Haleigh's kidney test came back normal. She had blood work, a renal ultrasound, and a VCUG. She did really good for a 2 year old. Although the VCUG upset me more than her, I hate seeing my baby cry.
The reason for the worrie was because she had the infection for a while, it looked a lot worse than it really was. Haleigh can not tell me, "hey mom it hurts when I pee", all she said was pee....pee....pee, So we were thinking it was because she watned to potty. And now that I know what it was there was other signs too...but again I related them to potty training. It was not until she was crying in pain that I knew something was wrong. I know now though what to look for and will be on the out look for any new problem!
Thank you to every one who said a prayer for us.
Wednesday, December 8, 2010
Christmas Time & Other Updates
Haleigh is loving the lights and the tree. When we ride down the road she is always saying "mama mama look look lights!" Its so exciting to see your children so excited about Christmas lights.
We have taken Haleigh to see Santa a few times. The first time was before Thanksgiving, we were just at the mall and didn't expect to see Santa, but he was there and all the kids wanted to talk to him. Haleigh sat in the stroller and did not cry, she took her book he gave her and waved good bye to him. This made me think, we needed to have Santa pictures made, because they would be really good since she was not scared. So the week after thanksgiving we took them to the bass pro shop to have Santa pictures made. Haleigh would not get down, would not talk to him, would not wave! We got their free offer picture of none of the kids looking and Madalyn holding an upset Haleigh. Then we went to a family Christmas party, Santa showed up and as soon as he walked in the door, Haleigh starts screaming like someone was hurting her, it was crazy, but by the time he was going she had waved a few times. This past weekend we went to the Shriners Christmas party for kids they have helped this year. They sent me a invite in the mail in October, we RSVP in November. They fed us lunch and had a DJ playing Christmas songs and other children's songs. Haleigh no plays Head, Sholders, Knees, and Toes all day long! The Shriners are so so nice. The bought Haleigh a gift, a peek a boo baby, she loves it. I think that is going to be it in Santa visits, although Haleigh was not scared at all at the Shriners party.
We have taken Haleigh to see Santa a few times. The first time was before Thanksgiving, we were just at the mall and didn't expect to see Santa, but he was there and all the kids wanted to talk to him. Haleigh sat in the stroller and did not cry, she took her book he gave her and waved good bye to him. This made me think, we needed to have Santa pictures made, because they would be really good since she was not scared. So the week after thanksgiving we took them to the bass pro shop to have Santa pictures made. Haleigh would not get down, would not talk to him, would not wave! We got their free offer picture of none of the kids looking and Madalyn holding an upset Haleigh. Then we went to a family Christmas party, Santa showed up and as soon as he walked in the door, Haleigh starts screaming like someone was hurting her, it was crazy, but by the time he was going she had waved a few times. This past weekend we went to the Shriners Christmas party for kids they have helped this year. They sent me a invite in the mail in October, we RSVP in November. They fed us lunch and had a DJ playing Christmas songs and other children's songs. Haleigh no plays Head, Sholders, Knees, and Toes all day long! The Shriners are so so nice. The bought Haleigh a gift, a peek a boo baby, she loves it. I think that is going to be it in Santa visits, although Haleigh was not scared at all at the Shriners party.
Other news, Haleigh is off her formula, she is on whole milk! We are so excited, we go to the GI on the 16th of December and can not wait to tell him she is doing so well on whole milk.
We are traveled to Birmingham, Alabama to see plastics at UAB on December 28th to see what they have to say! They were willing to do the surgery but seemed to have cocerns about her size. I am still trying to decide what to do.
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| Haliegh playing in the waiting room at UAB Children's South |
I want to again thank all the people who have given money to Haleigh, please know it is all going to her. Some will be used to get her to her appointments, because if we can't get her there what's the point of having all the medical covered?
Haleigh is doing good with her Asthma too, we now have her on the right meds it believe to help her get through the winters. She weighed in the other day a 24 pounds and 8 ounces, and even though her iron level is a little low at 10.6 she is healthy, there is nothing better than hearing the doctors say she's healthy!
