Tuesday, August 26, 2014

Back to school

I promise I'm going to try and keep the blog updated at least once a week! 
But since I was here last we have moved, carter started on a travel ball baseball team, and the kids have started school! 

Travel ball is a competitive baseball team. That also means its a lot of work and commitment! Carter and daddy are both having a great time with it though! 

School is insane because I now have 4 kids in 4 different schools that all start around the same time! I have to get the three older boys to school and back home in time for Arinas bus to come at 7:18. It's absolutely crazy! Jax hasn't started school yet because its a lot more work to get him ready. He will go two days a week for a half day. The good thing is he will go to the same school as Arina and they will ride the bus together. we switched nursing companies and have a new nurse that has worked a few shifts now. We really like her, and she will go to school with Jax!

Because of the crazy school schedule I came up with a way to get lunches ready quick. I have a cold and pantry bucket, with multiple lunch items. I have the boys grab a few things out of each bucket, and lunch is done! I just don't have time to make their lunches and get everyone else ready to go, now that Arina goes in the morning as well.
It's worked out really great so far!

Overall we've been busy, but busy is how we like it! We're coming up to Arinas 5th birthday next month! We can hardly believe she's been home 4 years! Sometimes it feels like yesterday and other times it feels like I gave birth to her myself! She is now potty trained. It took a whole two weeks after she showed me she was totally ready! It was so fun to send her back to school in undies. She is such an amazing little princess!
Just loving life with my amazing family and friends!

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!