What is wrong with our goverment health care system

I have had such an on going battle with health care for Aurora.  We currently have Tricare, which I am not so fond with, and again...that is another day at another time...but currently...we are having issues with social security and with medicaid.

In regards to social security: i have spent hours filling paper work out about:

• the many doctors Rory has gone to
• what each of the doctors do
• the dates and times of her appointments
• each doctor's diagnosis

It took forever.  I submitted the information to them so they could qualify her as disabled.  I was told to call for an appointment at my local office which i did only to find out all that paperwork was pointless because my husband makes more money than their minimum amount.  Basically the lady told me that because I am not a single mom or unemployed there are no benefits we can get for Aurora.

Our first surgery is over $300,000 and is we will only be down in Florida for a month...I can't even contemplate what her second, third, and possibly fourth surgery will cost because we will be in Florida for 4 months.

So i went to medicaid...the man there told me that we could proceed with the application process if I get a disability determination from Social Security....

Back on the phone with social security.....there is nothing we can do....you are not a single mom or unemployed, you make over $3,000 a month....sorry.

So what is out there for us....I am spending every waking hour and even some hours where I am pretty sure I am asleep, yet googling information, looking at avenues and alleyways for help.

Now I am in the process of starting my own Non Profit Organization for CFD/PFFD...If I can't get any help with Rory's issues I can at least strive to help other clueless moms out there that need some kind of.
guidance.

I must have left my "CFD" manual at the hospital....  :)

I am determined to find a way to pay for these surgeries...Its a shame I am terrible at gambling.

Why I am losing my mind

So i am a complete wreck.  yesterday could have been one of the worst days i have had in a long time!  I have been stressing out about how we are going to pay for these surgeries.  currently we have tricare with the military but i am really unhappy with it for several reasons.  I feel like no one there actually cares if something is wrong about Rory.  We have had consistently poor care with them, so much so that i had to fill out a waver for her to see a non-military primary care manager (who took care of her immediately and is everything i had hoped her pediatrician would be).
We found out a few things lately that have made me a bit nuts, first is Rory's first surgery, its in September which is fine, but its going to be around 9 hours and around $300,000. I honestly, can’t even think about that much money- and so we are already talking with tricare on how to handle it... of course now tricare doesn't’ want to send us to  her doctor in Florida anymore.  This doctor we go has created the surgery for her, he is the best doctor in the world to go to and she IS going to him one way or another.  I had to fight them to send us to her doctor with her first tricare orthopedist, just because its all about money to them and less about caring for patients.  So I'm going to have to fight again- its just so upsetting to me- because it took so long for me to fight and write letters and get second opinions, and now i have to do it all over with her new orthopedist.  Its just heartbreaking to realize that people really don’t care, i have even explained to them that if anything goes wrong with any surgeries or anything the only way to fix it is amputation but that means nothing to them.  I just can't believe they don't want to send her to Dr. Paley because of costs.  
So...one of our options is to re-enlist for the military.  This is of course the worst option for me.  I have had May 17, 2013 in my head as a a day for celebration knowing that I could actually move closer to my family and get my own home, a garden, a tree house for Rory,  and be able to work on my house.  I 100% want out of the military but obviously if it is what we are going to have do for Rory then its what I'm going to do.  Jon hasn’t been deployed yet..so if we do rejoin he is going to be deployed.  He knows it too, it is inevitable that he can go along and not be deployed.  It is fear of mine to be alone with Rory because i am going to need Jon or my mom here to help.  I keep thinking its going to be like after Rory was born how we got in the car and were like," ok...now what."  I'm not sure Jon realizes how much I am going to need him and my family around emotionally during all this.

 So i have been looking at ways for us to go around it- I have been up almost all night going online and calling people during her naps to see if there is some kind of social security, medicaid, or program to help with the upcoming bills.  I just feel so helpless because a lot of companies base it on income and Jon makes enough to support us now.  I really hate not knowing what is going to happen and want to find the best possible solution for Rory.  I feel like I'm failing at this because i have no idea even where to start. 
I have called the hospital but they seem to think I'm speaking another language.  I have tried social security and other programs but they are all or people who make hardly any money.  Jon makes fine money to support us now- however we have 3 and possibly 4 surgeries ahead of us and are really going to need help.  
I was literally crying on the floor during Rory's nap when the door bell rang.  It was a package from 6pm and in it was adorable boots from my sister Lauren.  it made my day...i stopped crying for a while to try on the boots.... I have the best family ever!
All of this stress has caused me to eat...guess who is feeling sad and fat lately...blah

I'm still calling daily to try to get my phone because i have lost all my contacts and everything!  We also got Rory's shoes done- i think we can pick them up today or tomorrow- they are so cute, green adidas with pink stripes!