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.

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!

E-mails

When I talked to Dr. Connors at Emergence Surgical Gifts, he asked me to send him some pictures of Haleigh, both by mail and e-mail.

I looked and looked and realized I didnot have any pictures of her in the past 2-3 months of just her that were not under a copy right.

So my mom and I got her all dressed up and took some. They turned out a lot better than I really thought they would.

They were e-mailed to him thursday and we heard back Friday. I snail mailed them out friday too. The e-mail back told me how pretty Haleigh is (knew that lol) and how he is excited about helping her, and that he will keep me updated on everything that is happening with geting her surgeries done.

I am so glad this doctor want to help Haleigh, and I am glad he is willing to keep me informed on what is going on, instead of me just sitting here waiting. I at least know that he is trying, that someone in this world that can do something is doing something. I know that someone other than me is working as hard as I am at this.

I do not think I will ever be able to tell these people exactly what they are doing for my daughter, all I can do is pray from them, and pray they know how much they are going to inpact Haleigh's life, now and for her future.

So many questions.

I have so many unanswered questions. With all that I have learned in the last 21 months of Haleigh's life, I still have many many questions. Some about her and some about the care she has received and will receive.

There are so many choices you make for your child before they are old enough to make them for themself. How do you know you are making the right ones? How do you know this is what they would choose for themself if they could? Do all parents feel that way? It starts from the moment they are born, even the choice of what to feed them, I have always wondered, "if I asked my kid what would they want?"

  With Haleigh's whole life there has been so many choices to    make, Not only with her Nevus but also with her overall health. 

Of course they can not answer you, so you do the best you can with the information that is set infront of you and pray that when they get older they don't hate you too bad for the choices you made for them.

My perfectly Brestfeeding baby, who could not gain an ounce of weight for weeks at a time, we finnally figured out was MSPI and reflux. We had doctor appointments for months just to find a reson for that, doctors ran every test there is on her and I felt so bad putting her through that.

I feel the same with the surgeries, now that they feel more real. I am thinking, Haleigh is so perfect. I made her just the way she is, I do not want the surgeries to change who Haleigh is.

I just want to give her the chances she will not get if we were to leave the nevus as it is now. I know all surgeries have their own set of risk.

I know that there will be physical pain with these surgeries, but even with that I can not get the word Cancer out of my head. Even since the 1st doctor said she was more at risk that other people for being born with the nevus, I have thought Haleigh is our 1% baby. And even if the risk is only going up by 1% that is too much. Well her chance of getting cancer vs. everyone that is not born with the nevus is 400%. Every person has between 0.5% and 1% chance of having skin cancer sometime in their life time. Haleigh has somewhere between a 5% and 20% chance (depending on who you talk to) of getting cancer by the time she is 13 years old. Haleigh does not do good when it comes to %'s like that. Here is some of the 1% of babies she is in.

1. 1% of babies are born with a true knot in their cord.
2. 1% of babies are born with a large/giant nevus.
3. Of the 1% that are born with the large nevi, 1% of thoes babies have them on their faces.
4. 1% of babies need the MSPI formula that Haleigh needed.
5. Of the 1% that need the MSPI formula 1% of thoes go on to need it after their 1st birthday.

With all those things I do not feel good about her cancer risk. It does not feel safe for her.

Other questions that come to mind are more about the foundations.
I never thought I would get a "yes" from one with out getting "no" from the others. I thought I would get "no" until I got a "yes". I never thought I would get a yes 1st.

What happens if I get a yes from someone else too? How will I choose where to go? I still have not heard from anyone else yet. The 1st thing I know I will do is call Dr. Connors and ask him what I should do. How long he thinks it would be. I mean if I got a call from Fresh Start saying they wanted to see Haleigh next month that would be really hard to turn down. Even though it is in Cali. I feel like I am doing the right thing going to Alanta. It feels right going through Emergence, and like Jason said, they were the 1st ones to call and want to help Haleigh.

I also believe Haleigh was ment to help that foundation too. Help them get grants for other kids. BUT saying no to quicker care would be a hard thing to do. Then there is Octorber. We have an appointment with dermo, to beg for her to send us to the facial plastics there so out insurance will cover it. Do I go, or do I put all my trust and Faith in Alanta???

No one ever told me being a mom would be this hard. I never thought when I became a mom 12 years ago that I would be making these choices for my child.

Good news today

I got a phone call today that gave me so much hope and faith that I cried and then laughed. The call came from Emergence Surgical Gifts, Dr. Connor's called me himself. I was in shocked to get his call today it was about 4pm. This is what he said.

He got our application and Haleigh is the kind of children he wants to help. Haleigh is the 1st application he has gotten to remove a nevus. He has removed them before as he has worked as a facial plastic surgon for years. BUT the foundation has never done one. His foundation is very new, and since Haleigh will be needing more than one surgery he wants to get her set up with one hospital in Alanta. Most likly Childrens Hospital Alanta. That way we will know that all of her surergies will be done at that one hospital with the same team of nurses and doctors. Dr. Connors will do all of the surgeries himself.

