Friday, November 29, 2013

Four months already??


I knew we were coming up on four months w Chengbin but I honestly didn't realize it was today until a friend mentioned her daughter's day on Facebook! It is amazing how I can't believe it's been four months with Chengbin but it also feels like he's been with us for much longer than that.

He's doing really well! His teacher is amazed at his English language progression.  He's even taken to correcting how Katie says certain words over the last week.  Apparently he is considering himself an expert! Lol!  

We had a fantastic transfusion two weeks ago, where his hemoglobin number stayed at a healthy level before the transfusion and accessing his port is becoming more normal to him on transfusion day saving us many extra hours at the hematologist office.  We were out by 2:45 last time which is our earliest yet!

Since he's already gone through quite a few firsts, I've decided to tell a few
Cute & not so cute stories about the little guy through pictures.

He LOVES his rain boots! He wears them to school on an un-rainy day a couple times a week!

He throws a fit about being forced down for a nap, but readily naps in the car, on the couch (often w a toy in his hand) or at disneyworld!

He takes his medicine like a boss!!  Even if he is in the middle of a world record level tantrum he will stop & take his medicine like a good boy! I am one grateful mama for this!!

He has a transfusion & fellow adoptee pal named Kate that I hope he will be friends with forever!

 At Disneyworld...
 During a haircut...
 Even at the waterpark...

He can throw a world class tantrum like you wouldn't believe over absolutely nothing, but he's the bravest boy in the world during all the difficult medical stuff. ;)

Growing up in the orphanage made him a little less coordinated than other 5 yr olds, and he often has the bumps & bruises to prove it.  The bump on his head was from jumping the wrong way on a jumper obstacle course which sent him head first into the ground!! He cried for two minutes & then begged to 'go back play'!! 

And lastly- he is a great little boy! He is sweet and loving! He is happy!! And we are happy he has had four months with us!!!

Oh yeah, and he's decided he likes that American name we were planning to call him... So now it's Chengbin, Chengbin Ben, or Ben. :)

Thanks for stopping by,
Fannie, Matt, Katie, & Chengbin "Ben"

Exjade finally arrived!!!

Okay, confession: I procrastinated getting Chengbin's exjade prescription filled! I didn't want to start it until all his lab work was in with solid baselines so we'd know where we were starting from. Exjade is serious medicine!! The possible side effects are not to be taken lightly and a host of lab work has to be completely monthly to monitor liver & kidney function when taking it..

I had no idea how difficult it was going to be to get it though...

When you get a prescription for exjade you actually have to register with the manufacturer, Novartis, before you can be approved to receive the medication.  Then you have to send the prescription to a specialty pharmacy that is authorized to fill a prescription of this limited distribution drug.  Then you have to wait for Novartis to approve the pharmacy to distribute to you and wait for the pharmacy to get final insurance approval!  It took 3 weeks from start to the meds arriving on our doorstep!!! Good thing this med is only the difference between life & death... Oh wait...

So exjade arrived and while I had procrastinated its acquisition, I had fully researched the methods that are tried and true for getting a picky toddler to take his meds. :)

Chengbin loved orange juice in China, and since I knew it was great to take exjade in, I had banished OJ from our house so that he wouldn't be burnt out on it before the exjade arrived!

So you have to dissolve the exjade tablets completely and ensure that every bit of it gets ingested.

I'd been warned to mix it in as little an amount as I could so that we got it all down quickly.  After all, the larger the amount to drink, the more likely we are to fight about finishing the whole thing.  So yes, I used a shot glass.  (Don't judge me)

Chengbin did great with it! No complaints!! It took three full shots of OJ to get all the exjade residue into his tummy.  

Since the first day we've experimented.

Milk & OJ work for him.  We also piled up some Jake & the Neverland Pirates yogurt to mix it in! ;)

This medicine is unbelievably important.  His liver scan showed he has 43mg I iron per gram of tissue.  This is scary high!!! Every transfusion causes a huge amount of iron to go into his little body.  Over time it has built up in his body and filled his liver.  Our goal right now is to reduce the number of transfusions he receives and do intensive chelation therapy to remove the iron overload he currently has.  Successful chelation is the difference between a long and healthy life or an early death from organ failure for a thalassemia patient.  Thankfully he takes it like a champ and we are so grateful he does!!

