More Make a wish

Before I get to the first of our Make a Wish trip, a wonderful thing has happened for Jaxson!
About a month ago, a dear friend (who also won one) told me about an I-pad giveaway that was going on for special needs kids. You submit your childs story, and how an I-pad can help them, and they pick finalists to receive the I-pads.
We submitted our story to Marissa's bunny, her daddy was doing the giveaway, and we found out while in Florida, that all 40 finalists were going to receive the I-pad, and Jaxson was one of those!! I can't believe it, right after his therapists are talking about starting switch's, and hopeful we can communicate with him, we receive this fantastic gift. We also get 500 dollars of software for it, so we need to talk to his therapists about whats best for him!
Marissa's bunny is also raffling off an I-pad, so go check that out now.

Ok, the first day of our trip was at Disney's Hollywood Studios, where he met Buzz and Woody.
I love this picture of Mondo. When he was little, he used to carry the Disneyland maps around everywhere. He said that it was his neighborhood, and I don't know how many pics I have of him carrying those through Disneyland, so this picture made me laugh!

Jax, with his shirt, and button, was ready to take on the parks!

I had to give him a lot of free water because it was so hot. I even dropped a few drops of water in his mouth. Luckily we avoided overheating him!

We went back to GKTW in the afternoon to swim. The boys love to swim, I was excited to try Arina in the pool, and its so hot there so its perfect to take advantage of that!
Jaxson LOVES the water, and because we were at sea level, I could take him off his oxygen long enough for him to enjoy the water without being tethered to a cord.


Arina LOVED the water as well! I have tons more cute pics of her in the water I need to post. She is a true water baby!


Swimming is hard work!

We did a character dinner, which Jax slept right through!

Back to life

We got home late last night. Now back to normal, but our normal right now kind of blows!
It consists of dropping daddy off at the airport today, to go back to California. Not knowing when he will come home again, because we can't afford to fly him home anymore. I did get in touch with an advocate with the IRS, because I'm done playing games. From what I've heard, the advocates get your paperwork moved to the front, so hopefully we have our money in the next couple weeks.
Which reminds me, has anyone actually used the advertising on their blogs, and does it even bring any money in?

Before I get to vacation pics, because I have over 700 to sort through! I'm going to start with our very special visit today.
Sarah and Joyce were in town, and we met up with them for lunch! How nice to meet them in person! I still remember when Sarah first left a comment on my blog, and I was like, who is this person. When I read her profile, I saw that she was a 19 year old with Down syndrome. That was my first real experience with an adult with DS that had their own blog!




Our trip was so much fun! It really is a pain to fly with Jaxson, and I probably won't do it again unless I have to. Getting through security wasn't as bad as I thought it would be. They didn't scrutinize any of my meds or liquids, on either flight. I don't know if that is a good or bad thing! They let us on the airplane first, but they don't give us enough time to get settled, so people are walking past us while we are trying to get all of our equipment put away.
It started off rocky. There was supposed to be someone waiting for us from GKTW, but we got off the plane so late, that they left us. We called the number, and the lady said he was in baggage claim. When we got to baggage claim, he had left us again! Hello, don't you know that most people with Make a Wish are going to have handicap kids that take time! So we had to find our way to the rental car alone. No biggy.
Give Kids the World (GKTW) is so amazing! It looks like who-ville, from the grinch. Brightly colored villas, with two bedrooms, two bathrooms, and a kitchen! An amazing pool, and ice cream anytime you want it. I think I ate ice cream more this week than in all of last year! We had frequent visits from little lizards and racoons. It was hot, but I loved working on my tan. It was a real shocker going from 80's to 40's. Brrrrr!
Like I said, I have a ton of pictures, but here's a few to start.
Our beautiful villa!


Our first day was Jax main part of his wish, to meet his beloved Buzz Lightyear at Hollywood Studios. We thought we were going to miss it, because we didn't get a regulator for our oxygen tanks, so we were stuck at the villa. We were late, but we grabbed a cast member, and they let us in the back door, stopped the line, and took us right to him.
Jax smiles were priceless!



