Some Sunday fun

Sunday's are days we try to do something fun with the boys. We have season passes to a recreation park that expire in a couple of months so we thought we would get some use out of it and go swimming.
Its still a little to cold to get Jax in the water, the water parks in Utah seem to take forever to warm up, the water was freezing, so I didn't even put Jax in his sexy swimsuit (next time I'll be sure to take pics of him in it for you). So he just chilled on a towel on the grass.

Me and him just watched his big brothers play.

Tonight we pulled out this bike seat that we can put Jax in when we go for bike rides. We bought it on clearance at the end of the summer last year so its just getting out of the box today.

Uh, how does this thing work for a baby that can't sit up?

Man, this ain't comfy mom. Looks like I'm going to have to rig it, like everything else for him.


See, it is a good thing we kept the baby seat handy.

Ready to go mom. I tried it out around the block. Oh man, I am so out of shape. I really want to lose weight before we get too far into summer. Stress does wierd things to my body. The first year of Jax life when he was in the hospital months at a time, I got super skinny. My friends even were asking me if I was ok because I lost so much so fast. Now stress makes me munch. I'm really trying to stop, my body doesn't help at all with the self esteem issues. We need to get Tanner a new bike, get a bike rack for our car, and we are going bike riding whenever we can. I am bound to lose weight. Its also hard to have energy to do athletic stuff when your running 24/7 with 4 boys, one autistic son and one medically needy child.

Oh I'm tired just thinking about it, goodnight all.

Oh wait, to all our Utah friends (or anyone else that wants to come) I need you to send me a message saying what weekends you can't do a BBQ, we want to plan it on a Saturday that everyone can come. So let me know when you won't be available.

Just playin some ball

Today was a beautiful day for a baseball game. Carter played a game last night that they won, but it seems when they have back to back games they are just pooped on the second game. This is pee wee's still, after all, and the kids are young, Carters only 6, even though he acts like he's 13. He was definitly tired, but he plays a lot of positions that keep him moving. Last night he had an incredible play at short stop that got an out that helped win the game.

If you don't want to hear some serious mommy bragging then please look away now.

In this pic he is catching. Look at his perfect form at 6.


Some serious contemplating about strategy.Again, perfect batting form. If you'll notice, his strike zone is almost non existent because he is so small, needless to say he gets walked a lot.....

Or hit with the ball, he was hit twice in this game alone.

After the game we had a BBQ at the fields with the team. Even though they were obviously tired during the game, when we got to the playground they had boundless energy. Go figure.

It only takes a pretty lady to lull this boy to sleep when he's long overdue for a nap.

Napnanny

Do you know how a baby sleeps that is trying to keep his airway open without c-pap? Like this.

This is how I find Jax every morning. We turn his O's up to 1 liter at night instead of using c-pap. My pulmo said that babies tend to fight the c-pap because they don't understand it is helping them, so they don't sleep anyway. I've had a couple of friends fight with it for a while and opt for upping the O's. After we turned him up he definitly sleeps better, but he still tilts his head back.

Gavin's mommy told me about the Nap Nanny. It's for kids with reflux and airway issue's that have to sleep up. It sits at a 30 degree angle. We put phone books under Jax mattress but it doesn't help, so we ordered us a Nap Nanny. Plus with the headaches from the SVC syndrome, he needs to be more upright to sleep good.

Its supposed to arrive June 4, and we are very excited to try it out. It was 157.00 with the shipping, I don't think thats bad at all. So we'll let you know how we like it.

A little good news

Ok, we'll start with the bad news first. Still no word from Boston, I'm losing my mind. They haven't even recieved his info yet because they haven't sent me the form to fill out. Come on people, this kid is getting puffier by the day, pretty soon he's going to go into full blown heart failure. Sheesh

Anyway, my case manager from my insurance company called to ask if I had heard anything yet. She will be the one getting everything pre-approved through insurance. She said the good thing is we are not her first kid going to Boston, she just finished paperwork for another kid, so she has all the wrinkles out. I guess because of the loss of our great cardiothoracic surgeon (who was head of the department) a lot of people are going out of state. I think if he'd have been here when they met about Jax that he would have done the surgery. He does all the difficult kids, so now there is no one to do the difficult cases. Anyway, she said that she had no problem getting this kid approved to go and just pay the same as if he were having it here. Which for us means nothing, because we met our 1,000 out of pocket max in January so everythings covered 100% wahoo...

And another thing, she asked why Jax isn't on Medicaid as a secondary insurance. He did have it but I canceled it after our settlement because we actually had to pay them back what they paid in from our settlement. So I figured he couldn't get it anymore. Well he can, down syndrome is an automatic qualifier for Medicaid. You know what that means? When you go out of state for treatment, medicaid will give you some money for transportation and even a food allowance. That will help so much with the cost of going out there. Boston is on the other side of the country from us, a long, expensive place to go.

