Saturday, September 29, 2012

First day of preschool!

I can hardly believe my princess is leaving me and going to school! 5 days a week, just like her brothers. 
I get all teary thinking about where my princess came from. From a life of nothing to what she has now. How can anyone question that adopting these children is the right thing to do? 
She will take the bus to school, which I know she is dying to do. But it takes the bus system a few days to get her on their schedule. That's ok, I wanted to take her on the first day anyway!

 Come on people, when do we start? (Notice the Disneyland button in the pics? Always with her)

Ya, my teachers here! Lets go!

Later mom and dad, stop crying, because I'm a big girl!!

Tuesday, September 25, 2012

Munchkin medical update.

 I realized its been a while since I did an update on Jax and the princess.

Of course Arina is easy. She's healthy and happy. I do think she occasionally still refluxes because we'll find spit up on her and the floor from time to time. (Yummy!)
She had a genetics appointment today, basically to tell me what I already know, that she has Down syndrome! Since we don't have a chromosome workup from Ukraine, we have to get one here to use to verify her diagnosis. I fully expected this guy to tell me that he believes she does indeed have Down syndrome, and proceed to show me her markers! But I think when he saw Jax he realized that I'm already a momma in the know! I am interested to see what kind of DS she has, because Jax has translocation, a more rare form of Down syndrome.

For once there is not much to report on Jax. We had our whirlwind of doctors appointments in August so September has been fairly quiet. His heartrate is still up, so our cardiology appointment in October will be a stressful one to see if his heart or PH is being naughty. I'm wondering if letting him off oxygen so much is making his heart work harder, even though his sats stay good.
Also he's been having problems with his airway closing off. I always think its a plug in his trach, but don't suction anything out. Even if I change his trach it doesn't help. Either he's having another bought of airway flopping below his trach, or he has scar tissue down there that is obstructing. We have a call into ENT to get her advice.
He had a CT with contrast of his neck and chest right before we left for Utah. All I know right now is that it doesn't show any active clots. That doesn't really help me any because we know that he hasn't clotted since starting the lovenox. What I want to know is how his veins in his chest are looking. Since he clotted all the major veins off, he has collateral's that are just a traffic jam of blood in his chest! We'll get to see the CT at our follow up with Hemoc.
GI-wise he's been pretty good. Still has his boughts of retching once or twice a week. His belly is a bit distended, but this started when the airway problems started, so my guess is because he's breathing faster his tummy is getting extra air. He tends to gather a ton of air in his belly when he breathes fast!
Jax may also be going to school for the first time! His ped has approved it, and I really feel he'll benefit from being outside the walls of our house, with other people to interact with. I may yank him the first time he gets sick, but its worth a try!
With Arina starting preschool in a couple days, I may actually have time during the day when I have NO kids at home! What the heck am I going to do with myself? Probably wander aimlessly around the house, or sit in a corner rocking!

Arina is so funny, she LOVES the Disneyland buttons. She knows just what people she needs to lay the charm on to get a button. We usually leave Disneyland with multiple buttons, and I know we have over a hundred in our house. She has one or two or ten in her hands at all times. Who needs expensive toys??

Sunday, September 23, 2012

A piece of history

First things first, I have made a facebook page for the blankies. I'm going to delete the blog and just use this. Facebook is much more popular, and I think it will be much better there, so please click on the link and "like" our page and share it with everyone!

I'm really big on making sure every opportunity that comes our way that is history in the making, or something that will never happen again, the boys see it. So when I heard the space shuttle Endeavour was going to be flying over landmarks just minutes from our house, I knew we had to be there!
When we were in Florida on Jax Make a Wish, we got free tickets to the Kennedy space center. Trying to find the time to fit everything in was impossible! But we knew that we may only visit Florida once, and Mondo's obsession with all things space, military, and history, he REALLY wanted to go. So on the day we flew home, we hurried out there. Endeavour was actually on the launch pad at the time. If you remember on its very last mission it was delayed a few weeks, and sat on the launch pad that entire time. Well we just happened to be there during those few weeks. 
Here's the kicker, the tour that takes you to the launch pad was two hours long. We didn't have two hours or we'd miss our flight. (We almost did anyway) Looking back now I think we should have missed the flight, because now we missed seeing the shuttle, and that's something we can never take back!

Disneyland was one of the landmarks that the shuttle was flying over. We never need an excuse to go there! Mondo wore his Endeavour shirt from the Kennedy Space center.