I am so glad our sweet boy is home in a family that loves him and will fight for him to grow up happy and healthy!! We are so blessed to have excellent doctors, medications, & insurance.  :)

Can't wait to see improvement over the next year! We'll keep you updated on out progress!

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

All About Thalassemia

I started this post more than a month ago, but life got busy as we determined Chengbin needed a port & also was scheduled for his annual ferriscan in Atlanta.  So even though it's late, hope it is helpful to anyone trying to learn more about thalassemia.

For Chengbin's third transfusion since arriving in the US, I thought it was important to show you all what a typical transfusion day is like and go over our treatment plan for him.  I was looking at an agency's individual list the other day and was shocked to find four children awaiting forever families that have thalassemia!!  These are amazing, wonderful kids who may not have a "cure" but DO have a VERY manageable medical condition!!  So here it goes..

Chengbin has beta thalassemia major.  It is the most severe form of thalassemia, requiring blood transfusions every 2-4 weeks in order to develop normally.  He also needs chelation therapy, which simply stated, is medication that takes the excessive amount of iron in his body back out.  He gets the excessive amount of iron through his blood transfusions.  Chengbin's condition is genetic.  Both of his parents were carriers of a gene defect, neither may have even known they had... The genetic defect causes his body to produce defective red blood cells.  While the average person's red blood cells are good 120-160 days, his are good less than a week. 

If left alone, with no blood transfusions, Chengbin would be severely anemic all the time and his bone marrow would be in overdrive simply trying to produce enough red blood cells to keep him circulating oxygen and alive.  The bone marrow would expand causing bone deformities.  It would work so hard to produce the red blood cells that he would stop growing as well.  Ultimately he would die from organ failure resulting from years of severe anemia.  

The goal of transfusions is to suppress his bone marrow from making red blood cells.  We transfuse healthy red blood cells into him so that the bone marrow doesn't need to go into overdrive trying to make them.  It can focus on helping his bones grow healthy and do all the other wonderful things it does!  It also helps keep him from going into a severely anemic state. 

So what is life like with him?
Normal.  He is a healthy, smart, and active little boy.  He goes to school.  He plays outside and rides his bike.  Aside from being a little more tired and fussy the couple days leading up to transfusion, he is like any other kid.

What is his treatment plan?
Every thal patient is different in how long they go between transfusions.  Right now Chengbin goes 3 weeks between them.  We may begin to look into finding direct blood donors which would give us the freshest, healthiest red blood cells.  This could potentially give us an additional week between transfusions.  He also takes an oral medication daily.  The medication is part of our chelation regimen.

We check his height & weight to ensure he gets the proper amount of blood.

In China he spent 3 days hospitalized in case of blood reactions.  Here his blood is typed and screened so that he receives an exact match.  He has had no blood reactions since coming home & the transfusion is an outpatient procedure.

He is seen by the hematologist prior to transfusion.  For non-port patients, medicine can be applied to numb the areas where the nurses will try to start a line for bloodwork & transfusion.



What is transfusion day like?
We go into the outpatient transfusion center at 8:30am.  Because we live over 45 minutes away, we first draw blood to check his hemoglobin and complete blood typing through the blood bank.  Chengbin has a LOT of scarring from years of transfusions.  He has them in his hands, arms, feet.  He even has a permanent vein scar on his forehead from when he was very young.  Honestly, the least number of sticks we've had to get a line has been 4.  During our 3rd transfusion we had extreme difficulty and did not get the blood.  We went back today and got him on the 3rd stick.  We will probably schedule surgery to get a port.  This will provide easier access to his vein for transfusions & blood work, allowing better quality of life for him.  It will also give his veins some time to heal.  We usually start the blood by noon and the actual transfusion takes 3-4 hours.

