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!

Life

I want so badly to keep this blog up to date!  Clearly it's hard for me so here are some happenings of the last few weeks. 

School has started!  Hallelujah!  Anya is having a wonderful year.  Not one bad day so far.  She is in a regular classroom at least 80% of the day!  She asked every single morning for the last 3 weeks of summer vacation if she was going to school.  I finally got to tell her yes!  We are trying something new this year.  I have always transported the girls to and from school.  We decided to give the bus a try this year.  It's been a big success.  Anya is a huge bus fan!  She looks forward to it every day.  The last time I had a child on the bus it was Oksana quite a few years ago.  Her behavior was so horrible that I pulled her off.  I couldn't take one more day of dreading the look on the bus aide's face when they pulled up.  She is doing great so far this year on the bus and they have an absolutely wonderful bus driver and aide. 

School so far for Oksana has been up and down.  She's not being aggressive to other people often which is a huge blessing.  She is being aggressive to herself pretty much daily and being verbally aggressive towards others.  Thankfully the majority of her day is smooth.  We can not get her to stop wetting herself at school.  She was in pull ups and we had to move her to diapers because she was soaking through everything constantly.  She knows full well how to ask to go to the bathroom and she will ask when she feels like it but if she's busy she just pees herself and moves on.  It's infuriating.  She's been in pull ups for a pretty long time  now and I was trying to spare her having to wear diapers at 11 years old so I held out and held out hoping she would stop.  Finally I couldn't take any more urine.  Every morning her sheets were SOAKED, her pajamas were soaked, she was going through multiple outfits a day, her wheelchair was wet, etc.  It was gross.  I finally gave up and put her in diapers because they hold more.If you are wondering if she can control it the answer is a resounding yes.  Today she was dry all day despite long drives, lots of activities, a restroom that was far away, etc.  She stayed dry because she knew I wouldn't let her participate if she was wet.  Funny how that works, isn't it?  I asked her why she can stay dry all day despite the circumstances we were in yet when she is sitting in school right down the hall from a bathroom she wets herself.  She had no response.  She also could care less if she is wearing diapers. 

Cheer started last week for the girls.  This is Oksana's first year on the squad.  Everyone was glad to be back!

The boys haven't even started school yet.  They go back on Wednesday though they did have a week's worth of work to do last week to prepare for classes this week.  In a couple of weeks we are going to spend a day at the college Clayton chose for preview day.  They invite those who are seriously considering Greenville out with their families to have a day of activities.  I have no idea what activities but I am looking very forward to it.

Last week was my first week working at home after finishing training for my new job.  It's quite an adjustment but once I get comfortable I think this is going to work out perfect for us.

Tuesday Oksana is seeing a neurosurgeon.  After her MRI the neurologist told me she saw some very slight abnormalities but it was nothing overly concerning.  After discussing it with her team they decided that considering Oksana's issues with still no answers it might be worthwhile for her MRI to be reviewed by a neurosurgeon just to be sure they also think everything is fine. 

That's it for now.  Since I haven't been great about updating I'd be happy to answer any questions you might have in the next post.

Bullet points

I'm finally taking a minute to catch up!

- Oksana is doing well.  Yesterday was her last day at her behavior school.  Next month she will start at her home school where Anya goes.  Her urologist couldn't find a reason for her incontinence.  They were shocked and really thought she had neurogenic bladder.  They are trying a medication that should help her hold her urine longer and empty more completely when she goes to the bathroom.  Bowel issue remain the same.  She only goes with an enema.  She had a MRI and spinal tap last week.  So far nothing out of the ordinary on those.  There are no answers.  It's incredibly frustrating.  Luckily she is pretty stable right now physically.  Emotionally she is having ups and downs but still manageable. 

- Summer school ended for both girls on Friday.  This means that we have 3 1/2 weeks to survive!  So far this summer has gone really well.  Oksana goes to camp Monday-Wednesday-Friday for the next two weeks.  Tuesdays and Thursdays she gets to sleep in and rest.  Camp is long and fun and exhausting!  After that she only has 1 1/2 weeks left with no school or camps.  Anya isn't doing any camps so we will just have to keep her entertained for a few weeks.  Easier said than done!

- Clayton is going to start his third week of musical theatre class next week.  At the end of the week they will do 2 performances of Peter Pan.  He is a pirate and loving getting to sword fight and die!  After this week he gets to just relax for the rest of his summer.  The boys don't start school until after Labor Day so they still have a good solid 5 weeks.

