Thursday, April 28, 2011

Other Foundations

When I first decided on my own that we would have Haleigh's nevus removed, I was really clueless on what we would go through to have it done. I have written before about all my searches and the different doctors we went through on our way. And I also wept about other foundations that do most of the same things that Surgical Gifts does, but not exactly fit for us.

Last week and then again this week I was given the name of another foundation that helps kids get plastic surgery, tonight I took a better look at it and while its a good foundation they still wouldn't help Haleigh if we even applied. I know your thinking what? Why not Haleigh? And the simple fact is 1. We live in the USA and 2. We have medical insurance. You would think those things would help us but they don't and here is how.

When you go onto these other sites they all say they help kids with FREE plastic surgery from all over the world with all these different deformity. Although I have not seen nevus listed I am sure they do it, as the ones we applied to in the past did them, but because they were so involved they didn't advertise it! Any way there are places to click to apply and to give, to read stories and get more information. NO where on the web site does it say that if you have medical insurance that you will need a deny of treatment letter before they will take you. If you can't get that they will not treat your kid. They don't take into account that maybe you have the coverage but no doctor in your network will touch your kid, and going out of network is not an option either because of the cost. That is where we ran into problems with other foundations and their rules. Why can they not bill the insurance and take what they can get if they do it for free for the ones with out? That to me would be like a better choice that turning kids away, and by the way the wed site claims they turn no child away, and I guess in away they don't, its us as parents that can't get the right paper work to get accepted.

On the other hand if you live out of the united states, they can get you a visa and pay for everything so you. Come here and your child can have surgery. I didn't apply to this new one I just heard about. I did e mail them and ask insurance information and they do required the letter, or you can just see this Dr in his private office where you pay what the insurance will not. That is really no help for people like
us at all! The only other one besides Surgical Gifts that didn't care about that deny letter was The Shriner's Hospital. They were great, they just wanted to 1. Do skin grafts and 2. Wait until she was 5 to start neither of what I wanted.

This foundation I looked at us in New York and they provide all your travel, minus meals and anything you want to do while there that is not surgery related. So even with that we would fund raise. I know the people that have is the name of this was just trying to help, but we are happy where we are.

You maybe thinking if we are happy with Haleigh's surgery then why would I look at another Foundation's web site, well you can never be too informed and you never know when the information you have might help someone else. I may come across someone who has family in new York and want to go there and has no insurance or at least the right paperwork. But we have found our Doctor, we have found a great foundation that is helping us with everything possible, all her medical needs are covered, and the travel well some of it was donated by the foundation and the rest we have had no trouble raising the funds for. Things are getting expensive and as prices rise so will our fund-raising efforts, but I believe with my whole heart and mind that God has put us where its best for Haleigh to be and we are going to stay right where God Has put us.

So if you come across and want to donate to help children like Haleigh then donate to the foundation helping her.

Emergence Surgical Gifts!

Saturday, April 23, 2011

Some Questions are Better than Others.

This past week was spring break for my older kids, we had a great time and did lots of fun stuff with them.

On Friday I took them to the beach, it was such a great day, toward the end of our time there, I was sitting on the beach close to the water watching the kids run and jumping in the water. When a man who I have to say creeped me out a bit since he was in long pants and a sweater, sat maybe 4 feet from me and was alone. I was glad to have a friend with me.

Anyway Haleigh loves everyone, it scares me how loving she is to everybody! So she was going to hand him her shovel and I said no baby here I am. She came to me then this guy turns around and asked what happened to her face. I told him it was her birthmark and it was just the way she was born. He said "oh".

Haleigh was sitting in front of me digging in the sand when this guy turns around and asked her name, Haleigh didn't answer neither did I so he said it again Haleigh gets up and walks to the water and said "I princess" lol, she came right back and this guy then said, "is that hair?", I said "yes its part of her birthmark" he had this look on his face like either I was lying, or he was confused. He was really starting to creep me out and my friend said, oh its 130, we are so going to be late! I agreed and we gathered our kids and left. She felt the same creepy feelings I did. I use to take the kids by myself to this beach all the time now I don't think I will.

Today I went to get some last minute food from wal mart, I hate going in there, so I was in line waiting and a woman behind me starts talking to Haleigh, she said what's your name, Haleigh answered "princess" as always!

Then the woman looked at me and said "oh is that a birthmark" I wanted to dye! Ugh twice in 2 days really! I just said yes and then I was shocked and happy all at the same time, she said "its a CMN?" um... Yes I say, she said my grandson had on on his back and neck we went to Florida to have it removed. I told her we were just staring getting hers taken off and she offered the doctors number they used, but I told her we had one and showed her where Haleigh's scars were, she didn't notice them until I pointed them out. She told me how great Haleigh looked and I told her the real name so she could pray for us. I left smiling and wondering why other people who ask questions can be more like this lady, and I realized its because she had been there and understood what we were going through, and how questions might make us feel. She is in our Nevus family!

