase to head to CHINA!!!!!!

And I'm crazy excited!!!!

So many amazing children to meet in Shanghai & Changsha!!!  And you guys are going to be bombarded with pictures and videos of all the sweet children who wait!! ;)

It doesn't feel real quite yet, but I've sent my passport to NY for a Chinese visa, the flights are being booked today, and it's really, really happening even if it doesn't seem real yet!!

I've prayed for and dreamed of the opportunity to go meet these kids and help them find their families.  So thankful that God has provided me this opportunity to go love on these kids!!!

Oh, I'm SO excited!!!!!

In five weeks... China Baby!!!

Guess I should get out my camera & start sharpening my skills again. :)

Tuesday, September 22, 2015

365 Days with Laila

Today is a big day!  Today is the one year anniversary of Laila's "gotcha" day in Nanning, China.  This time last year our sweet girl was having one of the worst days of her life.  She was torn from everything she'd ever known and she was NOT happy about it.  She refused to go to me (she's a stubborn girl for sure) and eventually her Nanny just had to walk away and I was told to pick her up.  She SCREAMED.  A LOT.  Our sweet little girl was downright terrified.  And who could blame her?  Adoption is the best response we can give to little lives that have been filled with far too much loss, but at the onset, adoption is one more difficult thing for a child to go through.
 
Thankfully, "Gotcha" Day is not just the end of one story, but it is where the story of redemption begins.  I'll tell ya honestly guys, redemption isn't an easy story.  It is sad, sometimes heartbreaking.  There are tears from the scared child and from the heartbroken new parents as they watch their new child process another loss.  It is hard.  Sometimes really hard. There's rejection.  There's trauma.  There's far too much to explain in a simple blog post.
 
During the days after Gotcha we were in survival mode.  She would hardly sleep.  She would cry for her nanny at the top of her lungs, pointing to the door and to the window and yelling "Agea"!!!!  She had sores ALL OVER her arms and legs.  Her belly was distended and hard.  I remember undressing her, putting her in the bathtub, and praying to God that she would be okay.  She was sick, she was broken-hearted, and we were all in survival mode.  Just get through this bath.  Just get through this night.  Just get through this day...

 
Thankfully, by God's grace with each passing day a little more healing took place.  Her emotional scars began to heal.  Her physical scars began to heal.  Our family came together and settled in for the long haul.  Her attachment was harder than Chengbin's had been.  She just needed more time.  In China she didn't like Mommy.  Once home she wasn't so sure about Daddy.  Thankfully her "Half the Sky" book that the orphanage gave us had documented every bit of her life that she'd spent in the orphanage and provided us tremendous insight.
 
This sweet girl barely crawled at 16 months old.  She didn't walk until she was 22 months old.  Every 6 months in the orphanage, her one-on-one caregiver changed and she grieved that loss.  No wonder her attachment was so difficult- she had spent her life up until this point extremely sick, extremely tired, and with caregivers that kept changing right as she would build her attachment.

 
 So not surprisingly, it was more than 6 months before she really began to build attachment to all members of our family.  After the 6th or 7th month she finally began to see that this just might be different.  That we just might be her forever.

 
We have been so blessed.  God really has given us a front row seat to witness a miracle.  That's what she is- a miracle.

 
Sweet Laila Jean is a happy, healthy four year old! 
She's funny and so, so sassy!! (But don't tell her cause she'll insist that she is NOT SASSY! ssshhhhh) 
 She loves to play with "Sissy and Chengbin".
She constantly asks "I sleep with Mommy at Disneyworld??"
 
 
We just love this little firecracker of a girl so much!!!! 
 
 
We can't wait to see the plans God has for this girl!!!  It seemed only fitting that she wear the special shirt that so many friends and strangers bought to help bring her home on this special day.  We let her balloons go and said a prayer that somewhere her birth Mama & Baba will receive a peace in their hearts that only God can give them.

 
365 days with Laila.
Thank you ALL for supporting us along the way.  For praying for us.  For helping us bring her home.  For loving this little girl from afar and then welcoming her into her new family, new church, new school, and new life!
 
Laila Jean, you have been one of the most amazing blessings of our life.  We are so lucky to be your family.  I am so lucky to be your Mommy.  Always remember, God really does have more in store for you than you can ask or imagine.  And we will be sitting on the front row to watch it all unfold!!

Friday, January 23, 2015

Laila's First Four Months

 
Yesterday we celebrated four months of forever with Laila.  On 9/22 this little baby girl toddled into the room at the civil affairs office in Nanning and proceeded to show us how unwilling she was to be friends!!  She grieved SO hard in those first few weeks in China.  And while I knew that it would get better, I'd be lying if I didn't say it was still difficult.  Very difficult.
 
 
This little daughter of ours was so much like a one year old baby in spite of her chronological age of 3 1/2 years old.  She didn't feed herself.  She didn't dress herself.  She could barely walk.  She certainly couldn't run or jump. She didn't talk. She'd spent her whole life so far struggling to survive.  We knew we had a long road ahead of us with this little girl. 

 
Once we got home, she started feeling more secure.  She started trying to feed herself bites of her food.  She started sitting in her own seat at the table rather than on Mommy or Daddy's laps as she was spoon fed part of our dinner.  And she made great physical progress, learning to walk steadily and even run as she chased after that new big brother and big sister!!
 



 
 
And now here we are with four whole months of forever in the books...
 
She is now talking!!  Yes, talking!!!  And not just one word here or there, but actual short sentences.
 
"Let me see."  "Give me that."  "Mommy I hungry."  "I want water."  "Baby needs go sleepy."  and my favorite one of all..
 "I wan go go home."
 
She knows where her home is and cheers every single day when we pull back into the driveway after daycare!

She can undress herself & get dressed again all by herself!!  (though admittedly, buttons are still a wee bit tricky;)
 
She's also jumping!  And climbing!  She can climb up the rock wall of the playground outside all by herself!! 
 
She's almost completely potty trained!  We've had many days with no accidents all day long! :)
 
She's getting all the medical care she needs.  Her transfusions are giving her energy she has never had before!!  And all that great blood & good nutrition has caused another amazing thing...
She's growing!!  Over 2 inches in her first 3 months home!!
 

This adorable girl is very quickly progressing in so many ways!!

I'll be honest though... It's been tough.  Parenting a toddler is tricky already, but parenting a toddler with food issues, security issues, and developmental delays is even harder and more stressful than it was for a bio kid.  There are times when she screams and screams and screams and screams in ways that are beyond normal toddler tantrums.

Daycare transition was extremely difficult and so many times I felt like a horrible mother, leaving her there when I could hear her screams outside of the building.  I praise God everyday that she's gained the confidence and security to know now that "Mama always comes back."

And I still feel a little heartbroken when I see a "real" 3-4 year old walking around talking to their mama in Target and look at my sweet girl who has SO MUCH catching up to do.

But she IS making huge strides!!  Strides that are celebrated by every member of our family!!
Adoption is a beautiful thing to live.  We get to witness big & small miracles every day with this girl.  We get to see her learn to trust, learn to share, learn to listen to rules, learn to calm herself down, learn to accept love from siblings, and witness "first" after "first".

She is a little miracle and we love her so much!!

Once again, thank you to so many people who helped get Laila home!!!  We love you all and are forever grateful that you said "yes" to helping this sweet girl come home. :)

Thanks for stopping by,
Fannie, Matt, Kate, Chengbin, & Miss Laila



Saturday, December 27, 2014

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