So I'm filling out the paperwork to get him back on medicaid. Now we just need to light the fire under Bostons butt to get things moving.

A big dose of reality

First things first, look at this cute little munchkin. He's the latest blankie reciever.

Jaxson's new legs came yesterday. Yes new legs. He has leg straightners that he wears with his dafo feet, to help him stand up. He has his stander but sometimes you just don't have the time to get it out and do all that crap. He needs to bear weight on his legs at least once a day to prevent his hips from getting loose.

Uh, ya I never forget to do it every day either,

Aghm

Anyways, these are his dafo's...

and these are new legs. Cute little sea creatures. And I can't show you how he stands in them because I'm by myself and have yet to master the camera and hold him. Those extra arms haven't arrived yet.

I've gotten a big reality check since buying Jax big boy carseat. The reality of life with a handicap child. I need the handicap parking spot more than ever now. I can't carry him myself so if I want to run in a store I have to pull out the stroller and transfer everything into it. (We have yet to receive our new stroller)

You know when Jax was born I never thought I would have a wheelchair bound, total need child. I never imagined when he was born the care he would need. I knew he was down syndrome, and I knew he had heart defects, but normally one heart surgery, and some therapies because he would be a little behind is what was said most downs kids need. Oh and feeding issues too.

His ped and I were just joking the other day about when people ask what he has we just say everything, you name it, he has it. Brain, heart, lungs, bowels, blood, muscles. Sheesh, give the kid a break once and a while.

And I'm worried about how we are going to do Boston when the time comes. I hate to fly, so I don't know if I could do it alone. And there's no way I could take Jax by myself. But I don't think daddy could stay the whole time. I mean open heart for Jax means weeks in the hospital. But flying daddy out with us, home, and back out again to get us will be more than just a pretty penny. Needless to say the stress level is a little high right now.

Happy Tuesday

Yesterday the rain stopped and ended up being a beautiful day. We had a bunch of family over for a BBQ. We love to have people over, but there is so much I want to do to my backyard, its making me crazy. Whoever lived in the house before us had the brilliant idea to put a border around the whole backyard, so either they love to weed, or they just didn't care. Now we are trying to kill it so we can rip it all out.

Jax cousin Todd holding him.

Chilling in his chair, its nice to be outside.

Daddy and his sister cooking.

The kids having fun on the tramp.

Carter is one strong boy.

I'm hoping today I can find out more from Boston or Colorado, I also need to call the surgeons office because they never called on Friday to set up a new surgery date. The craziness of the week has begun.

Just in, surery date June 16th for cecostomy placement.

Rainy Sunday

We were going to take the boys to the zoo today, but we woke up to dark clouds and rain. As I am typing this its pouring rain and Tanner is in the corner with his hands over his ears crying.
Aahh, life with an autistic child. Thunder scares the #*$# out of him.
Since we couldn't go to the zoo, we went to see the night at the museum 2. We are supposed to go see it next Saturday with Hope Kids but Carter has a game so we will have to miss it.
It was very cute, I highly recomend it for your viewing pleasure.

At the request of some of our "viewers", here is a video of Jax telling us some great stories, and a little oxygen pulling as well. He is super puffy today, and that has made him quite cranky. Daddy had to take him out of the movie because he was fussing. I think thats the first time we've had to do that with him, he is such an easy going baby. I really hope Boston or Colorado or anyone would hurry up. We need to get this taken care of, he is getting puffier every day.

The plan for tonight is to make chocolate chip cookies and watch Mall Cop. Its time to laugh at senseless humor.

Jaxson's new ride

This is sweet Arabella. She is super sick still in the hospital. but look how beautiful she looks with her butterflies. She reminds me so much of Jax, although we were able to escape a trach (barely) I so know how her mommy feels having the stupid vent for so long and catching infection after infection. Go read about her here.

We've been looking for a new carseat for Jax, today we went to Babies r us and found a perfect one for him. It reclines pretty far back, which he needs because he can't sit up. But I think I'm still going to put a roll under it, he still sits up a little higher than he should. But he still has to be rear facing, and this is the only one that fully surounded him, and had extra cushions for his sides so he doesn't slouch down. My 3 year old finally graduated from an infant carrier to a big boy seat, Yahh. Well maybe, the infant carrier is going in the back of the car so I can still take him to the store by myself, he can't sit in the cart so what do I do with him. Thats why we've held on to the infant carrier for so long, aside that he still fit in it. I can't carry him everywhere. We'll see how it goes.

Oh ya, I'm a stud

Ok, now I wanted to go to the Childrens Place to get some shoes for Jax. They have the soft baby shoes, his shoes from last year, these little boat shoes, still fit, but I wanted to see what they had for this summer.
So I bought him these little tan ones, there so cute.