- Evan did a camp at the barn last week.  This one wasn't one he was working at.  It was an advanced camp learning more about different types of riding including dressage, cross country, 3 day event, and endurance trail riding.  This week he will be a camp counselor again at a camp for beginners.  After that I think he will have the summer free too!

- I think the biggest new thing in our family right now is that I got a job.  I think last time I updated on my job situation I had left the school in search of something I could do from home because managing work outside of the home with the girls various issues was becoming incredibly challenging.  Originally I had planned to take classes to become certified as a medical coder.  My friend is a coder and works from home.  She loves her job.  Back when she was certified there was an abundance of jobs available.  I took an anatomy class and a medical terminology class.  The next step was to sign up for the coding classes which would cost over $2000.  We knew this going in and we were more than willing to do it for the benefits knowing we could pay it off when I got a job.  About a week before that I got a text from my friend saying that jobs like I was looking for weren't coming around as much and I might have to wait to find a job.  I was willing to wait but I decided to do some research before I signed up for more classes.  What I found is that there is very little out there part time from home.  I knew going in I would have no experience which would also be a huge disadvantage. 

We decided to pray about it before we moved forward.  In the meantime I have another friend who works from home.  It is a position with a major corporation so I had no worries about it being legit.  She had been working for them for a number of years and she loves her job!  It just so happened that a few weeks earlier she had told me they had an opening.  I had not been interested because I was working toward coding certification.  I decided to send her a quick text and see if they were still hiring.  She said they were and sent me the description.  There were pros and cons.  It was an at home job but first I would have to do about 3 months of in office training.  It paid less money but it would be an immediate job with no wait and instead of putting thousands into training they would pay me to train.  It is 29 hours a week and I really wanted more like 20 but that wasn't a deal breaker considering it was from home and I could work any time I wanted to.  After talking it over with Larry we decided to start the process of applying and just see what happened.  It all happened fairly quickly after that.  In 2 weeks time I had a phone interview, an in person interview, a screening process to make sure I could work fast and accurately, reference were checked, and I was offered the job! 

I've been in training now for 2 weeks.  It's kind of hard to explain what I do.  The very simple description is that we manage freight invoicing for major corporations when they ship their products.  Believe me when I say it is WAY more complicated than that! 

It's been extremely challenging managing child care schedules during the summer but we have a good plan in place.  Thankfully Larry has a job willing to be flexible during this time and allow him to work from home when needed, and we have a respite worker who is also on summer break that is stepping in a ton for us.  I work 9-2 so once school starts it will be far less challenging.  The work itself is also challenging but in a good way!  It's a lot to learn, but every day I get better and learn more.  I am working on getting everything set up in my home so that when I finish training I am ready to go.

- Larry and I went through marriage mentor training a few months ago but decided not to mentor at that time because of everything going on with Oksana.  We recently learned that they have a bunch of couples waiting to be mentored and they need some help so we are seriously considering stepping in.  It seems a crazy thing to do right now but it is only a 6 week commitment.  We shall see.

I think that pretty much sums up the last month or so! 

The Boys

I'm going to do an update on the boys.  I know most of you read this to learn about the girls but our boys are pretty cool people!

Let me start by saying that I absolutely adore having boys.  In fact at one point I said I would not have any more children unless I could be guaranteed all boys.  Having said that, raising young boys is not easy work!  If you are raising boys between about 3 and 12 and you wonder how you are going to live to see tomorrow I have hope for you.  My experience is that the teen years with them are awesome.  They may be my very favorite ages yet, though 2 comes in a close second.  Oh don't get me wrong, we still have raging hormones, attitudes, grandiosity that makes them think they are the knower of all things because they have lived to be teenagers, etc.  There are days when I want to bop them upside their cute little heads and remind them that the world does not revolve around them.  I don't want to make this sound like my boys are some rare version of teenager that came from an alien land.  I'm just saying that I'm really enjoying the young men they are becoming and the relationship that we get to have with them in this new stage.  It's pretty awesome.

So let me tell you a bit about these 2 "man boys" living in my house ;).

Clayton - Clayton just turned 17 and is going into his senior year of high school!  He's really finding himself and stretching himself.  It's a cool thing to see.  He just got back from 5 days in New York with his buddy.  The fact that he did this trip is an absolute miracle.  This is my "stay in the safety of your box" kid.  It was hard.  His friend is even more of an introvert than Clayton which meant he had to step up and take control in many situations.  They spent a fair amount of time in their hotel room decompressing because the city was overwhelming to them buy the did it!  They saw 3 musicals on Broadway which blew their minds.  They navigated the airports and the city by themselves.  They did things like check into a hotel, find their shuttle, handle a room key that wasn't working, deal with rude people trying to swindle them on the streets, and more!  It was an incredible growth experience!

