Anya Update

Oh Anya!  This girl is life, and love, and rotten!  Anya is 11 now and she loves cheer, Jojo Siwa, and music.  I can't remember if she was diagnosed with ADHD before I stopped blogging or after.  We have worked hard to find meds that would work for her, but she is doing well now and the meds didn't remove any of the stubborn....just added the ability to sit still and focus on being stubborn!  LOL!

Anya has also had a big medical update since 2016.  Back in Bulgaria we were told that she had severe reflux and had a fundoplication which is, in very simplistic terms, a surgery to stop things from coming back up.  So occasionally over the years she would eat and then complain about her stomach hurting and sometimes she would throw up a chunk of food.  We knew she had the fudo so we didn't think much about it, just figured bigger pieces of food couldn't get down.  Well over the years it has gotten worse and worse.  She was complaining of pain at every meal and her need to throw up food to remove it from her esophagus was happening more and more.  In the meantime, she began losing weight which we thought was from her ADHD meds.  After a particularly horrible episode in a restaurant I called the doctor.  They got her in right away to have a swallow study done.  Through that we learned that she had a condition called achalasia.  So basically her lower esophageal sphincter doesn't work properly.  It doesn't open when it need to in order to allow the food in her esophagus to pass into her stomach.  As a result her esophagus has backed up with food and is so stretched out that there is very little peristalsis to push the food down the esophagus.  After the swallow study Anya was put on a soft food only diet and 10 days later she was in surgery.  Just this past July she had a Heller Myotomy (they cut the muscle of the esophageal sphincter to allow it to open), a partial fundoplication, and had a g tube placed.  Since then she is back on a normal diet and has not once thrown up or complained of pain.  Weight gain is our focus right now.  Because our insurance company won't cover anything I am feeding her a blended diet through her tube.  I'm working with a dietician and we are trying to find the right amount of fat, quantity, etc to get her to gain weight.  It's not an easy task because the more we feed her by tube the less she eats by mouth.  We don't want to lose her oral feeding but we still need to make her gain weight.  Right now we are going to a g tube clinic on a monthly basis to weigh her and readjust her feeds.

Anya is in 5th grade now so next year I will have 2 in middle school!  She is doing great in school.  Besides the occasional extremely stubborn day, she has very few issues and the kids at school just love her.

That's all I can think of now.  If you have any questions leave them here and I will answer them.

At her 5th grade musical.  Her teacher got this shot from the front row.  She is such a character!

The theme of the musical was around the world.  We borrowed this Ukrainian outfit from a friend but we called it Bulgarian for our purposes :).

Cheer is her passion.

She loves to stunt!

She was Jojo Siwa for Halloween.

We think she got this pose from Jojo.  It's her favorite!  LOL!