Sunday, June 12, 2016

DISNEY!

Time to start knocking out some updates.  First on the list is Disney!

This trip was amazing.  I'll give you a quick overview of each day and then I'll post pictures.  I'll post the pictures taken by the photographers at the park and at Give Kids the World in this post.  I'll do another post with some of the pictures that I took.

Day 1 - Our flights were great.  The girls were so excited to fly.  Anya giggled hysterically when we took off and then told us there were bubbles (clouds) in the sky!  Oksana held on for dear life but loved it!  She asked me at one point what she would do if she had to go potty.  I told her she would go potty in the bathroom on the plane.  She was shocked!  She said "On the plane?!  I have to see this!"

After we got our rental car we were off to Give Kids the World (GKTW).  That place is amazing!  We enjoyed exploring, getting to know our "home" for the week", and we went swimming before we got to bed so we were well rested for day 2.

Day 2 - We went to Universal Studios and saw Harry Potter!  In fact that's pretty much all we saw.  It was so amazing but VERY crowded.  We got to have Butterbeer, ride Hogwarts Express, eat at the Three Broomsticks, and our favorite part was the Gringots ride.  It was incredible!  It was also our girls' first roller coaster and after that they were hooked!  Luckily the wheelchair and the nice little pass they gave us made the crowds a bit easier to tolerate.  Still, by the afternoon we were all hot, cranky, and done with people!

We went back to GKTW, rode some rides, ate dinner, had ice cream, and crashed!

Day 3 - Magic Kingdom!  I loved MK!  The big part of Oksana's wish was that she wanted to meet Pocahontas.  They arranged a private meeting for them and she absolutely loved it!  We spent that day meeting LOTS of princesses, riding rides...mostly roller coasters per the girls' request, and eating lots of yummy stuff!

Day 4 - Magic Kingdom day 2.  This time we decided to go late afternoon and stay until night.  We learned then that this was much better for our family than going early.  When we got there it was hot but we were refreshed and ready to have fun.  By the time we got tired it was cool and beautiful.  We rode a bunch more rides this day and saw the electric parade.  It was such a fun day!

Day 5 - Our down day.  We spent the day swimming and eating ice cream at GKTW and then met some friends who live in Orlando for dinner.  It was a great break and the kids had been dying to swim again so it worked out great.

Day 6 - Hollywood Studios.  I wasn't sure I would like this at first but it turned out to be a great day!  We did the late afternoon schedule again and loved it.  We got to see a Frozen sing along show, the boys got to meet Star Wars characters, and we got to see their light show, Fantasmic.  It was an amazing night!

Day 7 - Check out at GKTW, went to Disney Springs for some lunch and shopping, then off to the airport to head home.  Oksana was really ready to come home to her own bed but I could have easily stayed another week.  It was such a wonderful trip!



Gaston was hilarious!





One of my favorites





Another one of my favorites

The look on her face when she first saw Pocahontas


I love this picture.  Anya being a nut and Oksana looking at her in awe!

She had no idea who this was but he loved her :)



I'm not a big Star Wars person but this guy was creepy!  The boys loved him!






Because dads need hugs too!



Oksana's star on the wall at Give Kids the World



Peek a boo!

This picture makes me giggle!  She did not want to get close to him!







Tuesday, June 7, 2016

Response

Thank you so much for your thoughts on my last post.  I'm keeping the blog.  So onward I go....

I'll be back soon to post about our trip to Disney :).  Long story short....it was amazing!

Monday, June 6, 2016

Talk to Me

I'd love your input.

I'm struggling to keep up with this blog.  I like it because I can be more detailed here than I can on Facebook and I know some friends here don't have Facebook.

At the same time I feel like I double post everything and I really don't have time for that right now! 

Letting this go feels wrong because I've done this through our whole journey with the girls.

I've debated a private Facebook page just for updates on Oksana where I can give more details, but will I still be double posting?

Thougths?