Thursday, April 21, 2011

Second Surgery 4 to 6 months

While planning our 2nd trip to Atlanta, I was so excited to take our other kids and planning how we can make it special, seeing as this will be our vacation too, I put in the back of my head it is also surgery. Not that I forgot, just that I put it in a little file. We are still taking them of course but I am thinking we will scale back just a bit, as good as Haleigh does she still needs down time to recover.

And I got word from Atlanta just a few minutes ago. We were asked to look at our calenders for 4-6 months from now! Dr.c has been super busy in his office and that's good, his office being busy allows him to do what he does for Haleigh and other kids that have been applying for help through Emergence!

So I looked at our calenders and as you would expect there is nothing 4-6 months from now! All we want is a Monday or Tuesday surgery so that Jason only has to take the one weekend off, and he will have too, or vacation he can take for that.

As Haleigh gets older I hope she does not fear going to Atlanta. She will tell you all about it in Haleigh talk, I can make out a few words like Haleigh, doctor, face, dog, and fishy. Oh and ride in the car. So she remembers and I am glad she remembers the fishy and dogs along with the doctor and her face.

Friday, April 15, 2011

Getting Ready To Sale

I took Haleigh to the church today to get ready for her yard sale. I needed to help sort through some stuff and I was hoping it would be ok to take her and her not pull everything off the tables. Being 2 she tends to get into stuff she is not suppose to. She did great though, she played with the toys some and played with some shoes, but she didn't do anything that could not be fixed in a few short minutes.

We have a lot of good stuff to sale and some of my church family has already come to help and shop, kind of a peek of helping the days before the sale. I took all of Haleigh's left over formula and have it for sale and if there is someone who can actually use it I will wind up giving it all to them, I have so much of it and it can't be used by just any baby so I can't just give it to a food bank. Any way come out and support haleigh!

Airport Blvd. Baptist Church, Mobile Alabama!

Wednesday, April 13, 2011

Its How Much?

I decided to do a little math last night and remember I am not that good at it. Well with gas prices 40 cent higher per gal since the last time we traveled, I decided I needed to re figure some of our budget. Since we have gotten a newer truck it does get good gas mileage for being a 3 row SUV, but as big as it is its going to cost a lot. So much in fact that is is going to be cheaper for us to go up the day before surgery and just stay until the next week when we take stitches out. That means 8 days in Atlanta, it also means taking all 5 kids with us. We are just going to treat it as a vacation. We had kicked this idea back and forth for a while, but seeing as its going to cost about 160.00 in gas one way so 320 round trip, we know its cheaper to just stay.

Haleigh hunting eggs at the church.

And the kids really want to meet the Dr helping Haleigh and see where we go. Now I need a good 8 night, kid friendly hotel! Or we might actually stay a little out side Atlanta at a camp ground that has cabins and a lake to swim and fish and other activity for the kids.

If gas keeps going up the way it is, her 3rd trip Haleigh and I might go our self and fly! Its scary to think that might be cheaper than driving 320 miles!!

Tuesday, April 12, 2011

The Unknown

There is so much I am still learning about nevi and how they become. I like so many fear the unknown, and most people have never heard of CMN the skin condition Haleigh has. And for most people myself included your don't start to learn things unless you have to. Before Haleigh was born there was no need for me to know all about CMN, or how it affects lives. But awareness is something I have come to realize is a must.

Last Friday there was a little 2 year old boy who died from a complication of CMN, not from surgery, but from tumors that can develop in the Central Nervus System. Have I know this is a complication of what Haleigh has? Yes, why have I not said anything before? Because what research I can find and believe me its not a lot, has shown that this complication is rare, and mostly seen in kids who have nevi on their spine and tops on the head. Also there is a link between children who are born with a lot of small nevi instead on the one large one Haleigh was born with. Since Haleigh is in neither of these groups I have tried to buy it in the back of my mind. The truth of the matter is though I should be making a voice for it, not hiding it away. We are raising funds for travel and should be raising more awareness than we are.
Words can not express the loss this family has endured, I hope we as a fellow nevus family member can shine a little light on awareness, and pull in some funds for more research on CMN and eventually have a cure.

Its scary to be in the unknown, to not know if your child will be in the very real % that has a serious complication from this skin disorder, or will we be among the ones that only worry about removal?. The research I have read seems to be that if we can get her to 13 years old with no complications including Cancers then she will be at no higher risk that anyone else. That is 10 and a half years away.

Sunday, April 10, 2011

Team Haleigh

The Softball tournament this past weekend was awesome. I hope everyone knows how thankful we are for the support our community has shown us. All of the girls that game from all over the county played great, and showed wonderful sportsmanship.

We started the tournament on Friday night, the 12's and 8's had 7 teams each so there was a need for Friday night games. We decided that while our team name is KAOZ we would call them Team Haleigh.

So we had the 1st game of the 12 and under teams and started at 7PM, we won against a team that we are great friends with and both teams played awesome! With that win we would play, Saturday morning at 1030. We won that game and then had a long 4 hour brake that turned into is not playing until 530 that evening.

While we were on brake we met a lot of people, most just wanted to meet Haleigh and give us their support, a few of the vendors gave us free stuff for Haleigh and we got some contacts that told us they would help us with fund raisers, we were a little over whelmed with all the support and love we were shown, but we're so grateful for all of it.