Wednesday, November 24, 2010
Calls
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| Haleigh running around the kitchen |
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| Landon |
Added Health Concern
When Haleigh was born she had a small amount of fluid on her kidneys. She had several ultrasounds and by the time she was 18 months the fluid was gone and the doctor said everything looked clear.
I got her into the doctor a few days ago thinking she had a possible bladder infection. The test ran that day was fine.
But today I received a call today telling saying that the urine that sent off to the lab had a bacterial growth.
The doctor wants to run more test on the 30th. I have no idea what these test will be or what they are trying to find. Please pray for Haleigh. Pray that all test will come back clear and that we will stay calm through this process.
I got her into the doctor a few days ago thinking she had a possible bladder infection. The test ran that day was fine.
But today I received a call today telling saying that the urine that sent off to the lab had a bacterial growth.
The doctor wants to run more test on the 30th. I have no idea what these test will be or what they are trying to find. Please pray for Haleigh. Pray that all test will come back clear and that we will stay calm through this process.
Friday, November 19, 2010
Thursday, November 18, 2010
Thanks
We would like to thank the Sunday School Classes at Haleigh's Aunt Heather's church that allowed her the opportunity to come in and share about Haleigh. We would also like to thank those of you from Heather's church that have already donated to help Haleigh.
Wednesday, November 3, 2010
Growing
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| Haleigh and her Mom, Crystal |
Haleigh had a genetics appointment today, its been a year since we have seen him. They showed me a picture they took at her last appointment and I was surprised at how much of a baby she looked then and how much of a big girl she looks now. I also realized how much her nevus has grow in a year, last year it was not on her nose or chin and this year its half way across her nose and 1/4 of the way across her chin. That's pretty fast growth no matter who you ask.
She is also growing in other ways, Haleigh weighed in at 23 pounds 6 ounces and is 2 feet 9 inches tall, her head is 42 cm around. When we 1st went to him Haleigh was 7 months old and all of about 11 pounds, so for them to see her doing so well made them smile.
They asked me all kinds of questions, like they always do. They want to be sure she is having no major health problems that have come up in the past year. The only this that has changed is her Asthma, and since we are not seeing an asthma doctor, they call it mild. I told them how she was talking, walking, running every where, and how good of an eater and sleeper she is. Everything I told them was normal for a 2 year old. They asked what if any concerns I had for her and the only one is her nevus.
Dr. M, said told me that if Jason and I were to have 20 more kids none of them would be at any more risk for the birth defect Haleigh has than any other child, that this is just something that happens and its not my fought and its not Jason's fought. My grand kids have no greater risk of the birth defect either. He has told me this before, but its so good to hear someone say "you did not do this". No matter how hard a mother tries anytime anything ever happens to her kids, even if she was not there when it happened, she feels it's her fought. I have thoughts, What could have have eaten, what could I have avoided, did y throwing up my prenatal do it? Every thought ends with it being my fought!
I got some other news that I really did not and still am unsure of what to do with it. I asked Dr. M, what his advice was and he had no problems giving it. So here is the news, there is this doctor is B'ham, he somehow found out about Haleigh and the trouble we were having with finding a plastic surgeon in Alabama that we could get a referral to see. With out contacting me first, they contacted Haleigh's primary doctor and told them they thought they needed to see her and got them to give a referral, the surgeon's office then contacted me with an appointment date and time. I was very taken back, because I know nothing about this doctor and have never contacted them. I do not even know if I want them to do surgery on my child. I do not know if I trust them. It seems to me or at least feels like they went behind my back at 1st, but maybe they were just trying to help, I really do not know.
