A new year coming!

Ok I swear swear swear I'm going to try and post once a week! That is my New Years resolution!

Things have been quiet around here, which is a good thing in the medically fragile life! In August we switched home nursing companies and finally got a great nurse! She currently works three days a week and we love her! 

It's a good thing because in February, this Mommy is starting school! Yep, I'm finally digging in and going back to finish nursing school. Big things will be happening this year, and I feel like its the beginning of amazing things! Daddy will become the stay at home parent, and when I'm working we will finally be able to buy our dream home that will be Jax friendly! And then we hope to adopt one more girly to our home, and give Arina a sister!

 

Jax has been doing good too! We are celebrating no unplanned hospital stays in 2014! We had a few overnighters for various adjustments, but no big unplanned stays! He still has big problems with vomiting and blood in his g tube, but we don't know why and it hasn't really gotten worse. He can't have carafate, which really helps his stomach, because it clogs his g tube. If his g tube can't drain he vomits more, so it's a hard thing to juggle. Respiratory-wise he is still on higher oxygen needs than he used to be, but we're just thinking this is a new normal. Since there is no significant change in his heart function. Those lungs have taken more than a couple of nasty beatings in 9 years, and their going to be finicky! 

We hope you all had a great year, and here's to an amazing 2015!!!

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!

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!!

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!

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!!

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!
 

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.

Facebook.com/jaxsonsfight

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

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!

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!



 

 

She is her own advocate!

When you have a child with special needs, its always about advocate, advocate, advocate!

While that is a huge part of our lives, there is such thing as going overboard.

I know your thinking, no way!

But a mom of a 17 year old girl with DS in a group I'm a part of just left that group.

This is a mom that knows her stuff! After all, she's been doing this for 17 years.

She tried telling some other moms of young kids with Down syndrome that there is plenty of time to advocate, and still enjoy your child! That sometimes you have to just live life, because soon your child will also be 17.

This mom was ripped apart by these other moms! She was told she didn't advocate enough for her child.

Do you know how much your own child can advocate for themselves. How they can change peoples hearts and perceptions all on their own?

Of course that doesn't mean we don't need to advocate, but watching Arina the other night, I realized how much my 4 year old is her own little advocate.

We were at Disneyland, waiting for her beloved parade to start. Because she doesn't sit still long, she is usually walking up and down the parade route, waving and dancing, and pointing out any Disney souvenir  someone may have!

But the last couple of parades she has been doing something new!

She walks down the row of people,

and hands out hug after hug!

After hug!

I have yet to see a person turn her away, or not have a huge smile on their face after interacting with my beautiful girl!
Sometimes its fun to just let her do her thing!
And you better believe that most of those people will remember that little girl at the parade, if  Down syndrome is ever brought up with them again. Or maybe they are told their unborn baby will have Down syndrome. Hopefully they will remember her little face, and think that it may be alright!

Admiration

Love and admiration

 

 

Big, bright eyes that tell such a story of strength!

 

I could keep him snuggled in the crook of my neck forever!

 

I can never get enough of this face!

Being a sibling of a fragile child!

As you can imagine, being the sibling to a medically fragile child is not easy! 

There are many times they have to take a backseat. They have to go without seeing one parent, things they wanted to do have to be cancelled or changed because their brother is in the hospital. 

When Jax was a baby Carter was 3. It was as if I had a job. I got up in the morning and took him to grandmas house while I went up to the hospital to be with Jax. Because Jax was in and out, Carter became very clingy to me. To this day he is the one that always wants to come with me if I go out!

In the last 8 years its just become life. Something you don't even think about. For years we've been taking each boy out about once a month for one on one time. We try to do it if there is something happening they like. The air shows and military museums for Mondo. A new superhero movie for Tanner. A baseball game for Carter. 

Our whole experience in Utah made me really remember what our boys deal with! 

In St. George when Jaxson was blue and we had to call for help, the boys didn't even blink. They ran out to flag down the firetrucks like the old pros they are! As I sat in the ER with Jax, waiting for life flight to come, the kids sat in the car, watching movies for 3 long hours! It was that or chase Arina around a crowded waiting room! She quickly fell asleep in the car. They missed a week of school when we had to drive back up to Utah. Then when they drove home with daddy, they had to get themselves up and off to school alone, because daddy had already left for work!  

Christmas decorations didn't get put up this year, and many of the Christmas events we didn't attend. Luckily the boys are a bit older, and Arina doesn't understand yet, so it wasn't a big deal! But it was a big deal to me. I felt like in the last month the boys had been through a lot! So a lot more time was focused on them, and things they wanted or needed!

There are good things that come from being the sibling of a fragile child. And I think, that those far outweigh the bad. 

The boys are very self sufficient. When they have to go out in the real world, they can cook and care for themselves. Which I would have instilled in them even if Jax wasn't in our life. Because I was the same way as a child! 

They are much more compassionate people! All of the boys come to Jax at least a couple times a day and kiss him, or hold him. Or just make sure they check on him. They go out of their way to help people, and to hold doors. They can pick out a person with special needs like a needle in a haystack, and they go out of their way to talk to them. I constantly find "selfies" on my phone of Carter and Arina!

I asked all three boys separately, if they would change their life with Jax. If they wished they had more time to do what they wanted to do. And here's what every.single.boy said!

They would take away any hurt he had to endure. They would want him to be able to walk, and talk to them. None of the boys said they would change their own situations at all. Not a single one! 

Ray and I both take pride in the fact that we've concentrated a lot on making sure the boys life changes as little as possible with Jax. So I can say for a fact that it can be done. Just remember to take time once a month for each child. Even if its just popping popcorn and watching a movie. It will make a difference, I promise!