Showing posts with label Shriners. Show all posts
Showing posts with label Shriners. Show all posts

Sunday, September 26, 2010

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!

Tuesday, August 24, 2010

It's All Free

at the ball park watching her big sis play
I called the Shriner Hospital today to see how I go about setting up a hotel and transportation. The lady I talked to was very nice and made my reservation for me through the hospital. She said that the rate for the room was 40$ a night. Not bad for a room on the beach. She then asked who my sponsor was. I didn't have a clue so she gave me the number to the Abba Temple here in Mobile and told me to call them.

I called the temple and When the lady answered the phone I told her my name and she said "Haleigh's mom?" I didn't answer right a way then "umm.. Yes" came out.

She put me on hold and then transferred me to my Local care person. Up to this point I didn't know I ad a local anything I thought anything I needed I would be calling TX. Come to find out, that while everything is yes done there, all my services are done through the Abba Temple.

I was asked if we had ever been there and when I said no, he told me how great the beach was and about this place we must eat at. I didn't feel as if I was trying to set any free services up at all, he talked to me like I was a friend.

He told me the best thing to do was ride in a the Shriners Van to Tx. They could come pick us up, but I told them I live so close I would come there. The only reason I did that is so they can not get here early and me not be ready! =0)!!

He said both Jason and I could go the 1st time, but after that only one of us could go in the van and only one of us would be covered under the shriners, and of course Haleigh would always be covered.

I then asked him, how much money he thought I would need for food and drinks for the trip. He said NONE, do not bring your bank card, do not bring all your cash, everything from food to gas from drinks to the hotel is covered. Everything is 100% free.

I about fell out! I had no idea they would pay for everything for all 3 of us. We will of course take our card because you never know what can happen, but to know that it's all free made me feel a little better about going.

The Van will take us everywhere we need to go while there. I was told the hotel has a nice pool and is on the beach. He said it will be like a vacation except for one little appointment thrown in there!

He asked what we were going for, I told him that Haleigh was born with a birthmark on her face. He said a "nevus"? I said yes. He then told me the story of his grand daughter, She had one on her face too and he knew things only someone who has been there done that would know. The shriners did her surgery and that is why he is a shriner. I am not sure if the Hospital gave our case to him because of that. Or If God gave him our case because of that, but I am happy I have someone who understands why we are going to the lengths that we are going to over this.

So we leave September 19th, at 8am. it take about 8 hours to get there, but he said it might take longer if we have to stop longer with Haleigh. Thank- God he understands that too! Our appointment is on September 20th at 11am. We will leave to come home September 21st at 8am. That is our plan for now.

Monday, August 23, 2010

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!