thal adoption part 2

15 Apr

I expected our local hospital, the hemotologists there to know the cutting edge treatment for thalassemia.  They did not.  It’s rare.

I was NOT at all prepared to have to be my girls’ advocate, to research and learn and tell the doctors what i had learned!! If you are adopting a thalassemia child it’s best to consult with a major thal. center and have them write letters to your local hospital instructing them for treatment.

One of the greatest needs for the adopted thalassemia child would be chelation.  Their body would surely need to get out of it’s iron overloaded state, after years of blood transfusions.

Iron overload from years of transfusions affects 3 major areas of the body.

Liver, heart and the endocrine system.

The iron overload can be reversed!

Also, when you are considering adopting a thalassemia child you should plan to transfuse more frequently then China does.

That’s another thing I was not expecting!

My girls were transfused every 2 weeks for the first year home.

Now we are trying to see if they can go 3 weeks. Their paperwork from China told us they were transfused every 8-10 weeks which would mean my girls were functioning at a very low hemoglobin level which accounts for their bone deformity and small stature.

The transfusion days are still a big deal to me, always kind of stressful.

However, I know that it’s just because of the fact that we have lots of children that need to get to different places, and that some of those children are homeschooled right now.  It won’t always be like this.

I think you will be surprised how normal my girls seem, how healthy.  Most people have no idea that they are living with such a serious blood disorder.  They came with huge spleens, that are now normal! They run and play and swim and do gym at their school, you’d really never know, unless it gets close to transfusion time when they slow down (only a little).

Your thalassemia child with thrive under good nutrition, fresh air and exercise.

When our girls first came home they looked sick to me.  They were so weak and toddler-like.  I wondered if that was from thalassemia.  Now we know~ it was from being treated like a baby in China, vitamin deficiency, lack of exercise, the lack of fresh air and general living experiences.

I will always be so thankful to God for the way He has provided for us, and our girls.  I will never forget bringing the girls back to the hotel room, still basically clueless to their health-issues.  I had posted on my blog about the girls and got 2 emails from other US moms that had adopted thalassemia kids.  (Katie and Nicole!!! thank you so much!!!)   I became a part of a yahoo group for adopted kids with thalassemia that they told me about.  I still know very little compared to these moms and others but I’m so thankful for the yahoo group to bounce questions off us, always knowing I will get a response.

Praise God.

I don’t know if this is helpful.  But thanks for reading, if you did. And if you have questions you can always email me :0

I know these posts will be linked to an advocacy website speaking up for some very special thalassemia children in China who need help.  So to God be the glory.

Lainee's first transfusion in the US. April 2011. She had a port installed because our local hospital told us too! Now I know it's not what is normally done for thal patients but I must say I LOVE THEM (the ports) and the girls do to.

my big girl lainee one year home, getting transfused via her port, what a transformation!

lainee playin wii during her transfusion. The girls love to go to the hospital. We have friends there now!! All the nurses, doctors and other staff. They love, love, Teddy the craft lady. It's a blessing. I wondered if they'd have to lay in a bed all day~ not quite!

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4 Responses to “thal adoption part 2”

  1. KT April 15, 2012 at 9:26 pm #

    Can you please go into more details about chelation? I thought it was very hard to get the iron levels down. Also, I haven’t had time to find out EXACTLY what B-Thal is. Does the body break down the cells? Which ones? Or, does the body not make the cells in the first place?

  2. Sherri April 16, 2012 at 8:46 am #

    THANK YOU for advocating for these precious children….and for being so open about this disorder. Ignorance breeds fear. Sharing your story may be just what someone needs to give them the courage for the next step of their adoption journey! Bless you! Your girls are so beautiful…I love looking at them!

  3. S Abla April 28, 2012 at 6:47 pm #

    Thank you so much for your blog. We are in the process of adopting a beautiful three year old B-Thal girl from Liuzhou. We are waiting on the homestudy approval by our state and then we move on to our I800A. We are so anxious to get our sweetie home and begin to work towards a healthy regimen. We have close friends who also have a treasure from China who has B-Thal and we are so glad for their support and knowledge. It is amazing how God is already providing for our dear little one. We were able to “tag-along” to our little friend’s last transfusion, see what our daughter will be experiencing, and meet her future hematologist. We connected immediately with the hematologist and are so grateful that God has already provided her for our daughter’s care. Thank you for sharing your journey with us.

  4. Kelly January 2, 2014 at 9:53 am #

    I have 3 bio kids and 3 kids from China, one with a missing arm, and the other two with HIV. I feel like God is tugging at my heart to maybe go back to China for a Thal child. We’ll see!

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