Sunday, June 12, 2016

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 :)


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!