A handicap accessible vehicle for Jax!

If you remember a couple weeks ago I told you about a contest where the top 3 winners get a handicap accessible vehicle. I haven't posted about it again because about a week after we entered, I found out that the person in first place had over 34,000 votes! We had just over 1,000! I knew then that there was no way would be able to catch up to that person, so I ditched the contest and started researching ways we can purchase a van for Jax.
We went to our local dealer, and they are wonderful! They are actually a DME company so they are also helping us get Jax his specialized wheelchair that will fit his multiple needs. With this wheelchair we are going to need an accessible van. More than likely his chair will not fit in the back of my van. My van cannot be converted to the kind of wheelchair van we need that will still seat all of our family. Its actually more money to do the complicated conversion that the van is worth! I was actually excited to see that there are in fact vans that are not the super big ones, but will still seat all of our kids! Here is a picture of the van we need for Jax.

In this van Jax will slide right up between the two middle seats, and two seats in the back fold down, allowing all 7 of us to ride in the car!

We are doing a bunch of fundraisers to help us buy this vehicle. I'm still working out how much it will cost. I'm going to trade my van in, and I'm still looking to see if Jax insurance or the Regional Center will help with any of the cost. These vans start at 40,000, so they are a chuck of change! Hopefully with all these together, we can buy Jax van!
One friend is donating all of her profits from jewelry sales to Jax van fund. Click here to see the catalog. Write down the item numbers for what you want to purchase, and then go here, to her facebook page and message her your order! That way it will be known that this order is for Jax van!

The other fundraiser right now is some fabulous fitness wraps! The profits from each wrap also goes to Jax van! Click here to see that fundraiser!

We have a few other fun fundraisers coming up! We are going to have an online tupperware party, loving that one! Our dear friend Cammie is also going to do a 31 fundraiser. 31 is totes and purses and other fun things you can have personalized! We are also going to be doing an auction. If you have anything you would like to donate, please email me at laceyrugg@hotmail.com.
Here is Jax donation page where you will pay for auction items and other things for fundraisers. You can also make a cash donation if you wish to just do that.
We will get Jax his van he needs! I know we can do it, with the help of all of our great friends!

Is it a cruel life?

Tanner and Carter play with these boys that live down the street. They are identical twins, and to this day I can't tell you which one is which!
Usually the kids are outside, we have a park just around the corner, or they play basketball, or just enjoy being in the California sunshine. The other day they came in the house to try one of Tanner's new videogames, and they played inside for a while. About an hour later, they were outside when I walked out with some trash. Tanner said to me, "does Jax have a cruel life?"

That question made me stop in my tracks. Whatever would make Tanner ask that question? Apparently the twins were asking why Jax has all of his tubes, and Tanner was telling them about his frequent hospital trips, etc. One of the boys said, oh he has a cruel life.

Is it cruel to be poked and prodded all the time? To have frequent surgeries and hospital stays? I'm not sure if cruel is the word I would use, but yes, its not fun.
Does Jax have a cruel life? To me that would be a big fat no! Jax doesn't understand that he can't eat good food. He doesn't understand that he should be able to walk, or even sit up. He only knows the life he lives, no different, and his smiles tell a big story.
Jax very rarely cries. I mean never! Even being poked for blood doesn't usually lead to tears. He is a very happy go lucky kind of kid. And lets face it, he doesn't have to worry about bills, or bullies, or jobs. He's got a mom and dad and siblings that kiss on him all day long. Not to mention a bunch of fans that would love to do the same.

Would I take some of the medical problems away from Jax? In a heartbeat! But I would never change who he is, he is perfect in every way. And you can look at these pictures and decide for yourself if you think Jax lives a cruel life!

Finding a great pediatrician

I never truly understood what it meant to have a good pediatrician until we moved out of state! We were very lucky that when Jax was born, we had already had this fantastic pediatrician for 7 years.

I know you have heard the problems we've had finding a doctor here in California. In a year and a half we've tried and dumped 6 docs, and talked to dozens more on the phone. Most wouldn't touch Jax with a ten foot pole. Some said I needed a doctor that worked out of a childrens hospital, because they deal with complicated kids. But I found that those doctors offices were super busy, filthy dirty, and had residents that made the appointments twice as long and not as personable.
Then I thought I'd found the perfect doctor. She was outspoken, just like our ped in Utah was, and she was very involved. I thought, finally, after a year we've found the one.

Then came the incident.

Now most would tell me I just need to chill out, or that I'm over reacting. But walk a day in my shoes with Jaxson. You would agree with me in a heartbeat!
I took a form into her office that needed her signature. The lady at the desk told me it would be 10 dollars to sign the form. I about dropped dead. I have a stack of five or six forms at home that needed to be signed for Jax to start school. Your telling me I have to pay 60 dollars to have papers signed?? Now a bunch of people have told me their doc makes them pay to sign. Thats fine if you stay with them, but I will not! I've NEVER had a doctor make me pay to sign a form. I feel like that is part of their job as a pediatrician!
When I talked to her on the phone about it is what sealed the deal that she was kicked to the curb. She claimed that she signed this paper at home, at 11 at night. To which I replied....bull crap! It takes 30 seconds to sign a form. The way she was talking to me made it clear that she was more concerned about money than the children she cares for. When she told me I could find someone else I said, I sure will, click!

