Other Foundations

When I first decided on my own that we would have Haleigh's nevus removed, I was really clueless on what we would go through to have it done. I have written before about all my searches and the different doctors we went through on our way. And I also wept about other foundations that do most of the same things that Surgical Gifts does, but not exactly fit for us.

Last week and then again this week I was given the name of another foundation that helps kids get plastic surgery, tonight I took a better look at it and while its a good foundation they still wouldn't help Haleigh if we even applied. I know your thinking what? Why not Haleigh? And the simple fact is 1. We live in the USA and 2. We have medical insurance. You would think those things would help us but they don't and here is how.

When you go onto these other sites they all say they help kids with FREE plastic surgery from all over the world with all these different deformity. Although I have not seen nevus listed I am sure they do it, as the ones we applied to in the past did them, but because they were so involved they didn't advertise it! Any way there are places to click to apply and to give, to read stories and get more information. NO where on the web site does it say that if you have medical insurance that you will need a deny of treatment letter before they will take you. If you can't get that they will not treat your kid. They don't take into account that maybe you have the coverage but no doctor in your network will touch your kid, and going out of network is not an option either because of the cost. That is where we ran into problems with other foundations and their rules. Why can they not bill the insurance and take what they can get if they do it for free for the ones with out? That to me would be like a better choice that turning kids away, and by the way the wed site claims they turn no child away, and I guess in away they don't, its us as parents that can't get the right paper work to get accepted.

On the other hand if you live out of the united states, they can get you a visa and pay for everything so you. Come here and your child can have surgery. I didn't apply to this new one I just heard about. I did e mail them and ask insurance information and they do required the letter, or you can just see this Dr in his private office where you pay what the insurance will not. That is really no help for people like
us at all! The only other one besides Surgical Gifts that didn't care about that deny letter was The Shriner's Hospital. They were great, they just wanted to 1. Do skin grafts and 2. Wait until she was 5 to start neither of what I wanted.

This foundation I looked at us in New York and they provide all your travel, minus meals and anything you want to do while there that is not surgery related. So even with that we would fund raise. I know the people that have is the name of this was just trying to help, but we are happy where we are.

You maybe thinking if we are happy with Haleigh's surgery then why would I look at another Foundation's web site, well you can never be too informed and you never know when the information you have might help someone else. I may come across someone who has family in new York and want to go there and has no insurance or at least the right paperwork. But we have found our Doctor, we have found a great foundation that is helping us with everything possible, all her medical needs are covered, and the travel well some of it was donated by the foundation and the rest we have had no trouble raising the funds for. Things are getting expensive and as prices rise so will our fund-raising efforts, but I believe with my whole heart and mind that God has put us where its best for Haleigh to be and we are going to stay right where God Has put us.

So if you come across and want to donate to help children like Haleigh then donate to the foundation helping her.

Emergence Surgical Gifts!

The Ronald McDonald house

I have been given some helpful information about the Ronald McDonald house. And its very exciting.

We have a house here in mobile and when Landon was in the NICU (Neonatal Intensive Care Unit) the social worker asked us how many miles we lived from the hospital. Families that live 50 or more miles can stay there while their baby is at the hospital for 10 dollars a night and that includes meals! I spent more than that in gas every day.

We didn't live that far so we couldn't stay there. I always thought that your child had to be in the hospital to stay there.

I have found out that kids needing treatment but not needing to stay in the hospital, kids like Haleigh, can stay there with their parents!

I am going to call them as soon as I have a for sure surgery date. From what I can see Atlanta has 2 houses, one of them is on the same road as the doctors office we will go to! Also from what I have been told it's 15 dollars a night unless you are needing to stay long term then its reduced to 5 a night and includes dinner every night along with snacks and of course the other families that you will meet there that know how you feel and what your going through. Even though no two stories are the same, the other parents are also away from home and their support system and this becomes your new support.

They help so many families everyday, that even if they can't help us they are doing great things. I figure the worse thing they can say to us is no, or there is not room, so its worth trying for.

The Appointment

Ok i am on my phone wanting to let everyone know what the dr said. 


My computer is acting crazy so this is not going to be about the trip much just the appointment. I do have to say Haleigh was a really good baby the whole 19 hours we were in the van. 


Ok so the hospital is really nice and so is every one there. You have to be checked in even for just an appointment you get an arm band. Since it was our first appointment we had to be seem by a whole slew of doctors. 


But the one we went for.... Plastics he was a really nice guy and the only problem is he wants Haleigh to be older. Between 5 and 6 to do the surgery. He said by then she'll be bothered by it and want it removed. 


