Sunday, September 26, 2010
Updates
There is a Foundation that has acepted Haleigh into their surgial program. The only problem is the foundtion is new and in need of funds. They are in Atlanta and are working hard to raise money just for Haleigh's surgeries. The Doctors name is John Connors M.D. and if you like you can check out his facebook page.
He understands why this is so important to me and for Haleigh.
They are having a fashion show in Ga. soon as a fund raiser and my sister Heather Montz and my friend Jennifer Holt have some great plans for some fund raisers here in Mobile. I hope when we announce what they are everyone will want to come, its going to be lots of fun!!
This is a much longer road than I ever thought it would be, but by the grace of God we will make it to the end!!
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!
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 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!
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.
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!
Saturday, August 21, 2010
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.
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.
Saturday, August 14, 2010
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.
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.
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