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!

Oksana Update

HI THERE!  I've had a couple of requests to update my blog so I'm going to do a post on each member of my family to make it more manageable!  I had to go back and see where I left off.  Goodness, it was 2016!!  I know most of the people who read this started by following our adoptions so I'll start with the girls and I will update on Oksana in this post.

I'm going to make it as short as possible and still get the info in.  That will not be an easy task!  Oksana is 13 now!  She is taller than me.  I keep telling her I'm going to put a brick on her head to make her stop growing ;)!

I'll start with her psychiatric update.  There have been many ups and downs since 2016, but it is possible she is in the best place now that she has been since all of this nightmare started.  By no means is everything perfect, but behaviors that were a daily occurrence are now a monthly occurrence....and sometimes bi-monthly.  It's really astounding.  So many people ask what we think changed.  First of all, I'm not naive enough to think that she is permanently well.  Tomorrow we could back in hell but I'm choosing to enjoy today.  So what might have helped her achieve this stability?  A lot of things.  I think maturity is a factor, a good med combo, her physical regression which has restricted her ability to hurt people, her desire to never go to residential again, etc.  There is no way I could pinpoint one thing.  All I know is we are actually able to function again.

Her physical health has been interesting.  She has continued to regress in many ways and now we have a new normal.  We still have no answers that would explain her physical regression.  Genetics is continually searching.  They are currently looking closer at the gene that causes Parkinson's because she presents a lot like she has early onset Parkinson's.  The genetic testing did not catch it so they just want to double check.  They are also looking at Huntingtons disease, though we think that is unlikely. In the summer of 2017 Oksana had a surgery called a Malone Antegrade Continence Enema (MACE).  Her colon basically doesn't function properly.  Constipation was a constant issue and she had quite a few hospitalizations because of it.  A MACE is not a colostomy.  She has a small stoma in her abdomen.  Each day we put a catheter in it and flush out her colon with a water/glycerine mixture.  This causes her to have a bowel movement within 30 minutes or so.  If her colon decides to be stubborn we can also put medications directly into her colon to help her.  She can still walk but she often needs assistance except for short periods of walking.  I'm sure there is more but I can't think of it all off hand.

Since I posted Oksana started middle school.  She has done amazingly well there!  6th grade had some pretty big ups and downs, but near the end of the year she started to really improve.  She is now in 7th grade and doing so much better.  This is a child whose behaviors were so severe that she had to be put in a school for children with severe behaviors.  This might be the first year EVER that she is not the biggest behavior problem in the classroom.  She has an amazing teacher who deals with her exactly like I do at home so she is getting great consistency.  She is in social studies and science with her typical peers (not graded or with the same assignments), but does all of her other learning in the special ed setting.

We have help in our home now about 5 days a week.  Alexandra has literally become a member of our family.  We just consider her our 5th child.  She is completely responsible for Oksana when she is here, which has been great for my mental health (which I will discuss later in my update).

What am I forgetting?  That seems like an awfully short update for a very complex kid!  If you think of anything I missed make a comment and I'll address it in a future blog.  Here are some pictures so you can see how she's grown!

April when she turned 13

For her 13th birthday we took 2 of her friends to lunch and they all got manicures and pedicures.  This is  Alexandra with her.

Alexandra and Oksana when we played with shaving cream this summer

I love this picture!

Her locker this year.  See the disco ball?!

First day of 7th grade!

Her halloween costume.  She was a hot air balloon!

Just last week in our first snow of the season!

In her stander throwing snowballs at us!