Wednesday, May 4, 2016

Downhill Again

Since Oksana came home she has slowly but steadily gotten stronger.  By no means was she were she was a year ago, but she did regain some function that she didn't have when she came back.  There are times when you see her getting stronger and you hear "we have no answer" over and over again that you start to think you are crazy.  Maybe this isn't such a big deal.  Maybe she is fine. 

Then a day like today comes.  It's been coming for the last week or so.  Little signs that something wasn't right.  Not even quite enough to raise a red flag.  Mood was a little off, toileting started to not be quite as on target, a tiny bit more struggle to get around, etc.  Then Monday night she could barely walk at all.  She ended up walking on her knees and crawling to get where she needed to go.  Still, I thought "Well she has good days and bad days.  This is a bad one and she will be fine soon." Yesterday I noticed that she was really struggling to keep her head up, still wasn't walking well, and had another accident.  Red flags started to go up.  Then I got a text from her teacher this morning.  She had another accident and had been struggling to move around at school recently.  That's what finally made me realize this was not getting better and was actually getting worse.  I have spent my whole afternoon calling doctors.

As of right now I am working on getting her an appointment with neurology.  I've also contacted her pediatrician to see about some more blood work.  I've contacted her GI doctor because her GI symptoms are worse too (not sure at all if it is related but it has been going on for a long time).  I think she is going to want to do a barium enema.  Oksana will not be happy.  Yesterday she had a follow up thyroid test so we are waiting on those results too. 

I guess now we just wait and see how this progresses and how long it lasts.  UGH!


Friday, April 29, 2016

Checking in

With 4 kids it's pretty hard not to be somewhat busy, but the last month has felt insanely busy.  I hate living like that.  Every time I jump on the computer I remind myself that I need to update the blog!  It's so much easier and faster to make a quick status update on Facebook than to sit down and write so I have neglected this.  But I'm sitting still right now and ready to go.  I'll just give updates on everyone.

Oksana - After the shock of the genetics report we found an Undiagnosed Disease Clinic and we are trying to see if they will accept her to see if they can get a diagnosis.

Oksana's 11th birthday was earlier this month.  Rather than a big party she chose to have a bunch of small celebrations spread out over a week.  She got to have dinner and ice cream with her BFF, go to the American Girl Store, party with her respite center, and more!

She decided last week that she wants to join the cheer team that Anya is on.  I think she will love it!

We had an IEP meeting and decided that she will go back to her original school (where Anya goes) because she has been doing so great.  You would think I would be thrilled.  Instead I'm rather nervous.  At her current school no matter what she does she won't get kicked out.  She can't stay there forever just because I fear her getting worse and getting kicked out of school again.  It just makes me nervous.

Overall she has been doing great.  The last week has been touchy and she has raged a couple of times.  My body is responding by going into immediate freak out mode.  Clearly 3 years of being verbally and physically abused has taken it's toll on me.  I'm just praying it was a rough week and she isn't getting worse again.

Cookie cake was the treat of choice for our family celebration!

This is the AG Doll that they gave her at the hospital.  Her grandma and aunt took her to the store to get her hair done and get her a new outfit.

Her BFF!  He's an awesome kid who is also on the cheer squad.

Anya - After her ADHD diagnosis we tried Ritalin with Anya and it was a bust.  Our next option was Guanfacine (Tenex) and let me just tell you that this child has a new lease on life!  She is the perfect example of mediation done right.  She is spunky, active, and still gets in trouble.....just like EVERY OTHER KID DOES!  She is so much more calm and focused and the results are showing in every area of her life.  It has just been incredible to see her thrive now that she can sit still for more than 5 seconds!

Anya's birthday is coming up soon.  We don't have anything big planned.  She is obsessed with playgrounds right now so we will be celebrating at a playground with ice cream.  She will be the happiest kid on earth!

