Wednesday, August 29, 2012

Looks like my little blankie fundraiser was a flop! Oh well, I'll keep on making my blankies because there is nothing better than a smile on a childs face when all they know is constant pain!

We are finding that Disneyland has more than just a few special DS friends. We met Jay a while ago, and last weekend we met Jeremiah. Both have been coming to Disney for years and are well known by the staff. Disney seems to have a special place in their hearts for our children. Jax and Arina are already starting to be recognized by the staff. Arina is especially in love with the parade. She loves the few minutes before the parade starts when she's allowed freedom from the stroller to run around while everyone else is behind a rope!

Chasing brother makes the time go faster.

Here they come, here they come, her favorite drummer boys!

Princess Tiana found her Arina,

Along with her favorite princess of all, Ariel!!

Every character gets a hug.

Maybe one day we can just let Arina walk in the parade with them!

Sunday, August 26, 2012

Blankie bonanza!

In one week we will be back in Utah! I'm so excited, we haven't been home since last November when we picked up our stuff! That is a long time to be away from the place you lived for over 30 years!

The blankie's are taking off like crazy. I have 8 blankie's in adoption auctions right now, and one little boy should have just received his Spider Man blankie! The blankie blog is still a mess, as I'm still trying to hunt someone down that can fix it. But if you hover your mouse over the box on top on the right side, you will see that it is the blankie request form. This is what you fill out to request a blankie for needy child.
In Utah, we have this small, family owned fabric store. They have material that I never see anywhere else. They also have a huge supply of the thread I like to use to crochet with. Its bright and fun, and I can never find it anywhere else. I did just find some online, but then of course you have to pay shipping. While in Utah, I'd like to go to the Fabric center and stock up on supplies. Hopefully I can find a small store here in California, but so far its been a bust!
So you'll notice I put a chipin up on the sidebar. I am putting it up only for a week. I thought now would be a good time to fundraise, so that when I go to Utah next week, I'll have the money all at one time to stock up on supplies I can't find here. Please don't feel like you have to donate. If you would like to donate to our blankie fund, we would really appreciate your help!!

Also, we'd like to thank reader Sue! She sent us enough fabric to make 4 blankies, that was a huge help, thank you so much Sue!!

Tuesday, August 21, 2012

A picture is worth a thousand words!

A picture is worth a thousand words, and that's why I posted a bunch today!

This pretty much sums up our weekend in San Diego,

A whole lot of relaxing!

A whole lot of beauty!

And a whole lot of this!!

I'm really hoping the last two weeks of August are better than the first two! I'm feeling refreshed after our weekend, and super grateful as well! Grateful that Jax misplaced GJ tube is still working. I didn't want it replaced at UCLA, where his GI is, because they wanted to sedate him, and wouldn't do it any other way. I called Childrens hospital Los Angeles, and they won't make me sedate him. In fact, they agree with me that anesthesia is always a risk, especially for a fragile child!
The problem has been getting the order sent to CHLA. They finally got it Friday, but because its a different hospital, they need their paperwork filled out. I'm still waiting for that to get filled out by his doc and sent back. It magically seems to have unkinked itself, because I'm no longer getting resistance when pushing meds. It hasn't pushed back to his stomach yet, and he is still tolerating feeds ok. With kids starting school this week, I just don't have time for an admission to get a tube change. I just pray the tube continues to work until we can get it changed at CHLA!

Now, back to my beautiful babies!!

Wednesday, August 15, 2012

Video's of a princess

I find it ironic that on the very last day of July, I posted that I got my new sewing machine up, and then Aug 1st was the start of what's been the month of hell! Its ironic because crocheting my blankets has always been a big stress reliever, and I got that baby up just in time!!

I feel like I've done nothing but scream at people all month long! I'm not going to go into the boring details, so here's the rundown. An ER trip with Jax. A tube that needs to be replaced, and an IR department that thinks he needs anesthesia for a 5 minute tube change. When I finally got them to just have them on standby, they still want me there for a two hour pre-op! I finally called his other childrens hospital, that agrees that he doesn't need sedation, so we are going there! A CT with contrast, that they also think he needs anesthesia for. A son that has now missed a week of high school because they won't enroll him without his old, no longer needed IEP. A 20,000 nursing bill that I am STILL fighting! I've contacted the Utah state insurance board, and they are helping me get this taken care of! A lifesaving med that Jax has now been a month without, because insurance continues to deny coverage.
Needless to say, I'm ready for August to be over! This weekend, we are heading to San Diego to swim, swim, swim! I am leaving all things medical behind, and I'm out of here!

