Waiting for My Family

Although our sweet son Mycah's condition is very rare, last week I came across these two sweet young ladies who have also been diagnosed with CAH.  This is SO manageable here in the U.S.  I am happy to talk with anyone who would like more information on parenting a child who has adrenal insufficiency.  Both of these girls have a $4000 grant available for qualified families that choose to use WACAP (our amazing agency).  They are currently on the shared list, however, and so their file can be pulled by any adoption agency with a China program. 

Louise

When Louise came into care at 5 years old, she was very shy and quiet.  

When anyone would talk to her, she would lower her head and rarely speak back.  At 6 she was placed with a foster family.  She enjoyed this very much and is very close to her foster brother who is wheel-chair bound.  After almost 4 years with her foster family, she is a more confident child.  

She enjoys school and will answer questions out loud in class.  Louise loves to help!  She will often help her teachers with classroom jobs.  Helping her fellow classmates and her foster brother puts a smile on her face!  Her shyness has all but disappeared, and her caretakers say she has an “inner heart as bright as the sunshine!”

Jenni  

Jenni has been in her orphanage since she was very young.  

She is said to be an “extrovert”, but is initially shy with strangers.  She attends school at the orphanage and is a hard worker.  Concepts taught by her teachers are easily grasped.   At age 7, she knew 10 Tang poems, several children’s songs, could write simple Chinese words, and knew simple addition and subtraction.  Drawing, however, is what she loves!  She likes to draw people and share her works with others.  Her teachers and caretakers all like her and praise her as a good helper.  Her caretakers say she although she has “deep emotion” for her orphanage, she “hopes to have a real home in which her parents love her.”  

Both of these sweet girls have been diagnosed with congenital adrenal hyperplasia.  Their adrenal glands lack an enzyme needed to make certain hormones.  This is treated with daily oral medication (typically 3-4 times a day) for life.  

There are some wonderful resources available for families affected by this condition. A file review by a pediatric endocrinologist is suggested as well.

• National Adrenal Diseases Foundation: www.nadf.us
• The MAGIC Foundation: www.magicfoundation.org
• The CARES Foundation: www.caresfoundation.org

And just so you know, my CAHer is full of life and love and it doesn't slow him down one bit!  Love our boy! 

Sweet Grace

Update:  My family FOUND me!!!

This sweet little face belongs to Grace.  

As we come upon Mother's Day in a couple more days, I cannot help but think about the millions of children who still desperately need their very own mommy.  Like Grace.  Although her nannies describe her as timid and shy, she gets along well with others and is said to be energetic.  She loves to listen to music, read books, and play with toys.  Dolls happen to be her favorite, and she likes to play hide and seek.  Grace has been diagnosed with CHD, specifically VSD and pulmonary hypertension.  Grace will soon be 6 years old.  Her height, weight, and physical development are consistent with most other kids with a similar diagnosis.  Test results and images are available for her family to see, as well as a video.  On paper, her condition can seem bleak.  The reality is that she needs a family soon...really soon.  

A family that is willing to love in spite of the risk.  

A family that knows this child is more than medical test results and papers in a file. 

A family who knows she is their very own beloved daughter.

Grace’s file is currently with WACAP and she has a $4,000 grant for qualified families.  Please email familyfinders@wacap.org for more information.  

Plenty of resources and encouragement from families of other heart children are available.  The following sites are great places to learn more about CHD.

Johns Hopkins Children’s Hospital

Little Hearts

Kids with Heart

Congenital Heart Information Network Resources

Yale School of Medicine

China Heart Children Yahoo! group

To learn more about parenting a child with severe CHD, you can check out this family’s blog as well as this family’s blog.