Thalassemia

I have seen the face of God and I did not find it underneath a steeple, or in the middle of a worship fest, or in the faces of church leaders.

 No, I have seen the face of God in the eyes of the orphans who rise each morning, completely alone in the world and raise their hands to the only Father they have ever known.

 I have felt the ache of my Savior’s heart as I have watched children lose their chance for a family. I have seen the devastation that we have left in our own paths of selfishness and I have knelt before my Savior in humbled repentance. He has opened my eyes.

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

We cannot pretend any longer, Friends. Our eyes are open. We are responsible to act, to do, to go. We are responsible.

Special Need of the Week!

Thalassemia

I’m going to put in a shameless plug here. My son has thalassemia b major. These kids do not have much time to live in China. They do not have the ability to get the medical treatment that they need there.  

Please, prayerfully consider these children. Feel free to contact me for more information

on thalassemia.

www.choosingthalassemia.blogspot.com is an excellent resource

Special Needs Interview

Completed by Rebecca

• What country did you adopt from?

  CHINA

• What was the age of your child at the time of the adoption?

 1. 9 1/2 MONTHS AND 2. 4 1/2 YEARS

• What made you consider this special need?

 I FILLED OUT A SPECIAL NEEDS MEDICAL CHECKLIST AFTER I HAD CONSULTED WITH MY PEDIATRICIAN REGARDING ALL OF THE LISTED SPECIAL NEEDS.  MY PEDIATRICIAN TOLD ME THAT THALASSEMIA WAS SIMPLY A FORM OF ANEMIA AND NOT A SEVERE SPECIAL NEED.  WHEN I RECEIVED MY FIRST DAUGHTER'S REFERRAL, I BEGAN RESEARCHING MORE AND DISCOVERED THAT THALASSEMIA CAN BE A SEVERE SPECIAL NEED.  MY FIRST DAUGHTER'S MEDICAL FILES WERE QUITE CONFUSING, BUT I WAS FAIRLY CERTAIN THAT HER TYPE OF THALASSEMIA WAS MODERATE TO SEVERE.  IT TURNED OUT THAT SHE HAS BETA THALASSEMIA MAJOR.  MY OLDER DAUGHTER WAS ADOPTED A YEAR AND A HALF LATER AND I WAS VERY WELL AWARE OF HER SPECIAL NEED, ALSO BETA THALASSEMIA MAJOR.

• What does daily life look like for you now? 

DAILY LIFE CONSISTS OF AN ORAL MEDICATION MIXED IN A LIQUID AND BLOOD TRANSFUSIONS (X 2 GIRLS) EVERY 3 WEEKS.

• How has it impacted your life?

 MY DAUGHTERS HAVE BEEN A COMPLETE BLESSING IN MY LIFE AND THEIR SPECIAL NEED IS VERY MANAGEABLE.  WE TAKE A HALF DAY TO GO TO THE HOSPITAL EVERY THREE WEEKS FOR A TRANSFUSION AT A LOCAL DAY HOSPITAL.  THE HEMATOLOGIST VISITS US AT THE HOSPITAL.  I USUALLY TAKE MY WORK WITH ME, BUT ALSO TRY TO SPEND SOME QUALITY TIME WITH THE GIRLS.  THE GIRLS MISS SCHOOL ON TRANSFUSIONS DAYS.  DUE TO THE EXCESS IRON FROM THE TRANSFUSED BLOOD, PATIENTS HAVE TO HAVE A CHELATION THERAPY.  MY GIRLS TAKE EXJADE, AN ORAL CHELATION DRUG THAT IS MIXED IN JUICE OR WATER EACH DAY.  TRANSFUSION DEPENDENT THALASSEMIA ALSO REQUIRES A SLIGHT MODIFICATION OF THE DIET (I DON'T FEED MY GIRLS RED MEATS OR IRON FORTIFIED FOODS) AND THEY WILL NEVER PARTICIPATE IN ANY TYPE OF CONTACT SPORTS.   THEY ARE WONDERFUL GIRLS, FULL OF LIFE AND SPUNK.  THEY HAVE TAUGHT ME A LOT ABOUT LIFE AND I AM SO THANKFUL TO HAVE THEM BOTH AS MY DAUGHTERS.