Now doctors in California are different than doctors in Utah. Its just the way they do things. I've accepted that, and remembered that when looking for a pediatrician. But I work so closely with the pediatrician, that I'm an expert when it comes to what you need in a doc. I say this because most people that I talk to say they LOVE their ped, but I could walk into the office and find multiple things that would have me looking elsewhere. This is probably why my pediatrician in Utah that I had for 13 years wants me to sit down with her and write a book. I'm all for it, and we plan on getting together at some point and actually do it, if I can ever get back to Utah for a long enough period!

I have finally found the pediatrician I've been looking for the past 1 1/2 years! And you want to hear something strange? She does not have that much experience with fragile children. But I would still recommend her to any mom of a fragile child that asks for help finding a doc.
First thing, she does NOT charge to sign forms!
Second, her office staff is amazing! They answer calls quickly, and return calls usually within the hour. My prescriptions are refilled as soon as they hit her office, and messages are sent to the doc immediately.
Like I said, she has never had a complicated kid, Jax is by far her most medically fragile. But she listens and goes by what I tell her. She calls whoever she needs to call to get our answer if she doesn't know it. She has jumped in with both feet, and she gives her time and undivided attention, which is what we need.  I actually think Jax is great for her. I think he is going to further her education. He is going to make her think and he's going to make her use those skills to the best of her ability. I'm really excited to see where this relationship leads us. Hopefully it will be like our doc in Utah, who is still like a member of our family, and we continue to talk on a regular basis.
I found this doc just in time, because we have kept them super busy with paperwork and insurance crap getting things covered this past month. I can't even begin to imagine what the other ped would be saying, or how much she'd be charging me for this "extra" stuff.
She needs to remember that this paperwork is not "extra" for us. Its what we deal with on a regular basis. I don't get paid one cent for the phone calls and paperwork I do on a daily basis, and she shouldn't either!

There is one thing still missing with the doctors here.
Our ped in Utah started the Medical Home program. Its basically where the ped is involved deeper with the child and family than a regular doc. Instead of all the specialists being separate and getting conflicting info, everyone goes through her, and she is the "center" if you will, of care. They have a nurse that helps, and its like having your own team that is always available 24/7. I haven't found a medical home here. I may bring it up to our new ped. If your interested in learning about medical home, here is my old pediatrician talking about it. Ask your doc if they have that program, or know about it. If they don't, its something to research and try to get in place in your local peds office!
Man I miss this women so much!! She actually talks about Jax in one of her interviews, makes me tear up every time I watch it!

As I sit here and continue to ponder which direction to go with this blog, I hit a wall! Yesterday I was all ready to drop the blog and stick with his Facebook page. Then I remembered I started the blog for me. For a scrapbook that I can print out, and have an automatic memory book. But since starting his page, the blog has literally died! I mean I can hear the crickets chirping when I come here!

I'm wondering if I should do more blogs on issues that people want to talk about. So what do you want to talk about? What should we do to get the blog back up and get the crickets to go away?

Disneyland!

Once again it's been far too long since I posted! And again a lot is going on! For some reason Jax has a ton of air in his belly. I have to leave his tummy venting all the time now, which is just another accessory that hangs off that little body. Still waiting for his surgeon to get this J tube surgery scheduled. I call everyday, I have to be the thorn in their side to get things done! As of yesterday she said it was in the schedulers hands so I should be getting a phone call to schedule it soon. I just want it over with, because that surgery makes me nervous. Any surgery on the bowel is rough for him, and I'm worried about a long recovery and lengthy hospital stay.
We have a new worry, and we are working on getting into our new pulmo and ENT. His airway seems to be getting worse. Trach changes are horrific. His airway completely collapses when the trach is out. He turns all kinds of colors, and makes it hard to get the new one back in. It's become a two person job. I worry that he needs his airway repaired while still trached.
On to the great news. I think I've figured out the cause of Jax retching and vomiting. Yes, this mommy DOES know everything! His VNS! How in the world did I forget about that?? A huge side affect from having the VNS is coughing and vomiting. The vagus nerve is also responsible for vomiting! Even though the VNS is not working for him, it's still turned on, and it still fires every few minutes. We plan to talk to neuro and have it turned off, to see if that does indeed help! Whether or not they will take it out, I'm not sure. I will only do it if its tacked on another surgery. Too many possible surgeries coming up to add one more. I won't do that to my little man.
We are on a Disney get away right now. until Friday. Doing some things we've never done before, and a princess breakfast for our little princess! See you in a few days, we are going to relax and have some fun!!