Tuesday, June 17, 2014

I'm so sorry to all of our blog readers! I've been a bad, bad blogger!

Things are good around here! Crazy, but those who have 5 children tend to be a tad crazy! We found out right after my last blog that we had to move. We sold our home in Utah when we moved, and haven't been able to buy here in Cali yet, as prices are much higher! Finding a good home, with everything we need was not easy. And of course moving a 3000 square foot home is beyond stressful!
But we have been moved about a week, and we are finally winding down and able to relax a bit!

Jax is doing good as well. He's had some tummy issues. Bleeding out of his g tube, lots of gagging and vomiting. This is causing respiratory issues because he aspirates every time he vomits, so he has been above baseline oxygen for a couple weeks now. We started Carafate, and that has been a wonder drug! No more bleeding, and I'm actually getting a lot less acid out of his g tube as well. I'm just hoping once the drug is stopped he continues to do well.
He is having a new port placed on the 27th. We can't wait to have our access back. Blood draws have been a nightmare! We have labs that need to be done but we are holding out as long as possible to hopefully have our port back first!
Still fighting the school with Jax. For some reason they have been really bad with getting him what he needs and deserves! Now that we have a nurse that we trust to send Jax to school with, we are anxious to give the classroom a try. We were supposed to amend his IEP so he could start extended school year last week. Now we are nearly halfway done with extended school year and still no IEP! Don't worry, I've just emailed the director of special ed, because I am at the end of my rope with them!

Arina is her crazy, princess self! She is starting to say more and more words! Now if we can just get her to put more than one word together! She thrives in school. She actually does better with her wandering and running at school than at home. She's escaped the house a few times, and now with all the baby locks its like Fort Knox around here! But at school she no longer needs someone to hold her hand outside. She follows the line and stays with her class.
Just in the last few days we've also had some exciting potty experiences. She is pointing to her diaper, and when I plop her on the potty, she's gone three times for me! I think she's finally grasping the concept of what the potty is for!
I can't believe how big she is getting! It seems like just yesterday we were taking her out of the orphanage.
I am so blessed with my amazing babies and wonderful family and friends!!

Friday, April 4, 2014

Wow I've done it again, gone a couple week without a single blog post! 

We are just having too much fun in the sunshine year round we have here in SoCal! Man I could never give up this weather now that I've had it! 
Sunday we left Arina with one of our Disney friends, and Jax spent the afternoon at Auntie boo's. That meant some free time with the older boys, in which we hit Universal studios. It was a madhouse! I've never seen universal so busy! Busier than Disneyland! 70+ minute wait on every ride.  
We got a new pound puppy yesterday. It will be nice to have a furry companion back, and we hope to have her trained as a service dog for both littles. 
Everyone have a great week, we are still on spring break here!

Saturday, March 8, 2014

Saying goodbye is always hard!

Yesterday we had to say goodbye to our beloved Reggie! 

All the boys have had Reggie since they could remember. Mondo is the only one that had life before him. 
He was 13, a Shepard/chow mix. A pound puppy, he was amazing! No other dog will ever compare. He was gentle with everyone, but protected when he had to. He chased a burglar out of our garage one morning. 
He had not ben eating well for a couple months. I bought him softer food, knowing he is getting older. But two days ago he stopped eating completely. He had lost a lot of weight, so I took him in yesterday. His teeth looked ok, so we knew it wasn't that making him not eat. The only way to tell for sure was 600 dollars worth of testing. That would only show us what it was, not treat it. And treating a 13 year old dog for cancer or organ failure would be cruel. So we decided the best thing for him was to put him down. 
The boys were all there, and it was heartbreaking! They are making us a mold of his paw, and the boys kept his collar and tags. 
This morning it was so hard to go out back and not have him wagging his tail, greeting me at the door. 
We'll miss our friend, love you forever Reggie!!

Tuesday, March 4, 2014

How come I can never go through with it?
How many times have I said I'm done blogging?
And I always change my mind!
Maybe its because I've met so many amazing people and kidos
through my blog!
Maybe its because I know you just can't get enough of these two!

So I give in.....
we aren't going anywhere!

Saturday, February 22, 2014

Bye bye blog!

We are going to be shutting down our blog! After going back and forth for about a year now, I've decided finally its time! I originally wanted to keep it to print and use as a sort or keepsake book. But since I no longer post much, there's not much to "keep"

It will stay here long enough for me to print out the years from when we started, but I will no longer post here. If you want to keep following Jax, here is his Facebook page.

Thanks for the love and friendships for the last 5 years!

Tuesday, February 11, 2014

Isolation and special needs!

As I listen more and more to people saying that they lost friends after they had a child with special needs, or they are no longer getting phone calls to join friends for dinner or a party it made me sad! 

I also thought, well that didn't happen to me! My good friends I had in high school I still talk to through Facebook, and get together maybe once a year. But then I realized that in my neighborhood, I never really made friends with the other moms. We waved and smiled, but no more than that. I never get invited to play dates, or to go out with other adults. I didn't think that much about it because I have so many new friends that are also moms of children with special needs! 
As much as its nice to have all these new friends, it's heartbreaking to feel left out.
I imagine that having a friend your whole life and losing that friend because they can't handle, or just don't know what to say to you now, makes you feel horrible!
I would make a list of things to say or not say to a mom of a child with special needs, but I think those lists are ridiculous! We shouldn't expect our friends to know what to say, and I think that's why they are afraid to say anything! If they say something that seems horrible, or outdated, or ignorant, kindly correct them, and move on. I've had friends say they are afraid to ask questions, or make a comment for fear it will make that person angry. They shouldn't feel that way.
The only thing I do say, is don't be afraid of us or our children!
Just because instead of baby bottles on our counter, we have medical supplies..

We are still very much like you!

Just because instead of lots of toys in our child's bedroom, it's shelves and shelves of medical equipment..

Doesn't mean we don't want to have play dates with other children!

I know as a friend looking in it seems scary. But please don't turn away! Our kids are just kids, and we want for them the same things you want for your children! And more than likely, the exposure to a child with special needs will make your child a much more compassionate, understanding person!

Tuesday, January 28, 2014

Pray for Ukraine!

Ukraine is in a battle for freedom right now! And no, it's not neo nazi activists! That's the most annoying comment I hear from people who just assume!

The people of Ukraine have been peacefully protesting their president and his decisions for two months now. They want to be free! They want to be out from under Russia's big bully umbrella! Then their government started attacking them! Making up new laws like you can't have a tent in public, and other outrageous reasons to arrest and beat innocent people!  
They don't want our money, or our troops. They want us to help spread the word, and for the US to say they don't agree with what their president is doing, and urge him to step down. 
This is stuff that we could very well be facing in our own future. Scary as it seems.
 My husband and I still have friends in Ukraine that we talk to daily.  We have a friend here that is from Ukraine. Her brother and family are still there. She fears for his safety as he wants to help his people gain their freedom! 
I look at my baby girl, know that these are her relatives, and this is her home country. Luckily she has no idea what's going on, and we just hope for safety of the people, and for their president to step down and allow elections, which is what the people want! 
Please watch this video, it's 3 minute of your life. It tells the story of what is happening. It brings me to tears. Seeing places I've walked, people I've talked to! 

Just pray for Ukraine, and email the government to make a statement! How sad that our news is all about Justin beiber and his stupid mistakes! We are truly a messed up media!