Monday, August 31, 2009

Serious stress'n

I talked to pulmonology today about Jax desating on his c-pap. The only thing she can think of is his nasal airway is so narrow that its not getting through. So she wants me to find this nasal spray for which I can't even spell the name. She is hoping it will open up his airway a little. If it works they will write a perscription for a nasal steriod. I have run around everywhere today trying to find it. I may have to run all the way up to the hospital pharmacy to find it.


I can't understand the medical world. We are able to transplant organs, help people with just half a heart, but they can't figure out how to open up the nasal airway besides taking the adnoids out. Which he can't even have done. Or that they can't figure out how to open up his SVC. With all the things they can do for the heart. Everything we need just seems unfixable. I'm having more and more of these heart palpitations, with headaches that go along with it. I'm not sure what's causing what, but they always come together. I talked with Heather for a while the other day, and she convinced me that I just need to give in and go get it checked out. I called my doc, who I've never even seen before. I know, I haven't been to a doctor besides my ob/gyn since my pediatrician. She said since I haven't been seen there yet they have to look at my info. That it could take two to three weeks to get back to me just to schedule an appointment. Oh well, with Jaxson's declining health, and the need to go clear accross the country to do a risky procedure for him, my appointment is the last thing on my mind. I know I'm losing steam though. Jax sleep is getting worse and worse, therefore my sleep is almost nothing. But I keep chugging along waiting for Boston to call with an appointment. Because I have yet to have that small voice tell me that Jaxson is done fighting, so fighting we will do.

I was excited for our Buddy walk this year. Although I don't know if we'll even be here to do it, or if Jax will be able to go, he's getting worse and worse by the day. His lungs are filling with fluid. He has coughing fits that are a joy to deal with, but we put a team together this year, and I really want to go. I'm not worrying to much about raising a bunch of money. Not that I don't want to, but I'm trying to get to Boston with Jax, so that needs money more than anything else right now. But if you want to donate, or just check out his page, click here.

This is whats going to be on the back of our t-shirts. The front will just have the team Jaxsons fight on the pocket. I can't wait to see them.

Sunday, August 30, 2009

Mommies fight with the asphault

On Saturday, while Ray and the boys were eating breakfast in the hotel, I walked out to the car to get a couple of things. I was a little panicky because I couldn't find my wallet. I was walking around the front of the car to the other side. The vallet was waving at me to tell me that the shuttle was there, and while I was looking at him, I didn't step over that piece of cement that you pull your car up to. I tripped over it, and did the greatest Hollywood, flat on my face fall ever. Luckily, no one saw me, but the valet had to have seen something, because one minute I was waving at him and the next minute I was gone. But I got a nice abraison on my leg. This picture is after we got home, the scrape is going away but it was starting to bruise more.
I'm so graceful, I know.

The boys in front of California Adventure.

Huntington beach, our last stop before heading home. I haven't been to that beach for years. It really is beautiful.

A view I could wake up to every morning.

We met up with our online friend Peanut and her mommy. We met for lunch on the pier. Jax decided to sleep most of the time.

Getting Jax feet wet.

Nothing better than sandy, beach baby feet!

Friday, August 28, 2009

More Disneyland and more c-pap frustrations

Yeah, so I'm a horrible mom. We got our c-pap machine on Tuesday and he has yet to wear it at night yet. I'm not quite sure when to put it on him. He's gotten on this horrible sleep schedule, were he doesn't go to sleep until 11 or 12 at night. I try to stay awake and wait for him to fall asleep, but I'm exhausted. He has been sleeping horribly lately, and I haven't had a good night's sleep in about 2 weeks, vacation included. So today when he fell asleep for his nap I thought it would be a good time to try putting it on and see if it wakes him up. He didn't move when I put it on. He also didn't move when I turned the flow on, although it starts slow and builds up to a peep of 8 in a half hour, thats so nice. The only thing I noticed is his sats were dropping. I thought the c-pap would make his sats the highest they've been, but he would desat, and then come back up. He actually sats lower on the c-pap. Someone said it could be getting used to using it, has anyone else noticed this the first few days of c-pap. Also I don't want to use it to much because I'm interested in what his pulmonary pressures are right now with his respitory distress. the c-pap should help that and I want to see what they are now. We have an echo next Friday. Does that sound wierd?
Finally, success on getting c-pap on the sleeping child.

Back to Disneyland. Mommy and Jax going on Dumbo.

Jax getting ready to "fly"

You can't do Disneyland without breakfast at Goofy's Kitchen.

Dancin with Goofy.
Our friend Dale. Remember last time we were here, Dale stayed with Jax for 15 min's. Kissing him and touching him. I know this person under the mask has a DS child or sibling or something. What are the chances of seeing this same person again? It was definitely Dale both times though. I would love to talk to that person but you know that will never happen.
Daddy in his bullet proof vest at his ride along with Joe.

Jax getting strapped in to go back to Disneyland.The staff was so good to him.

One of my favorite pictures. Walt and Mickey, the makers of Disney. There's just something magical about Disneyland that you don't feel at any other theme park.

Tomorrow the last of Disney and our last beach trip were we met up with another bloggy friend.

Thursday, August 27, 2009

Tanner turns 8

First an update on Boston. Our doc talked to them and they are going to call me to schedule an appointment. If they don't call in two weeks then we call them. I have a lot of concerns, but I'm not going to worry about them until I talk to one of them in person. We have to make sure we can do everything while we are there. So like if we make a clinic appointment but their surgery schedule is booked, that won't help us. We have to fit it all in on visit out there, its not going to be cheap to get there.