We'll leave it to the princess to bring a smile to our face's.
First is her showing off her signs. That is, all the signs that she can do in the five minutes she'll sit still! She actually has many more, thanks to her much used Signing Time!

Tuesday, August 14, 2012

bad blogger (slap!)

Man I've been a bad blogger lately! Maybe because I'm feeling like August so far is not going to be my month. So while I'm working on putting my post together, just watch this video, its super sweet!
Like I said before, A little Gaga is always a good time!!

Wednesday, August 8, 2012

Fashion statements

Our princess is really working on fashion.

Unfortunetly when all you have is big brothers in the house, finding fashionable clothes can be rough!

She pulled together what she could

Please don't tell her this is not the fashion statement for 2012,
cause she thinks she's ready for the catwalk!

Sunday, August 5, 2012

Living "normal"

We've been struggling the last couple weeks with Jaxson. He's fine, he's not in the hospital, and he's not sick.

Its the other struggle. The struggle with no matter how hard we try, we will never live a normal life with him.
Every once and a while it just hits a little harder, and you get in that funk that you have to break yourself out of. A couple of weeks ago we were at Universal studios. We had just gotten there, and got on the Studio Tour. Its a 45 minute ride through the backlot, with some cool special effects demonstrations. You can't take an oxygen tank on that ride because of the fire effects. We took him off his oxygen, because he's been doing so well anyway, and he's been on the ride before with no oxygen, and off we went. Ray was holding him, and it was a hot day, and suddenly I noticed that Jax was awfully white. I kept my eye on him as he got more lethargic, and more gray by the minute. I took him from Ray, layed him on my lap and took all of his clothes off. We were sitting in the front, so I could have easily grabbed the driver and told him we needed help. But I wasn't quite panicked yet, I knew he was breathing, and the ride was almost over, so I kept a close eye on him and waited. When the ride was over I put his oxygen back on and put him in front of a misted fan. Soon his color came back and he was good to go. But man, that could have been bad, and it could have been quite the drama had I made the driver stop. I'm talking the paramedics coming out to the ride in the middle of the backlot, with about 100 other people on the tram watching. It just proved to me that oxygen will always come with us, it will never, in Jax life, get to stay home.

His heartrate has been higher as well, so I'm wondering if we shouldn't be taking his oxygen off as much as we have. Like his ped said, even though his sats stay ok, its not just about oxygenation, its about circulation among other things. He has cardiology in September, so we'll see what she says.

I'm also in a huge battle with Jax old nursing company. I'm currently fighting a 20,000 nursing bill. Some of it should have been covered by my insurance, and the rest is their fault. My contact there kept telling me he was pre approved, even though he'd gone over his 90 day limit. Now its gone to collections, and the you know how nice they are on the phone. The guy tells me he has a son with medical problems, to which I told him he was lying. Because if he dealt with this every day, I guarantee he wouldn't be in the business of calling people who owed medical bills! I just didn't know where to go next with it, because I keep telling them I'm not paying it, lets take it to court! But luckily I have some friends that told me to call my state insurance board, and they should help me take care of it.

Yesterday we tried going to the beach, we didn't leave early enough, and the beach was packed! There was no parking close, and with Jax, we can't walk a long way, because we have to leave the stroller in the car. It is impossible to push a stroller on the sand, and its impossible to carry a dead weight 6 year old with all of his crap from far away. So after wasting a few hours driving around looking for a beach, we finally gave up and went home.

If he's not pulling his feeding extensions off and making his stomach bleed and leak formula all over, he's vomiting green bile all over his own face, and probably down into his lungs, because he lays on his back. I would like to know why we aren't fixing his nissen. Why even on two meds his stomach acid is so strong it burns paper, and why he continues to retch and vomit.

After I finish this post of my frustrations, I'm going to leave it behind. I'm going to go put Jax in the tub, so he'll smell delicious again. Then we are starting a new week fresh, and ready to battle whatever comes our way!