Sunday, February 23, 2014

Day 23 - Sarah Moles

I can't believe Sarah has been home with us for almost three and a half years.  That scared, sad little girl has transformed into a beautiful, sassy, sweet almost 6 year old.  She is our greatest blessing and dearest joy.  Life is so much sweeter and full with her in it.  She is such a neat little girl, very complex and at times humorously challenging.  She wears dresses and leggings every day, comfort apparently being priority one.  She loves princesses, My Little Pony, Star Wars, and Lego.  To our surprise, and my husband's delight, she has decided to forego the Disney Princess birthday party we were planning; asking instead for a Lego Star Wars party.  To top it all off she wants to dress up like Darth Vader (yes, she already has the costume).  There is never a dull moment with "Darth Sarah".  She is who she is, and we couldn't be more proud of how comfortable she is with herself.  She defies labels, she knows who she is.  She likes herself, and people see that and love her even more because of it.  

This year has been wonderful, heartbreaking and precious.  So many of our questions about Sarah's health and development have been answered, but those answers have left us with even more questions.  Sarah was born with Tetrology of Fallot, repaired in China when she was 11 months old by a volunteer Western doctor.  The repair was done well according to her cardiologist, and things are going wonderfully with that.  She does take medication daily to inhibit the growth of an already enlarged aortic root, but has no physical restrictions, and the doctor is hopeful that she will "grow into" the enlarged root.  The valves on the right side of her heart are leaking a little, but since she is not symptomatic, we are waiting to have the valves replaced when it is necessary.  Our prayer is that by the time she needs surgery they will be able to replace the valves using a much less invasive procedure than what is commonly used today.

Sarah has also struggled with her speech since coming to live with us.  Initially, we thought it was a simple delay, which we kind of expected considering her background.  We went to speech therapy weekly, but she didn't seem to be progressing.  Her language was improving immensely, but actual speech wasn't.  She was struggling with articulation, and was obviously very frustrated with not being understood.  In the spring, we began to worry that something else may be going on.  We went to a craniofacial doctor and Sarah was diagnosed with a Velopharyngeal insufficiency.  A VPI is a disorder resulting in the improper closing of the sphincter during speech, allowing air to escape through the nose instead of the mouth.  This decrease in air pressure and control results in the ability to articulate certain sounds.  It also prevented her from being able to reshape part of her mouth which has really helped her speech.  During this whole process, the team of doctors we were working with suggested that Sarah be tested for a genetic disorder.  Since the VPI, her heart, and the extra thumb (which we had removed shortly after bringing her home) are all considered birth defects, it made sense for Sarah to have genetic testing.  The results showed that Sarah has a deletion on her 22 chromosome.  The associated syndrome is often referred to as "22q" or DiGeorge Syndrome.  There are many physical and mental development health issues that can come with the syndrome.  There is no way of knowing whether Sarah will encounter any more issues as she gets older.  Not knowing what her future holds is so hard.  We were heartbroken by the diagnosis.  We love Sarah so much and want her to live a long, healthy, fulfilling life.  We understand that most of these things are out of our control, and that all we can do is enjoy every day we have with her.

Heart defects are often related to a genetic disorder, but this isn't always the case.  Even with this diagnosis, we know that Sarah was wonderfully made by her Creator.  Her life is so precious, and has impacted so many people in more ways than we can count.  We wouldn't trade her for any other little girl in the world, even one with perfect chromosomes!  Adopting a child with a heart defect can be scary but, we promise you, it can be the BEST decision you ever make.


SarahinSC said...

Beautifully written Maria! God had the perfect plan for you and Todd to be Sarah's parents!

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