Thursday, July 7, 2011

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!!!!

14 comments:

Heather said...

I used to get scared of what would happen in the future and how things would change as my son, Davin, got older. (Okay, I still do sometimes;-) I just try not to think about it (even when school tries to make me think about it!) too far ahead. I know that I will be given grace as I need it and looking back over 18 years, I am amazed how we have adjusted and tweaked things to ensure Davin is with us. Things do change, but you will find a way. You love that boy and you are doing a great job being his Mom:-)

Kim Rees said...

Oh Lacey I feel for you...sorry there were a some bumps in the road this trip. I continue to pray that God gives you strength, peace, and guidance in what lies ahead. Jaxson is such an amazing boy and so very lucky that God chose you to be his Mommy! (((HUGS)))

suelmayer said...

Hugs, prayers and more hugs. That all I've got!!!

Colleen said...

That Lovenox is super expensive. I had to take it when I was pregnant and insurance didn't pay for hardly any of it. I know what you mean about the future. I think it's hard now getting the boy places with the equipment, but at least I can still lift him. I just have to think about the here and now or I'll make myself crazy.

Zoey's mom said...

Sorry we never got to spend time together this trip.Nest time and by next time I am hoping it is for good!

Love to you all,great photos my friend.

Chromosomally Enhanced said...

this is just tough...but you rock on pulling through!! glad you were able to have a nice semi-vacation!! and I do not think teens do smile for photos!! the princess is to cute! smiles

Becca said...

My heart hurts for you, Lacey. I'm so sorry you're going to have to leave your beloved ped, and I'm so sorry this trip has exposed so many current and future difficulties. Sending a big hug for you and for Jax. Hope your move comes soon!!

Btw, you're the 2nd person to allude to issues in the blogosphere - I'm completely clueless (maybe clueless is a good thing!), and anxiously waiting to hear more...

Our Family said...

i'm waiting for the blog gossip!

The VW's said...

Love all the cute pictures! Sorry you have had so many issues to deal with!

I am right there with you about thinking of the future! I get so anxious when I think about how we'll be able to do certain things when Gavin gets bigger! I suppose we will just ease into it, and we will be able to handle it all when it comes at us one day at a time.....just like we've accepted and learned naturally how to do everything the last 5 years! But, thinking of carrying Gavin and changing him.....especially when we are out, that is an overwhelming thought!

One blessing that I have tried to focus on is the fact that Gavin and Jax don't grow very quickly! And, the fact that they have Ds pretty much assures us that they will be shorter in stature.....try to focus on these facts! Imagine if our boys grew as fast as our other children?! This is a huge blessing!

Hope you make it back to Utah safely and all goes well! Hugs!!!

Heather said...

Thinking of you. Hope you get settled in soon. So glad you can all be together again. I'm amazed at everything you do , Lacey! I think I would be a hermit if I was in your shoes! What an inspiration you are.

Anonymous said...

As another mom told me "we get stronger as our kids grow". I am clinging to that thought as I too wonder how we are going to do certain things as our girl gets bigger. I also agree with us easing in as another person posted. We are super active and have maintained that level with our girl, so somehow it will work.

Dannette (mom who stumbled across your blog and love it)

Melissa said...

I know that Jax's health bring challenges that most of us don't understand, but I'm glad you are able to go on trips now. Hopefully this move will be good for everyone!

ANewKindOfPerfect said...

I assume you are talking about the iPad issue. I hope you guys get them eventually!!

As for the future with a big kid in a wheelchair, it scares the crap out of me too.

Jennifer said...

Well, I am one of those who reads your blog and never comments. I'm a financial planner, mom, and have rental houses...and have moved a few times in the last few years. I would suggest you price the house to sell and be done with it. We have several rental properties and it's a huge headache. You would have to use a property management company if you live that far away, so that would cost you 10% of the rent, and then other fees on top of that. Just my opinion. We considered the same thing when we moved last time with the bad housing market, but there is a price on peace of mind and not having to stress about people not taking care of your house. Most likely you will spend a lot fixing things, replacing carpet, painting, etc to get it ready to sell once the renters move out. It's just not worth the headache. You have enough on your plate! I would also think about renting in CA for a while until you know so you are not having to sell (and maybe lose money) a few years down the road. Good luck.