No one gets it no one understands why i want this done now and not later. I do not want her to realize she is not the same as every other child. I want this over before it gets to that point and no one gets that. I can not understand why they don't get it. But they don't and i can not make them so....... They want us to come back every 6 months. 


So That they can watch for growth and cancer. But they want to wait for surgery until she is 5. They also want to do the surgery in a way I have never heard before for this surgery, they want to do skin grafts, I am not sure I want it done that way either, I guess I have some research to do on that!

An information day.

I think as far as information goes, today has been a big day.

In the mail I got a package from the Shriners Hospital for Children in Galveston Tx. the package had a letter in it from a care coordinator and an appointment sheet, there was a 7 page health information for me to fill out and a booklet on getting ready for surgery, it is geared to kids, but Haleigh is too young to understand it, It did give information though on how the hospital kind of works.

The letter from our coordinator said that our application has been reviewed and we have been given a screening appointment. Our Appointment is with the head Attending for plastics at the hospital. We will know before we leave there if they can do her surgeries.

Her appointment is September 20th. Just over a month and right at 2 months from the time I sent off the application. This letter gave me the numbers to call for trasportation and housing along with Appointments and the care coordination numbers.

The appointment page just said we will be seening plastics, that our appointment will be on 09/20/2010 at 11am. To call if we can not make it and to bring any x-rays or mri's she has had (there are none) I got to get a copy of her blue card to take with us and any health records we think they might need. I can not see them needing any papers from any where we have been. They also want a copy of her insurance cards and that kind of scares me.

I am excited to go see what they have to say, I am scared they may not want to help Haleigh, although I can not understand why anyone would not want to help a child.

I am not sure how long we will be gone and I have to figure out how we will get there. I need to call trasportation in the morning. I do not want to drive by myself, I am not sure if Jason will be able to go with me or not. I do not know anyone who can take the time off of work to go with me.

It will take about 8 hours to get there and that is no stops added in and with Haleigh not even 2 years old I am not sure I will be able to do it alone anyway. The trip down to florida was bad enough.

The Shriners pay for everything so if I do not drive myself they will either, send a van to pick me up and drive us, buy us bus tickets, or fly us out. I have heard that what the choose to do is based of how many miles your are from where you are going. Well its over 400 miles so Frome what I have to choose from I would rather fly. I guess I will just have to ask when I call. Riding on a bus though will take 2 days to get there for sure.

You might be wondering why it would scare me them asking for insurance cards. Well, I think I have said it before, but Haleigh has Alabama Medicaid. That is the only insurance she has. Medicaid in Alabam is rough but really good all at the same time. You pick a doctor for you kids. We do not have to go to clinics and wait for hours and hours. We are not treated any diffrent at the doctors office, except that they know they can run extra test if needed cause they know the state will pay them for it and don't have to worry about me not paying my bill! I think that is a great thing.

Anyway, back to the worrie. With Medicaid you can not go see another doctor except your personal doctor with out a referral to see one. I understand why, they do not want to pay for a bunch of doctor visits to a doctor that your child does not need to be seen by.

BUT that stops us from being able to find our own plastic team for Haleigh. We have to go to who ever her doctor sends us to.

He has sent us to USA plastics, the doctor we saw was not comfortable working on a childs face... ummm.. No Thank-You.

And then to the dermo in B'ham who wants to leave it be until its cancer, again No Thank-You. BUT her insurance will pay for the surgeries. IF we could find someone to do them, that will take her medicaid, that our doctor will refer her to. If... If.... If.... I do not like that game.

This Scared me today!!

The Fresh Start Surgical Gifts called me today!! Yes they called, When I answered the phone I had to go into the other room and sit down, I could have never imagined they would be calling for this reason though. The lady on the phone said they have her application, and they approved her for surgery all they need is a letter from Alabama Medacaid saying they will not pay for her surgery and why! I told them that it was not a problem getting it covered by medicaid it was a problem getting a doctor to do the surgery who does all be above ifs. She said "So your insurance will pay if you found a doctor who would do the surgery?" Me- "yes" Her "well I do not think we will be able to help then" "you don't really need it" Me- Yes we do I can not pay for this and we can not find a doctor to do it in alabama and take the Medicaid" Her- "well I will file this in appeal and see what comes up, but I do not think it will be approved unless we get that letter" Me- I do not think I can get a letter like that, cause like I said they would pay if..." Her- Maybe you should look harder for a doctor that takes your insurance" Me- Click (I hang up).

