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!

Tuesdays

It seems that there has been way too much time between blog post on Haleigh, so I have decided to make it easier on everyone, and update once a week. The best day to check for anything new will be Tuesdays.

Haleigh is doing well, during the fall and spring months her asthma gets worse and she has had to have extra meds for it in the past month. Once the cool air sets in and her lungs get use to it we'll be able to cut back again. She takes her breathing treatments really well. She use to fight me for the whole 5 minutes it take to complete a treatment, and if you have ever sat with a kicking screaming child for a whole 5 minutes you know that is an extremely long time. She will not sit still for 3-4 mins and gets ants in her pants for the other 1-2 mins. Not too bad.

Haleigh is growing really well too, I am not sure of her weight this week, but she goes to see her doctor on the 12th for her 2 year check up. She eats all of her meals no instead of drinking mostly formula, although she still does get her formula, she'll only take about 16 ounces a day. Her next GI appointment is December 16th, 2010. I hope when we go to that appointment he approves whole milk for her. She's been eating milk and soy with no problems for 4-6 months now and eats cereal with milk in the mornings, so I do not see the need for the formula in her diet any more.

At her 2 year check up I am going to talk to her regular doctor about her Nevus. They have told me a few times  that Nevi are not painful and she can not feel it, but I am not sure they are right. Haleigh has sensitive touch I am guessing you would call it. From the day she was born, she has been more sensitive to things touching her. Her blankets had to be softer or she would cry, her diaper could not be too loose or too tight, her clothes, her socks, her shoes, everything had to be just right. She would only take one kind of bottle and you had to hold it just the right way. I  know for an older child you would call that spoiled, I guess Haleigh came here a High needs baby, or spoiled whatever you would like to call it, she's always been that way. So she has started to rub her face and say OUCH! She rubs the inside of her cheek and said ouch, I believe a 2 year old can not make up pain. Just because someone else with a nevus like Haleigh's does not have any pain, does not mean that Haleigh does not feel what ever she is feeling as pain. I have never seen another baby have to have socks on, or have their diaper changed with in 30 sec. of being dirty even if in the car or boy you were in for it!  I doubt her doctor will know what to do with the information, he always tells me to call the Dermatology. and they always tell me she's fine, the only reason I tell him is because if you tell them they have to chart it, and I want it charted that I have at every appointment been concerned about it.

We have been working with Emergence Gifts raising funds for Haleigh's surgery, I wanna thank all the people dropping their change off in our bucket at the ball park. It really adds up fast, in the past few weeks we have raised about 100$.

I have some other news that I am hoping helps with a lot of the funding. On January 1st, 2011 We will have, Blue Cross and Blue Shield Anthem, through Jason's job. If the Children's Hospital of Atlanta takes the insurance, and the insurance will agree to pay for the surgery, it will cut the cost of Haleigh's surgery by about 80%!! That is a huge cut, of course there are a lot of ifs with that, but it's worth a shot and I think if they will see the nevus as a birth defect and not a cosmetic enhancement then they should have no reason not to pay for it.

I feel as if we are getting to our goal of being done with it all by the time she is 5 years old. So she can go to school and not have the other kids point and stair. That has always been our goal, to help her live her life as normal as every other child!

Good News

There is a possibility that we will be approved for insurance through Jason's work. If that happens and we can get them to view the Nevus as a birth defect and not cosmetic some of the cost will be covered. We are praying that this will come through so that the amount we need to raise will be lower than we thought!

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!