I'm going to split the Disneyland pics into two posts. One reason is we have 3 days of Disneyland pics. The other is it was Tanners birthday on our first day there so I'm going to do his birthday post.
Tanner, I was so excited when I had you. I got a blond haired, blue eyed baby. I never thought I would get that with my brown hair in the family. You were always such a good baby, gave great smiles, so we didn't expect the diagnosis we got when you were two.

It started with no words, so we had your hearing tested to make sure you weren't deaf. Your hearing was fine, so a speech therapist was sent to work with you. Since the autism craze was just getting started, I didn't know too much about it. Our speech therapist was the one who pointed out things. His repetitive play, he would line hot wheels up on the couch and do it over and over again. You were fascinated by your cars, would hold it in front of your face and spin the wheels for hours. You never played with other children, and although you smiled for us, you didn't like other people. No one else was allowed to hold you. when we got the diagnosis, looking back things added up. The reason why you were such a good baby. Would sit in your swing for hours.

We hit it head on, got you in for at least one preschool year at an autism school. You went in there with no speech, and came out talking our ears off. It was an amazing transformation. And although you will always be behind. Be scared of loud noises and weather. Still play by yourself, you have a great personality and are my little actor.

I loved that your birthday could be at Disneyland. It worked perfectly. Opening up a couple of presents before we left Aunt Doreens.
Your special birthday pass to Disneyland.

Opening more presents at the hotel.
I'm amazed at how my little blond, blue eyed baby is turning into such a gorgeous kid. Another heartbreaker. We love you T and Happy Birthday!!

Also on our first day at Disneyland. We were letting the kids get cooled off by some misters, when my little social butterfly, my future class president, attracted some new friends. It amazes me that not only is he good with people, but people just walk up to him and are instantly friends. And most of his friends are girls. This kid is 6 people. And I don't think he understands what he is saying but he will come home from school and say, "geez, everyone in my class wants to sit by me, how do I sit by everybody?"
These pics are the cutest thing ever. I can't wait to show him when he gets older. Look how cute these girls are!!

Don't you love it?

Wednesday, August 26, 2009

Jax new friend Mr. C pap

Jaxson got his c pap machine yesterday. I put it on him today to get it adjusted. He actually didn't seem to mind it. The nice thing is it starts out slowly and works its way to a peep of 8 in a half hour. That gives the kid time to get to sleep without it blowing to hard. We will give it a try tonight and see how everything goes. We also have an echo to schedule to see if his pulmonary pressures are up due to this respitory distress. His xray doesn't look much better today either. Tomorrow I need to call Boston and see when they can get him in. They told me to schedule the venogram, and my ped was telling them they need to see him in clinic first. He is a complicated kid and they need to know him before they go in. Know that his veins are shot. They are talking like a cath is going to be easy but all of his veins up top have clotted off. And both groins are distroyed from being the primary veins for the last year. If you remember with his surgery in June they had to do a cutdown in that left groin. This is not going to be as easy as they think.

More vacation pics too. Tuesday we went to the beach. It was kind of an overcast day, and right when we had to leave the sun started poking through. It was also a very quiet beach with not much waves. This is the foot our neighbors made.

Wednsday night Ray took Mondo and Carter to a Dodgers game. Me, Tanner and Jax stayed home. There was no way I was taking Jax, and Tanner would have been way overstimulated by the noise.

Disneyland pics coming up next.

Tuesday, August 25, 2009

More pics and Zoey pics.

I tried something new with Jax this morning. His tendergrips have been ripping his face up lately. I hope its just a faze because thats the one thing that keeps the O's on that he can't rip off. And normally they are good on his skin. But I guess a lifetime of having them on your face will cause some problems. I had seen a couple friends cut heart shapes in the tape on their kids face's. So I gave that a try. Although it looked cute, it lasted about 2 hours before he ripped them off. So we went back to tendergrips and I tried to find good places on his cheeks to put them.

Bear with me, there are a lot of pics in this post. But their good pics and the best one's are at the end. Our visit with miss Zoey.
We went to Universal Studios on Sunday. I talked Carter into going on the Jurassic Park ride. If you've ever been on it, it has an 8 story drop. Yikes. I always say that if that drop wasn't inside a building and I could see it, I would never go on it. I think he was braver than me. He had his eyes open the whole time and got a face full of water.

It never ceases to amaze me at how much attention Jax draws. We were walking along and stopped to watch a group of characters. They were dancing to music. I tried to get the boys to go dance with them. One started walking over to Carter when he noticed Jax. Before I knew it, all of the characters were hovering over Jax. Kissing him and loving him. Then one of the staff took our picture with them all. I felt kind of bad because after they saw Jax, they pretty much ignored all the other kids around. After they walked away I got some looks. But I think after all my angel has been through he deserves some lovin.

Monday was our visit with Heather and Zoey and the boys. Oh it was such fun. The boys swam, we had dinner, then we talked until way past bedtimes. It was so natural, like we've been friends for a lifetime. The boys were instant friends, and my boys talk of them often still.

Zoey and Jax getting reaquainted with each other.
Zoey getting Tanner at the pool.
Zoey just loved the boys. And the boys are smitten by her sweet face. We joked about how there were five boys running around and neither of the babies was trampled. They are just so good with Zoey and Jax and they know to be careful around them.
At one time Zoey just attacked Carter. Smothered him with her big kisses and Zoey loves.

And of course I couldn't leave without my Zoey love. Man that girl gives great hugs. She just grabs on and won't let go. I could just carry her around with me all day. There is just something about holding her. I'm sure Jax has the same effect on other people when they hold him. Its just different for me because he's mine. But they truly have a special gift.

We love the Needhams and know when we move out there they will be some of our closest friends.