Cheerleading is still her passion!  The girl would cheer every day if she could!  The competition season is over but she will have some summer practices to prepare for fall.  We have the best cheer family ever.  They are wonderful families, and the coach and "buddies" love the kids so much.  Cheer has been one of the best things that has ever happened to Anya.

Anya, her coach, and her "buddy"
Anya and her coach at the cheer banquet.  Anya got the "most flexible" award!  LOL!

Clayton - There are so many exciting things happening for this kid right now.  He is preparing to be in his first musical in May!  He is the constable in Fiddler on the Roof.  He's also still actively involved in technical theatre (building sets, sound, lights, etc) and taking voice lessons.

We visited our second college on Wednesday and Clayton told me that our search was over.  He will be attending Greenville College in Greenville, IL.  It was so incredibly impressive.  About 1/2 an hour into our full day there I knew that this was exactly what Clayton was looking for.  Even Evan went with us and now he wants to go there too!  I really can't say enough about it.  Now to find every scholarship on earth because it is expensive!!  He will be studying psychology.  After getting his undergrad degree he plans to get his doctorate and go into research.

Speaking of Psychology.  Clayton took a psychology class last semester and one of his assignments was a research project.  His teacher loved his so much that she asked him to represent his school at the St. Louis Science Fair.  We just found out last night that he won a blue ribbon!  We will pick it up tomorrow and I will get a picture.

June will be a busy month for Clayton.  He turns 17, then he is spending 4 days in New York with a friend and their voice instructor.  They are going to see Phantom of the Opera on Broadway.  Their voice instructor takes lessons from someone in New York so while they are in town they will get to see one of his lessons.  I think it will be an incredible experience!  The day after he gets home he will leave and spend a week on campus at a local college for an apologetics camp.  Basically he will be taking theology classes all week to strengthen his faith and prepare him to defend his faith.  He is very excited about it.

Making "cheese" for the Fiddler set in technical theatre.

His science fair project.

Getting everything set up.

Evan - Horses, horses, and more horses!  That sums up Evan's life!  He takes riding lessons on Mondays.  On Saturdays he works at the barn for a few hours to earn ride time.  He does laundry, grooms horses, cleans dirty tack, organizes the barn, etc.  Once or twice a month he works at a camp or birthday party.  He gathers the horses, tacks them, helps the kids, untacks the horses, etc.  Then once a month he has a 2 hours lesson with his equestrian team, and this Sunday he is also competing at a local show.  My car could probably drive itself to the barn and back on its own by now!

Evan will letter in equestrian in June.  He even has a letterman jacket for it!  It's such a cool opportunity for a homeschooled kid.  There are specific requirements about how many hours you are on a horse, how many times you compete, etc. that are required to letter.  He's worked hard for it.

He will likely spend his entire summer at the barn.  There are camps all summer that he will work and then he will do his own camp as well where he will compete.

Letterman Jacket

Larry and I -  We aren't nearly as exciting as the kids!  If I had to pick a word that sums up Larry's life lately it would be "work".  Oy.....Christmas went right into Easter and things still haven't slowed down!  They should soon.  Summer is normally the lightest time of the year when you work at a church.

I have been working the entire school year at the boys' school.  I have loved every second of it but I recently made the decision to leave after the year is over.  Working outside of the home has been so challenging since Oksana came home.  I'm constantly juggling managing everything and cramming the 2 days I don't work with appointments.  I barely have time to breathe.  Something has to give.  Unfortunately we really still need me to bring in some amount of income.  That led us to decide that I would get certified as a Medical Coder.  My friend is a coder and she works from home.  That flexibility would literally change everything for me.  It's also a career that I can advance in as the kids grow and I have people in college!  In order to get certified I have to start with a Medical Terminology and an anatomy class because I don't have a medical background.  I am about to take my final for Terminology.  After those classes are finished I will take coding classes and then I will have to take a big certification test.  It's a process but I think it will be well worth it.

That's the end of today's update.  My goal is to post weekly now.  Let's see how I do!