This picture is my favorite out of the whole trip. Jax smile, have you ever seen him so alert? And his eyes looking for Buzz! Where did he go?

When you wish upon a star

"When you wish upon a star.......

Makes no difference, who you are......

Anything your heart desires, will come to you!"

We'll see you in seven days, we are leaving to give this boy the time of his life, and forget about all his pain, even if just for a little while!!

See this gorgeous boy, he is not as sweet and innocent as he looks! Oh no, not this boy!!

This boy is trying to make me as crazy as possible before I take him on a 4 hour plane ride across the country!
You know we've been having problems changing his trach because he has a lot of tissue around the hole, and the hole seems smaller. Today when I changed his trach, he did his normal panic, turn blue, because mommy can't get that trach in fast enough. But today, even after I got the trach in, his color didn't come back.
In fact, it got worse, as he was starting to lose consciousness, I grabbed my ampu-bag out of his closet. Something we've had since he was born, but fortunately have never had to use! Something you should only need in the hospital. You know, the thing that is by every childs bed in the PICU, and is in a bag in every room in the hospital, just in case. We have one in our sons closet, just in case!
I cranked the oxygen up to 10, and bagged my baby back.
I never had a chance to put his pulse ox on, I couldn't take the time to do that, so I don't know what his oxygen levels actually were. Or his heart rate. But I'm kind of glad I couldn't see that, because I'm sure they were not pretty!
Oh I'm ever so thankful for my training! Particularly my pediatric training. My ability to not panic, and know exactly what to do, was from 4 years working with very sick children.

Yesterday when I was up at the hospital getting Arina's swallow study done, I ran into an old friend I used to work with. We started talking. I was asking her how work had been, any super sick heart babies right now, etc. We joked about a little girl that was one of my first patients. I had seen her and her mom in the store the other day. She is now 7, and healthy! She was one that nurses hated having. You just never knew if this little girl was going to code on you, or you were going to be calling doctors, and running her to the PICU! Then my friend laughed at me and said, your son is the same way!
That made me think for a minute. My son was one that nurses loved, but he made them extremely uncomfortable! You just never knew what he was going to pull. Just ask daddy, or auntie Boo, both got to experience that when Jax was trached. Nurses running in his room, bagging my son back, debating on if they should push that little blue button! One nurse was my good friend, and there she was, working on my son. Ray said he'd never seen her move so fast in his life! Because usually he is talking to her about In and Out Burger, or California, because they are both from there. But not that night!

We have less than a week before we leave on our Make a Wish trip. Oh I'm so excited for Jax, but so worried at the same time. I question if its a good idea taking him. I don't want to be 30,000 feet in the air and have a crisis! My ped told me we were going to have to turn his oxygen up, because of the altitude. That makes me nervous! Not good for a momma that's a nervous flyer already!
But again, we have to live, Jaxson has to live, and he deserves the world on a silver platter.

Oh the fun we are going to have, and Jax is going to behave! If not, there is a childrens hospital close, and I hear they have Disney rooms, perfect for our Mickey lover! Jaxson and Arina are ready to go, with these to die for outfits from Sarah!

A ray of sunshine!

Monday, literally as I was hitting the publish button on my last post, Ray walked in with the mail. There was two boxes. When I saw that they were from JEllens house of fabric, I knew it was our quilt from dear Sarah. Sarah and her mom are making quilts for kids adopted through Reeces Rainbow. But I was surprised to see a box for Jax from them as well.
When I opened them, I pulled out the most beautiful quilts I've ever seen!
So beautiful, in fact, that I don't even want to use them, for fear of getting them dirty!!







These quilts are so special, knowing that one of our favorite friends made them!

It's not an answer to our problems, but it brings a ray of sunshine to my day. And reminds me that I'm truly lucky for the friends in my life! And for my little munchkins!!