Could I handle a child with beta thalassemia major?
Most people find thalassemia major to be very manageable.  However, it is important to note that this is a lifelong disorder.  The only cure is bone marrow transplant (which is considered VERY risky).  Life expectancy is considered normal as long as the treatment plan is followed.  There are no statistics that are accurate to show life expectancy, because drug therapies have changed so much in a generation.  A thal major child will always need blood transfusions.  We find his condition to be very manageable.  We have a day at the transfusion bay every 3 weeks.  He also had to have baseline ear & eyes checks to begin medication.  He will have a yearly ferriscan at the Thalassemia Clinic in Atlanta to check the levels of iron buildup in his organs so that we can ensure chelation therapy is on track.  He also receives an annual check up from an endocrinologist to ensure his growth is on track.

Our family is very happy to have chosen a child with thal.  It works for us.  He is wonderful and we are already looking to bring home another child with thalassemia.  The treatment he receives here in America makes all the difference for his future.  We wanted to find a child that could benefit from the level of insurance we have.  Without proper treatment, he would have died in China, but not here!  What an amazing gift!  To go from death sentence to a long, healthy life??? My hope is that by sharing this someone else will be willing to take the leap of faith and bring a thalassemia child home.  If you have questions or need some help finding a thal child to be matched with, please contact me.  I am always happy to help an orphan find a family! :)

Thanks for stopping by,

Sunday, November 10, 2013

Big News in the Wilks House!

Last Sunday, Orphan Sunday, our family made a big decision...  We are adopting again!!

We are so blessed to have two beautiful children and with this nice, big house we have found that there's plenty of room in our house and our hearts for another child.  There are just SO many kids that are in need of their forever family.  And yes, we will be going back to China!

Our precious girl has adapted wonderfully to being a big sister.  She has fully embraced her new role and loves her little brother so much.  She tells me that she has always dreamed of having a large family with lots of kids, so she is THRILLED!!

Our cute little man knows enough English to understand what is going on.  He is excited too.  In fact, he's been asking us to make a little girl in pictures his "mei mei" since very early after coming home.  When we ask if he'd rather have a big sister, little sister, or baby brother he changes his answer each time!!  Bottom line is he's open to another sibling coming home from China & we are thrilled he can understand what is going on & have a sibling to share his Chinese heritage with.

So our road to China has begun again!  Homestudy update is the first step.  We have completed our background check paperwork & paid our initial fees.  We aren't sure yet if we will re-use our dossier currently in China or redo our entire dossier package which would broaden the children available to us...  Luckily, we don't have to decide yet, so we are prayerfully moving forward and know that God will make it clear which child we should bring home in his time.

So, I know what many of you are thinking... WHEN will this happen?  When will Wilks Kid #3 make his/her debut and turn us into a family of five? We hope to have similar timeframes to our last adoption and bring our new kiddo home sometime during Summer 2014. 

We had NO idea when we started our homestudy last year that we would so quickly be going back for another child.  The need is just SO great!!  As we walked into our new house after signing the papers, the first thing I felt on my heart was that we had a lot of extra room.  We have not forgotten the little faces we met in Chengbin's orphanage.  We have not forgotten the walking hugs of precious children who so clearly longed for a family of their own.  Every child deserves to grow up in a family.  No child should grow up in an orphanage or foster care.  Even the best foster home out there is no replacement for a forever family.  We are so blessed to be able to bring one more child home to their forever!!!

So the wheels are turning once again!  Hoping things go quickly and we have amazing updates very soon!!! :)

Thanks for stopping by!
Fannie, Matt, Kate, & Chengbin

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Saturday, November 2, 2013

2 months? Make that 3!!!!

Boy does time fly!!!  One minute you are writing a blog post about 2 months with the family and you blink and its already 3 months and that 2 month post never got out for all to read!! Yep, that's life right now!  I feel like its finally starting to slow a bit as have gotten a lot of our medical appointments completed and we are now in a "maintenance" phase of thalassemia treatment for a bit.  We have a few updates to tell ya'll about, but first I'd like to take a look back...  Why?  Because it helps me as a mom, still in the middle of transition & a few difficulties, to remember just how far our sweet boy has come. :)

On July 29th a very cute, small, & slightly hesitant boy walked out of the curtain in the Civil Affairs office and into our life!!  He was beautiful & showed his mischievous side right away as he joked about whether he was going to come over to us or not.