• Are there variations of the condition and what are you dealing with in your child?

 THERE ARE MANY VARIATIONS OF THALASSEMIA TO INCLUDE TRAIT (CARRIER), INTERMEDIA, AND MAJOR FORMS OF THE ALPHA OR BETA CHAINS.  MY GIRLS BOTH HAVE BETA THALASSEMIA MAJOR AKA COOLEY'S ANEMIA AND AKA MEDITERRANEAN ANEMIA.

• How does insurance coverage work for this condition and the adoption? 

MY GIRLS ARE ON TRICARE (RETIRED COVERAGE) VIA THEIR DAD.  WE DID NOT INCUR ANY COSTS WHEN HE WAS ACTIVE DUTY FOR THE TRANSFUSIONS, BUT NOW PAY $25 PER TRANSFUSION.  WE ALSO PAY A MONTHLY CO-PAY OF $12 FOR THE MEDICATION, EXJADE.   OBVIOUSLY, THESE COSTS DIFFER DEPENDING ON INSURANCE COVERAGE.

• What expenses should a family be aware of upfront? 

TRANSFUSIONS CAN BE COSTLY, DEPENDING ON INSURANCE COVERAGE.  SOMONE CONSIDERING A CHILD WITH TRANSFUSION DEPENDENT THALASSEMIA SHOULD RESEARCH THEIR INSURANCE COSTS TO INCLUDE CO-PAYS, DEDUCTIBLES, AND MEDICATION COSTS.  SOME STATES HAVE ADDITIONAL PROGRAMS TO SUPPLEMENT HEALTH INSURANCE AND MEDICATION COSTS.

• What state are you in and does it offer additional coverage to this particular special need? 

FLORIDA - I DO NOT KNOW IF FLORIDA OFFERS ANY OTHER COVERAGE.

• What else would you like others to know about this condition? 

CHILDREN WITH THIS CONDITION ARE PERFECTLY HEALTHY MOST OF THE TIME.  MY GIRLS CAN BECOME A LITTLE LESS ENERGETIC, IRRITABLE, OR TIRED WHEN IT IS CLOSE TO TRANSFUSION TIME.  THEY DO NOT GET ILL ANY MORE THAN OTHER CHILDREN.  IN FACT, ONE OF MY DAUGHTERS WITH THALASSEMIA IS ALMOST NEVER SICK.  THE INFORMATION ON THE INTERNET REGARDING THALASSEMIA IS QUITE OUTDATED AND TERRIFYING FOR THE PROSPECTIVE PARENT.  THERE ARE MANY REPUTABLE RESOURCES FOR THE PROSPECTIVE PARENT TO INCLUDE AN ADOPTING THALASSEMIA YAHOO GROUP, COOLEY'S ANEMIA FOUNDATION, AND OTHER SUPPORT GROUPS.  I WOULD RECOMMEND ADOPTING ONE OF THESE VERY SPECIAL CHILDREN AND WOULD INVITE THEM TO JOIN OUR YAHOO GROUP AND FACEBOOK GROUP FOR SUPPORT, ADVICE, AND INFORMATION.

Elle, 2008

Levi, 2010

 

Danny, 2005

Are your eyes open yet?

These four will not survive without a family

Brinleigh, 2007

Take a good look at these faces.

Commit them to prayer.

And someone, please, step out in faith

And say YES!!!

My weekly posts will be on a small break because I am going to China this Friday to 

adopt my son!

If I can gain access to an internet and have a moment to spare

I will try to post next week.

Here is my son!!!

Simon, 2007

CHOSEN

~Katie~
hookedonfaith05@gmail.com