I didn't know what to say to him, I told him that we have been trying to get Help since Haleigh was 6 months old and I told him thank you. I also asked if there was anything else He needed from me.

To my surprise he said yes.

When I mailed him our application, I wrote him a letter, saying how much we wanted Haleigh to have a normal life and how this surgery was the only way for that to happen.

He said he has never had a letter written like that to him and it was very moving to hear how a mom felt. He wants to use Haleigh's pictures and the letter to help him get grants and fundraise for the foundation.

I am excited about this too, Haleigh is going to help other children by helping this foundation get funding and getting their name out there. I am e-mailing him pictures and sending a release and pictures through the mail next week.

He did tell me it was going to take time to get her team together and I would have to trust him, and have faith in him. To let him do surgery on my daughters face I am going to have to have that in him so I need to start that now. How much time? I do not know he said a couple of months, he said he can not wait to meet me and Haleigh and how honored he is to be the one to help her.

We got into a program!!!! We got into a program!!!
Haleigh is going to have what every other child has..... A childhood!!

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!!

Growing or Just now Showing??

When Haleigh was born her birthmark was smaller than it is now, since she has grown the nevus has seemed to grow with her although it has not spread to other parts of her body or face, until now.

Now the nevus has either grown, spread or is just now showing below her lip and on some of her chin, I took her to the doctor and they can not tell me if the bad tissue has already been there and is just now coming through to be able to see it, or if the nevus is actually growing.

I am not sure What I am hoping for growth can mean cancer, but if its always been there sitting under her skin then who knows how big her nevus really is.

It could be larger than any of us are thinking about and might make surgery more complcated. No matter how complcated the surgery is it should have already been started. If it's growing then I am going to be so mad that I didn't get on the ball trying to find help sooner.

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.

A little background

I could not start a new blog about Haleigh with out filling in where we started from...Her birth.

Haleigh was born on a monday afternoon in November 2008, she was 5 weeks early and weighed in at 5pounds 2 ounces and was 18inches long. Haleigh is my 5th child and my 1st VBAC (Vag birth after a c-section), I had no problems through her labor and delivery her heartrate dropped once during labor and then again when she was almost born, right as she was delivered.

The problem was a true knot in her cord, true knots happen in 1% of all births in the USA, and a lot of babies die before they are born sometime in the 37th week because of the knot, I am lucky to have had Haleigh early. When she was born after they weighed her and before they handed her back to me, my nurse told me that Haleigh has a small birthmark on her face and a lot of bruises from the birth.

My OBGYN said the bruises were from him grabbing her face, he did that because her heart rate had fallen. When the bruise did not go away we saw her doctor who then told us the whole mark was a brithmark, but he didn't know what the name of it was.

We did get a name later on

Giant Congenital Nevus

While Haleigh has been to many many doctors for more than this problem this blog is about the Nevus not feeding problems that have mostly gone away now, that she is older.

Haleigh went to see a plastic surgeon  when she was about 6 months old, he told us that it was unfortunate that her nevus was on her face, but removal was not something her was willing to do... sorry.

Haleigh has seen a derm. in Birmingham last winter who told us to leave her alone and not to make it a big deal, they also said if we removed it she needed to be 10-12 years old.

I didn't know where else to turn since our Dr. was the one sending us to these other doctors. I thought they knew more than I did and were right.

But you know what kids are mean and sometimes people who should know better than to say a word are mean and rude too. The more comments I have gotten on her birthmark the more I realized it has to go!!

I researched and found a doctor in LA who does these surgeries all over the world. I called and while they would have seen Haleigh I was given the name of a Facial Plastic Surgery in Panama City Fl. He was a great doctor and said he would do her surgeries (8 of them) for 100$ each, the problem is the surgery center where he does surgery is 3,070 for each surgery and the hospital that we could go for is even more than that. The cost puts that out of reach for us. And that suck!

I came home from that appointment and searched the internet and found 2 foundations that help children like Haleigh, they are

1. Shriners Hospital
2. Fresh Start Surgical gifts
today I found a 3rd.
3. Emergence surgical Gifts

I have sent applications to the 1st 2 foundations and I am sending the 3rd one with in the next 2 days. I have heard from the Shriners, her case has to go in front of the cheif of surgery and the the reviwe board after that we will be contacted. But at least I know they got everything they needed from me. They are in Tx.

Fresh Start I have not heard from they have reviews 7 times a year and I am not sure when their next one is, so I do not even know if they have looked at her app. yet, but it didn't come back so the must have got it. They are in Cail.

Emergence is in Alanta Ga.

All of these places pay for everything related to the surgery including travel and hotels. I am so glad there are people out there like these to help children like Haleigh, if not for them then WHO!