So, Dr.M, asked today about our plans for removal and I told him about Dr. Connors and then about Dr. Grant in B'ham. What he said makes since, He told me there is no reason not to go meet the doctor in B'ham. He did say that the way they got Haleigh's referral was not the way it should have been done, and that he has a feeling he wants Haleigh's case because it will bring him in more kids like Haleigh and with that means more money for him. While we do not know for sure, he also said to not be surprised if they ask to take a lot of pictures, have a bunch of students come in and look at her and want to publish a study. Of course I can say no and they can not do any of it. And nothing will be done with out my OK. He said if it was him he would take his daughter and see what his intent is. He also said that what Dr. Connors is doing sounds great, and we should continue to help him in any way we can, not only for Haleigh, but for other children that will be in her shoes in the future. He also said if there was anything he could do for us to let him know. I wish he could be our primary doctor, he's so great and just sits and listens and then talks to you like a parent, like a person. He explains everything to you and makes sure you leave understanding everything he has said!
He also talked to me about 2 ways they surgery could be done, he did say he was not a plastic surgeon though and for the most up to date information there is that plastics would be able to give me that information. He advised me to go to B'ham armed with information and ask questions I already know it answers to, just to see what the top of his head answer will be, if he needs a computer or a book to answer me, then don't trust him.
So I guess I am going to take Haleigh to B'ham at the end of December to talk with this doctor and see what his intent was on getting Haleigh in to see him.
Maybe this is the way God is leading us, maybe God just wants me to visit B'ham for another reason, maybe it's to see what not to do. I am not sure, what I am sure of though is no matter what I have 2 great doctors behind me no matter what!
Monday, November 1, 2010
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!
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!
Monday, October 25, 2010
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!
Monday, October 18, 2010
Cook Book
We are currently accepting recipes to be put in a cook book that we will be selling to raise funds and awareness for Haleigh and children with the same condition. If you would like to submit a recipe you can contact me at haleighstory@yahoo.com.
Thursday, October 7, 2010
DONORS
Thank you to those that have already donated funds or have contributed time for Haleigh. Each of you know who you are. You are helping change her life forever!
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| Haleigh at the park with her grandpa |
Monday, October 4, 2010
The Understanding of Others
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| Mom's front porch |
I really wish others could go with Haleigh and have other moms tell their children she has something on her face. I always smile and say I know, that is the way she was born. I have got the “oh sorry”, the smile because they do not know what else to say and I have been asked 100 questions too.
I can honestly say I out of the 3 I would rather get asked questions. I mean saying you’re sorry? Really for what, I am not sorry she was born this way. God made her that way and I love her I am not sorry. And if you don’t know what to say after that then maybe you should not have said anything to begin with!
Then today I was really unsure how to handle a spot I was in. I was shopping at Winn Dixie they employ people with mental handy caps. I have no problem with that. I think it is great. Except the man who was aching our stuff didn't understand that her face was not dirty and he kept trying to wipe it. They did nothing it was up to me. I had to tell him not to touch my baby! I guess it just upset me. Sometimes, I wonder if everyone looks at her and then at me and wonder why I do not wash her face
Haleigh is sick
Haleigh got up yesterday morning, after not sleeping much, with a runny nose. Yesterday afternoon she started to run fever and coughing. Last night a gave her a warm bath and some Advil and put her to bed, an hour later Jason went into her room to check on her and she was on the floor with her pillow and blanket. She has learned to climb out of her baby bed! She was also so stuffed up and coughing, so I took her out in the night air while Jason sat up her breathing treatment, as she was wheezing too. That was at 10:30 pm, we were then up at 1am for a treatment and meds, 5:30 for treatment and meds. and because Landon had another appointment today my mom gave her one at 10:30am. She woke up on her own coughing and wheezing. So we had to cancel her GI appointment that was to see if we could take her off her formula, the next appointment we could get was for December 16th, yes December 16th, but at least its of this year! She has an appointment in about an hour, I wanted them to listen to her, but I am not sure there is any thing else they can give her, She's already on the breathing treatments. I guess I just want to be sure there is nothing in her lungs and that her ears are clear.
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
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| 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.
Friday, August 13, 2010
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!!
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!!
Wednesday, August 11, 2010
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!!
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.
Man I really hate to wait!!
Friday, August 6, 2010
Growing or Just now Showing??
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.
Thursday, August 5, 2010
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.
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.
Wednesday, August 4, 2010
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!
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 onGiant 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!
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