And we waited, and waited, and waited. It was about an hour past the time it was originally scheduled to come, but man it was an amazing sight!!
The only bad part was it flew directly overhead, so seeing the shuttle was a bit hard. If we'd stayed on Paradise Pier I think we may have gotten a better view than between the parks, but oh well.
We let Mondo take the pictures. He is taking a photography class in school, so Ray actually let someone else touch his camera!
Endeavors last flight! (Notice the fighter jets on the sides)

So amazing, and I'm so glad we took the boys to experience it!

Thursday, September 20, 2012

Where else can you go that will put your child, wheelchair and all, on the ride?

Where else can you go and have a character sit for 20 minutes by your child because they understand that he's been through a lot and deserves some extra attention?

Who else is going to sit on the ground and engage your child?

Or kneel on the ground in a beautiful, pink dress?

Or seek them out time and time again?

Now that we live a mere 30 minutes away, this is usually where our weekends are spent. I love having a place that truly engages Jaxson's attention.
Thanks Disneyland, for making our special children truly feel special!

Tuesday, September 18, 2012

It doesn't have to be scary!

Having a child with special needs doesn't have to be a scary thing. Yes, there will be scary days. Perhaps a medical diagnosis, or a new developmental diagnosis. You take those, you work on them, and you move on. Me personally, I don't feel like caring for Arina is any different than caring for my other children. Each child has different needs, and we work on all of those. But we are a family, all of our children are equal, and all are treated the same.

Currently Arina is totally nonverbal. She has zero, full words. We get a ba or a da, but that's about it.

But this girl can sign like a pro! Once we bought her Signing Time, she just took off. I'm happy to report that right now, she has no communication problems. She doesn't get frustrated when she can't talk, we know exactly what she wants by her signs. Its been a Godsend! So if you haven't pushed signing with your child with special needs, do it now!
Yes there are other frustrating things. This girl is busy, busy, busy. She doesn't sit still for 2 seconds! I have to quadruple check to make sure the doors are locked, because is she gets out, she'll be gone in no time at all. That's a very scary thought!
But my little girl can learn!

She can stretch,

And she can dance.

You just have to give them the tools. Don't ever underestimate their abilities. I just hope someone can see these pictures and have hope, just like these did for me about two years ago.
I noticed a huge difference in Arina and my almost 2 year old niece when they played together. My niece seemed much more mature than her older cousin. For once Arina didn't seem as "normal" as I thought she was! But Arina is who she is, and she is an amazing little girl, just like my niece!

Don't ever Dis my Ability!!

Saturday, September 15, 2012

Utah trip part 2

The Utah state fair just happened to start while we were there. We were excited because the fair was always something we did together.

We did lots of fun rides and ate lots of yummy food.

We also hit the merry-go-round at our favorite mall.

And of course, lots of swimming!
Can't get this girl out of the water!

Arina's birthday was a few days after we got home from Utah. Of course grandma couldn't bear to miss a birthday party, so she had one of her own.
I think Arina spit on her cake more than blowing, but that's ok!

Her first ice cream cone that SHE got to hold herself.
No, I'm a super clean food freak and very rarely give her messy stuff to eat by herself.

And the best pictures of the night....
My warrior boy. My pure joy!

Thursday, September 13, 2012

Utah trip part one

Our trip to Utah was so much fun! I really miss home, and there are a lot of good and bad things about moving, so I have to concentrate on the good. Like in Utah, Arina would have gotten a measly 4 hours a week of preschool. Here she gets 3 1/2 hours, 5 days a week. No comparison on where she will do better! Jax health and doctors was another huge reason, probably the most important reason we moved. Not to mention that every weekend we are trying to decide what to do because there are so many choices! Going back to Utah only to visit made me see there is actually a lot to do there. The first day we went with my parents and sister (who actually also lives here in California too) to the zoo.

Arina donating a dollar to the cockatoo.

Arina and her cousin Hailey.

That tiger is intimidating even through the fence!

The next day we hit Park City to do the outlet stores and alpine slide. It was a little nerve wracking taking Arina up on the lift. Mondo was super stressed and flipped out every time she moved!

A round of applause for the alpine slide!

She had her hands up the entire time on the alpine coaster! So funny.
Literally a second after I snapped this pic the rides emergency brake hit because apparently Ray was going a tad too fast. It stopped sharp and Arina hit her face on the foam pad in front of her.

Poor baby. It would be really nice to know that brake system was there. It didn't happen to me and Carter! She was fine, didn't even leave a mark. I think it scared her more than anything.

Later that night with Hailey. Arina played really well with her. Its the first time she has really been with another child her age for a long period of time.

For the most part!
"Umm, excuse me, I believe this is a one person seat!"