So then we go to Babies r us for the car seat, and I should have known better, but I wandered into the baby clothes. Um and I went a little crazy.

Seriously, the kid has more shoes than me now, and definitly more clothes. I had to buy him this little rocker outfit and the shoes to match. Isn't he a little stud?

Clothes sizes now for my 3 year old. Shirts we've finally graduated to a 24 month. Shorts 12 month, and shoes, a whopping 6 to 12 months. Yeah, he has itty bitty piggies. The better to munch on though.

One surgery scheduled, one to go.

First off, heres the latest babe. You know the drill, check her out here.


I met with Jax surgeon today. He was a little concerned about doing a cecostomy because he thinks that he won't pass stuff even with it. He said it might be like putting a flush in a floppy balloon. But there is nothing else to do and I can't keep giving suppositories daily. There is a simple surgery to try.
The first one is were they take the appendix and bring it to the surface and make a stoma, through that you can put suppositories and flushes. This is a bigger surgery. It would be a big scar. The one he wants to try is laproscopic, he uses a radiologists help, he pulls the bowell to the side of the abdomen, and the radiologist will "spear" it and insert a button similar to a g-tube. The reason for this one is if it doesn't work all you have to do is pull it out. Here is a picture of the tube. It is so low that it is almost flush with the body.
Here is a pic of what it looks like inside. I guess there is no balloon, but look how flat is sits against the abdomen.

We originally scheduled for June 5th. But that day we have tickets to the air show with Hope Kids. Mondo is dying to go to that. He loves everything military. Plus his birthday is that weekend. I cannot do that to him. He always gets the short end of the stick when Jax is in the hospital, and it always seems that something happens to Jax when we were supposed to do something with him. So I told her sorry but it would have to be another day. So tommorrow she will call me with a date. He will stay in the hospital for a couple of days, depending on how well he extubates. With his nissen he extubated in 4 hours so I think he'll do well. Now if we could only get Boston to call...

Want to see my view.

So many people commented on my view of the mountains from my last post, so I thought I would go take a couple of pics for you. I never think about the mountains because they've always been in my backyard, but when you stop and look, they really are beautiful. This is looking East.

This is the West side, the mountains aren't as big, but we are also on the bench of them so we are up a little higher looking East.

I have to repost this comment. Stephanie said this when I posted about a rude downs comment. I thought it was so beautiful and perfect I had to let you all see.

"I think the reason that people with down's are so easily targeted is because of who they are..

They are innocent...

They are kind...

They do not have the capacity to condemn...

Most of all they don't understand hatred, it's not a part of their make up. So many people believe that the extra chromosome means that something is wrong with them, but after raising a child with down's it's easy to see that the extra chromosome isn't wrong. It gives them something that I only wish more people had, an unlimited, uninhibited ability to love without fear."

That said, here's a couple of pics of my special little munchkin who still won't leave "the hose in the nose"

And I have to say I have a couple of girls that work in the lab at my peds office that help me with the blankies. They love it, and they are so funny when I bring blankies in for them to do. Thanks to them for their help.

So go make a donation, request a blankie, or just read the stories of the courageous kids that have already recieved their blankie.

Cute kids and grocery frustrations

Look at these cute kidos. They just got their blankies. Ashlea lives in Australia, yeah, we sent a blankie to Australia, cool huh. Go check out their stories here.

Isn't this the sweetest pic ever, his story is here too. He wasn't feeling good when his blankie came so he cuddled right up with it.

Ok so I was walking through the grocery store today minding my own business. I saw this group of women, they were in the baby section and one of them had a baby with her. They didn't see me at all, I just overheard one of them say down sydrome and freaks of the world in the same sentence. Now I didn't hear the whole story, so I'm probably making ussumptions, but I had to walk away quickly so I didn't say something. My blood was boiling. I wanted to walk up to them and point to Jax and say, does he look like a freak of the world? If he does than your baby does because there is no difference in the two, they are both beautiful babies. I'm mean theses women didn't look like the brightest people, kind of dirty, but I'm glad I didn't say anything. I was the better person and just walked away. I just don't understand why even nowdays people don't understand down syndrome. What about all the other people, its always the downs people that are stereotyped? What is the deal with that. Oh well, we can only try to spread the word and show people our beautiful kids and how "normal" they really are.

I think summers here!

I think summer is finally here. How do I know? This is what I found in my computer room yesterday.

And this is what I found in my front yard.

Carter wowing the girls as always.

I had Jax almost laughing yesterday too. He had the biggest smile I've seen since his injury. If your new to our blog you know smiling is a big deal around here. Of course as soon as daddy grabbed the camera he didn't give as good of smiles, but still better than before.

Oh, and still no word yet on where we will be traveling for surgery. But I called my case manager for my insurance and gave her a heads up on it because we will have to go through the preapprovel process. Fun stuff.