Reality of a fragile child!

Man we've been in Cali for a week and a half, and barely taken 50 pictures! Thats so not like us, we are the kings of pictures. Even at dinner with friends, the camera sat in the car.

Its been an interesting trip to say the least. I've had a major realization while here. A realization of life with a fragile child.

Now we've had Jax for 5 years, you'd think we'd have figured it all out. But I'm telling you, it hit me smack in the face big time this week.

First thing, in our hasty depart from Utah, I forgot to grab Jax lovenox out of the fridge. The one med he can't go without! I called my ped at home when we got here, and she gladly called a perscription to the local pharmacy. Turns out local pharmacies don't have childrens doses of lovenox. Of course! So my ped called it into CHOC, the closest childrens hospital. When I went to pick it up, he'd already missed 3 doses. If he doesn't get his lovenox, his blood clots like crazy! Of course the outpatient pharmacy does not take my out of state insurance, and this lovenox is 250.00!!!

Now, what I should have done is walked out the door right then, and walked into the ER, because inpatient has to take all insurances. But I did what most moms do... I panicked! He has to have this med, and he has to have it now! So I paid 250.00, and then sat in my car and cried!

At Disneyland, as I was holding Jax and getting into the boat on Pirates of the Caribean, I slipped on the wet boat, and fell on my butt! With Jax and his oxygen in my hands! Luckily I was almost sitting anyway, so I didn't fall far. And I held on to Jax tight, so I didn't drop him, but I have a nice bruise on my behind, and I'm super sore. So then I was thinking....what happens when Jax gets too big to put on our laps for rides? I can't sit him next to me and hold him up, because he has no head control along with his lack of trunk control. Does Disneyland become something that we can't enjoy with him anymore? That would make us all crazy, since its a big thing we do as a family!

When I called the California company we use to get oxygen tanks while here, they informed me that my insurance wouldn't pay for the tanks, because we'd already taken a trip this year. So this must be another new change to my insurance, because usually we get two trips, and we've never been denied tanks before. So I shelled out another 75 bucks for oxygen tanks I had to have.

I guess the good thing is, I'm feeling more like this move is something we need to do. My insurance is getting pickier and pickier, and paying for less stuff. Here in Cali he will finally get the waiver he deserves, and we'll get some help with our million dollar child. Along with the new specialists I can't wait to take Jax too. The only reason I don't want to leave is my ped. It makes my heart hurt just to think about leaving her. We've been to hell and back together, and we are super close!

Lastly, the 4th of July. We went to our cousins house. His back yard goes up a steep hill, where at the top, you can see all of Simi Valley. So beautiful! Every year everyone hikes up the hill to watch the fireworks. I lugged Jax, and his oxygen tank, up that steep hill. My cousin walked behind me, just in case I slipped with him. But when he gets older, there's no way we'll get him up that hill! Even getting him in that back yard, with a big pool, in a wheelchair, will be difficult. Its reality of Jax getting older, and becoming a true "wheelchair" family that scares the crap out of me!

Don't get me wrong, I don't care about what other people think of the wheelchair...its all the things we won't be able to do. Oh, its giving me a headache again... time for some pictures!

Pilots Tanner and Mondo!

The Little Mermaid ride. Soo cute!!

Do teenagers ever smile for the camera??

Silly princess!

Ooohh my Carter!

My sweet Tanner!

Other interesting stuff going on in our blog world. Im not going to get into it quite yet, but let me tell you...its nasty stuff!!!!