We are so lucky that God led us to this little guy! Our son is perfect for us! Truly an amazing child with a heart full of love. It hasn't all been a fairy tale or easy because this is adoption.  Adoption is choosing to love a child under less than the best circumstances.  After all, the best circumstance would have been for his birth mother to keep loving & getting medical treatment for him.  The best circumstance wouldn't involve us at all.  But our little son never ceases to amaze me with his capacity to love and trust in spite of all he's been through.

In three months he has experienced so much!  Here are a few highlights of the Chengbin firsts!

First trip to the beach!  First time to feel sand under his feet and the rush of a wave crashing in!  He had no sensory issues and loved every second of it!!  Since this, beach days have become a regular part of life with his new family. :)

First time to have a transfusion & go home all in the same day!  This is big- in China he had to stay in the hospital all alone for 3 days before the orphanage van came to pick him back up.  He had very bad blood reactions.  Since he's been home- NO blood reactions!  :)

First trip to Disneyworld and first ride on Dumbo!! :)  He was overwhelmed at our hotel, but did amazing with all the sensory overload of Disney!

First time to swim in a pool all by himself!  He's gotten so good and so brave that I knew I could trust him!! :)

First ride on a train!!  (A little kid train pulled by a lawnmower but STILL)

Yep, this little guy is having fun!!  Can you tell??  We still have our moments... The times where he breaks down into a pool of tears for seemingly no reason whatsoever.  He still has his moments of obstinance.  All in all, those times are getting smaller & smaller.  We expect them.  He's a child who has gone through a lot of changes in his short life and he's just struggling to keep up.  We joke that we have happy Chengbin & "Mr. Slumpie" :)

3 months of forever!  I often wonder what he is thinking about all of this.  His English is pretty amazing already, but its basic.  There's no ability for deep conversation yet! ;)  Maybe by 6 months??

November is National Adoption Month & tomorrow is Orphan Sunday.  I would be remiss if I did not plead with anyone reading this who has ever considered adoption to take the leap of faith and DO it!!  The faces we left behind in that orphanage haunt me and bring sadness to this mama every single day.  The orphans of our world are not waiting for a perfect family, a perfect bedroom, a perfect house, or anything like that!  They want love. They want a family.  They want someone to kiss them goodnight.  To hug them when they are hurting.  They need someone to dig deep, take a risk, and change their life.  Yes adoption is expensive, but there are so many ways to raise money and bring home a child in need of a family.  If you don't feel led to adopt, I encourage you to find a way to help!  Ask me about families who are currently fundraising to bring home a precious one & donate to them.  Ask me about charities who are directly affecting the lives of orphans & sponsor a child or donate to them.  Please find something you can do to help "the least of these"!!!  The need is great!!!  These children matter!!!!  Imagine what God could do if the estimated 143 million orphans in our world knew the love of a family and the love of their savior!!!!

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress."  James 1:27

Friday, November 1, 2013

His First Halloween!

Halloween ended up being the first American holiday and to say he was excited for trick or treating is an understatement!  Chengbin has been watching Mickey Mouse Clubhouse trick or treat, Yo Gabba Gabba "fall", and Great Pumpkin Charlie Brown for the last few weeks leading up to it!  He understood that we were gonna get all dressed up & go get candy.

He LOVED his Jake costume!!  He received the scope as a present from a special friend only a couple days earlier and it was the perfect accessory!! :) 

My sweet girl decided to go with Jasmine this year! :)  I found myself wondering if this will be the last year she wants to be a princess??? I hope not!!
Isn't he just the cutest Jake and the Neverland Pirates ever???

I just loved how I could see the "Made in China" and my sweet boy!

It was a great first Halloween for Chengbin & a great Halloween for Katie too!  It was also amazing to be in our own home in our neighborhood!  I'm so excited about this new chapter in our life!!  Our son is no longer an orphan, he is a son, a brother, and an American kid!! :)

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