What an incredible opportunity to see this on Broadway!

Believe me when I say that he would have done anything to see this but walking by it and dreaming was all he got!

Phantom was his favorite.  The production blew his mind.

This was right across the street from their hotel.  Since Clayton was the constable and his friend was Tevye in Fiddler for their school it just made sense that they should see it on Broadway.  They loved it!

The view from their hotel.

This week Clayton was at a week long camp at a local college taking apologetics classes.  He spent the whole week learning how to defend his faith and answer hard questions. He absolutely loved it.  He was with his best friends and got to spend a week in a college dorm.  I kept being reminded that some day soon I will be doing this but I won't be going to bring him home in a week!  I can't imagine that.

In another week or so Clayton starts a musical theatre camp and he will be a pirate in Peter Pan at the end of the month.  When he isn't traveling or doing camps he is working as a janitor at our church or sitting in front of his computer, reading, or texting with his friends.

Clayton has chosen his college already.  We toured 2 schools with the intention of touring many more, but when we left the second one he assured me that he didn't need to do any more tours because he had found his college.  The school he wants to go to is Greenville.  It's a small Christian college and we were beyond impressed with it.  It is an hour and a half away.  I never in a million years thought Clayton would go away to school so that tells you how impressive this school was!  He wants to go into psychology but has no interest in being a therapist.  He wants to do research. Now he is working hard to get scholarships because this is not a cheap school, but he is very determined.


Evan - Evan is just about to turn 14 and will be going into his freshman year.  He's still got some little boy in him that Clayton has lost but it is slipping away faster than I want it to!  He's different than Clayton in a lot of ways but equally a pretty amazing kid.  If you have been here long you know that Evan's passion is horses.  He has been riding since he was 9.  The United States Equestrian Federation has a lettering program so that students who don't play traditional sports, but instead ride horses, can also letter in their sport.  Evan lettered for the first time this year!  The main requirements are 100 hours of riding time and proof of 3 competitions.  I'm thrilled that he has this opportunity as a homeschooled student who loves a non-traditional sport!

At this point Evan's whole life revolves around horses.  Here is a sample of some of the things he does:
- He is in a working student program.  He works a minimum of 10 hours a month at the barn.  Over the summer it's usually way more than that.  He grooms horses, does laundry, cleans and organizes the barns and tack, etc.  For this work he earns free ride time and discounts on his competitions.
- He is on an equestrian team that does one 2 hour lesson every month.  This team competes together, works together, etc.  It's a step beyond the kid who just wants to take lessons because they like horses.  This is more intense.
- He works as a camp counselor.  The barn he rides at has camps throughout the summers ranging from young kids who may have never even been on a horse all the way up to Evan's level of riding.  For camps below his he works by getting the horses for the kids, tacking the horse (or helping and teaching the child to tack if they are able), leading the horses with kids who can't ride independently, and overall doing whatever the instructor needs him to.
- He has his own camp too.  This year they are doing an eventing camp.  Each participant is assigned a horse for session and will be caring for their horse daily, stall cleaning feeding, grooming etc as if it was there own horse. Also, they will focus on learning about other disciplines including 3 Day Event, Cross Country, Dressage and Endurance Trail riding.  He is going to love this!
- As if that wasn't enough, remember that he still has his own weekly lessons!

This is Evan when he first started riding at 9!

This is Evan now!

Now you see what I mean when I say his life revolves around horses!  When he isn't with horses you can find him playing games on the computer with his buddies from school or reading.

Disney pictures part 2

Make sure you see my first post for more about our trip.  These are some of the pictures I took.  They are all out of order.  Sorry about that.  It's killing me not to fix it but I don't have time to be particular right now!

Our "home sweet home" for the week :)

Love this!

Isn't this cool?!  It's at Give Kids the World

You will have to be a Harry Potter fan to appreciate some of these!

Carousel at GKTW

Each child is given a star at GKTW.  This is just a few of them.  It was incredible!

MY FAVORITE!!!  I was so excited!

He had his own cafe!

Butterbeer!

Again, if you are a Star Wars fan you get what these are.  I don't know but they loved Oksana!

We had ice cream every single day!  I love this picture of him!

I was so excited to find chocolate frogs (another Harry Potter thing)

On the Hogwarts Express

I happen to be addicted to Rice Krispy treats.  This made me very happy!  Yes I did buy it!

You have to have an ice cream Mickey at Disney!

Cinderella's kiss :)