Why did she have to say that, why would anyone any where, say up at all hours of the night and search through 100's of pages to find a foundation to do their daughter's surgery, if they could go down the road somewhere and have it done??

I do not get it, If I could have it done here but a doctor here I would, I am not choosing to travel all over the world to get thins done. This is what has been put infront of me and this is what I am dealing with. I do not understand why she had to be so rude!!

I am scared the shiners may tell me the same thing. I feel like they think I am lying.
Oh Course Dr. Connors and Emergence Surgical Gifts has not asked for any insurance information and my mom said she thinks Haleigh will be going there for her surgeries. I guess we will fine out soon!

Waiting

This is the hardest thing I believe I have ever had to wait on, news.

News of any kind really.

I want to know if these foundations have got my applications, I want to know when they will review them and decide on helping Haleigh or not. I guess I also want a bunch of answers.

I thought about it today and realized it has not even been a month since I sent off the apps. I started looking for help the 14th of July, I mailed off the first 2 the 20th of July and here it is only the 11th of Aug. and I was thinking it was taking so so long, but really it has not even been a month.

I know that the shriners hospital got my application because I got a letter saying they did. I mailed the one to Fresh Start the same day, so I can not see why they would have not recived theirs also.

I guess they do not send out letters or e-mails when they get them though. I have a phone number for them and I am thinking of calling to see how long it takes to hear back from them.

I do not want to be treated any diffrent from others who need the help though, I just want what is fair for my daughter. Surgery is what is fair for her. Being born with the Nevus was unfair enough for her, but not getting any help removing it is beond unfair for a child.

We can not help the way she was born and you know if it was just me I would not remove it. She is perfect the way she is. I do not love her any less nor to I treat her and diffrent than I do her Sister and Brothers. We do not single her out and will never do that.

The problem is everyone else, All the strangers and people who do not know what the birthmark is. When grown people ask what happened to her, or if she fell, or if she got burned. I understand a kid they do not know any better, but to ask, but a grown person should keep their mouth shut!

I was asked one day by a growup what she had gotten into because her face was "dirty" I said nothing, that is her birthmark. They man actually blinked his eyes and turned away. I understand he just didn't know what to say but a simple. Oh OK would have been better than that.

I have also been asked by a grownup, "whats wrong with her face" I was really mad at that question, because nothing is "wrong" with my daughters face she was not born "wrong" she was born just the way she was ment to be born, we are ment to walk this road.

We might not understand why we were choosen to be Haleighs parents, but we were and now we have to step up and be resposable.

I told that grown up. "nothing what is wrong with your face." Now yes I could have been nicer, but so could they. They have to know we realize she has something on her face. I hate the questions. I have a hard time dealing with more than one or two a day and that is when I get snapy.

How would Haleigh be able to handle all the questions if she were to have to go to school with the nevus? Whould the kids ask her everyday about it? Or would they be scared of her and not play with her at all not talk to her at all? Or would they just be mean and pick on her all day everyday? These are more questions I need answered that have to wait.

Man I really hate to wait!!

Applicatons

I mailed the application to Emergernce Surgical Gifts today. That was the 3rd one I have filled out and sent in.

They all ask the same questions, Haleighs name, date of birth, when the problem started, if it was there at birth, the parents information, your income and if you have any insurance.

I am guessing while this is free, if you have insurance that will cover even 1% of the treatment or surgeries then they will bill the insureance.

The other two asked for pictures of Haleigh so I send the same ones with this package even though they didn't ask for one. I am hoping them already having them might make things go a little faster.

Our insurance will actually cover her surgery 100%, if we could find a Doctor in Alabama to do the surgery and accept alabama Medicaid, there inlies the problem, the doctors we have seen in alabama are either not willing to do the surgery or want to put it off until she is 10-13 years old.

I donot agree with that at all.

The doctor we saw in Florida that was going to do the surgery for $100 each does not take medicaid, but the surgery center does and so does the hospital. They are in florida though so we would have to have florida medicaid. We have thought about moving to florida and we will if we can not get the surgery done by a foundation. I hate to think of what moving my whole family there would do, and I hate to think of what me and Haleigh going by ourselves would do to us also.

We have an appointment with the Derm. who we have already seen once, told us to wait, on October 6th. I am hoping that by explaining how the Nevus has grown and how Haleigh messes with it and how I believe it bothers her, that she might send us to the Plastic Surgery center there to have it removed.

I do not have much faith in that though.

All I can do is pray.
Pray someone is getting all these applications and pray that someone is getting them to the review boards.
Pray that someone approves us and Haleigh gets into a program sooner rather than later.