Soul searching

One thing I've found, especially in the last 5 years since having Jax, is that bad will happen until you think it just can't get any worse. And then something good will come out of where you least expect it.
For example, when Jax was just a couple months old, I hadn't been able to go back to work, because he was constantly in the hospital. I was spending a lot of money on gas driving an hour back and forth to the hospital, and food while up at the hospital. We had nothing. And then when I wondered how we were going to eat for a week, I got a check for 1200 dollars in the mail from the government. They had just upped the child tax credit, and were reimbursing people for the difference. 300 dollars for 4 children!

Things have just gone downhill since Ray transferred to California. The IRS continues to hold onto our adoption tax credit. Money we were going to pay for a place for Ray to live, and airfare for him to come home on some weekends. Bills keep popping out of nowhere, and I'm desperately looking for the good to come. I was thrown over the edge Saturday when I opened a bill from the company that did our home nursing when we had it. Our insurance paid for 90 days of home nursing when Jax was trached. It had gone over that 90 days when the home nursing company called to verify hours for the next month. I mentioned that I thought it was only supposed to be for 90 days, and she told me that she had him pre-approved for the next two months. Later that day I got a phone call saying our nursing was done. That was over a year ago. This bill was for all the nursing hours over that 90 days. Close to 14,000 dollars!
You better believe I'm going to fight it! Its not my fault they messed up. I'm not sure where this lady had her pre-approval, but it wasn't from my insurance! But just because I fight it doesn't mean I'm going to win. This would be a car payment if we have to pay it ourselves. Now you see how one thing can throw the family of a medically fragile child into bankruptcy!
All the people out there that criticize us for wanting the waiver for our children. This is why. You have no idea what is not going to be covered, and what expensive service or equipment that is life saving is going to have to come out of your own pocket!!
Easter was kind of a bust. Neither me nor Ray really cared too much. Neither family invited us over for an Easter dinner, and we found ourselves running to the store for Easter baskets at 10pm on Saturday night!

I'm trying to figure out what the message is in all of this. Is He trying to tell us that moving is a bad idea? Or is He just testing us, that good things don't come without hard work and trials?
I'm not quite sure, but I'm not sure how much longer we can go on this way!

Pneumonia for the princess

Lots of respiratory crap in our house right now. Funny thing is, none of its viral, and Jax is the only one not affected, except that he still has thick, nasty junk!
I let the boys take turns sleeping in my bed when Ray is gone. When Tanner was sleeping with me, I noticed that he wheezes all night long. I took him to my ped, and his asthma and allergies are out of control! She put him on back to back doses of antibiotics for his sinuses, and steroids. Carter is a week off steroids, and wheezing like crazy as well. Ped says the cats have to go! She told me about a study where 50 % of people who have never had asthma, developed it after living with cats. With our family asthma history, the cats are just adding to the problems. So far Tanner doesn't seem too concerned about his kitties leaving, but we'll see when they actually go!

The princess has had fevers the last couple days. Nothing extremely high, and she acts fine. I actually wouldn't have even taken her in if my ped hadn't called me to tell me she was going to be out next week (I know, how am I going to leave this lady??) She wanted her checked for a UTI, something I'm not used to with boys. The only time Jax had UTI's was in the dirty hospital. She checked her from head to toe. Ears were fine, throat was fine. I mentioned that maybe she aspirated, because she did fail her swallow study miserably. And after a chest x-ray, a big, beautiful pneumonia in her lungs! Even though she is not having respiratory problems with this, we can't let her aspirate. It reminded me of a couple other times she had fevers that went away on their own. These were probably pneumonia's as well. And even in the orphanage she was in the sick room for a while with fevers. We are doing another swallow study next Wednesday, but I fear we are heading towards a g-tube. I'm not sure what we'll do, she eats so well, I hate to take that away from her, but she even aspirated on honey thick liquids last time. That doesn't leave us with a lot she can take by mouth.
Suck!!
This girl loves to eat!!


Uhh, maybe this isn't the greatest thing to eat!