We played and won our game at 530 and were setting up to play in the championship game, team Haleigh wanted to win this game for her and they lost. The great thing about playing a double elimination tournament is that if you have not lost yet the next that has has to beat the undefeated team twice.

KAOZ, Team Haleigh
So at 945, we started the very last game of the night. Our girls were tired our girls were crying our girls were mad! Our girls played all day in the sun and 90 degree heat and we told them that we were so proud of them and that they were awesome. The game started and our girls ripped the ball! They were on their game for sure, the pitcher threw strikes, the catcher caught foul balls, 1st base dove in the dirt, all the girls hit the ball and we won. The other team played a great game too. But our team was team Haleigh and they wanted to win for her and they did it.

I am so so proud of all of them.

Haleigh went on the field to help hand out the 2nd place metals and the 1st place trophies. I was crying and smiling, I didn't even know I had tears until I saw Jason did too. We were just so proud of our girls and so over whelmed to see everyone clapping for Haleigh when they have her her trophy, yes she got one. They all had her name on them so of course she got one.

And that was it, we were told we made a lot of money, but we don't know exactly home much. I do know that when we get the check we will be opening Haleigh her own savings account, and I will transfer the money from our savings that was from the paint party. I will be able to pull it out when ever Haleigh needs it for travel and medical needs. The medical needs that relate to her nevus of course!

Haleigh had a great day playing and having ball park fun. She knew it was all about her and yesterday she was right.

Hitting 4 Haleigh "A Tournament to Make a Change" Thank You & Photos

The tournament was a huge success!

We would like to thank everyone that so generously 
gave of their time & funds to pull this event together.

Also we want to say thank you to each ballpark, team, and family that participated.

And finally we would like to thank those that came out for no reason 
other than to simply support Haleigh.

The outpouring of love that was shown to our family means the world to us! 
Each and every one of you need to know that you have helped change a life! 


Prayer took place after each game
with both teams huddled on the pitcher's mound

Jason, Haleigh's dad

Thursday, April 7, 2011

Hitting for Haleigh

Tomorrow night at 7 PM the first Hitting for Haleigh game of the weekend tournament will begin!

Madalyn's team KAOZ plays at 7 against the Crushers! These teams are evenly matched and its always a great game. There will then be a game at 8 friday night and all day saturday. I am not sure who all the teams are but last I heard in the 12 year olds there were 8 teams playing! Then there are the 8's 10's and 16's that are also playing! This is going to make a huge difference in helping us travel with Haleigh. And I hope everyone will come out and watch. There is a $1 gate fee and that will also go to Haleigh, along with the fees the teams paid to play.

I am really excited, its going to be a great weekend!

We are also having a pre sale on hitting for Haleigh T shirts! There will be a sample at the park this weekend, they are $10 and the profit goes to haleigh!

One day when haleigh is older I will make sure she know all the people that loved her and helped us through our travels with her!

Monday, April 4, 2011

Not my choice

As a disclaimer, I can only give my own view on my on life, and my own choices, I would never yet to make a choice for another mom.

In the past week I was messaged a question that I had actually never thought of before. This was the first time I had ever been asked this question though, I am not sure if others have wanted to ask, or what they would think, but with out using any names I want to answer the question. So what was it?

If I knew before Haleigh was born that she would have her nevus and all that we would go through would I have had an abortion?
Short answer No.
Long answer, I would not have an abortion unless it was too early for the baby to survive and I was going to die if I continued with the pregnancy. I can see no other reason I would be ok with myself. I did have all the prenatal testing for different syndromes, and I did want to know what the chances were for me having a child with a syndrome so that I would be prepared for the medical needs of that child. All of my test always came back normal and I am very thankful for that. If there was a test for the nevus I would have gotten it and I would have been prepared. Instead I didn't even have a name for haleigh's birthmark until she was 6 months old. I would have been informed and would not have waisted so much time. But I would not change having her. If God came to me and asked me if I wanted him to go back and for haleigh to be born with out the nevus, I would tell him no. Haleigh is such a light in our lives and she has changed our family and the way we think, the way we do things, the way we are things, its all changed and we are better people for it. Yes I hate that she has to go through the surgeries and I would do it for her if I could, but I don't want to change her, I never think we shouldn't have had her, I never regret being picked to be her mom. God chose me to be Haleigh's mom and I am proud that he did.

Being Haleigh's mom has tought me that no matter how much we plan and no matter how much we think we have under control, we are not! God has is all where we are suppose to be and woth who we are suppose to be with. I would not try to change what he has planned for me and my family. Not only is that a complete untrust for God's plan, but it also would not work very well for anyone. I know I am where I am because this is where God needs me to be. And its not for me to understand, its for me to follow.

So do I regret having a 5th child, NO. Children are a blessing for the Lord!

Friday, April 1, 2011

Of course we are thankful

So this post is not directly related to Haleigh and her nevus, but More about children and family and health concerns.

Having a larger than average family these days gets you a lot, a lot of stairs and questions that is. I have never in my life told anyone how many kids they should or should not have. But I must admit I love big families and I do not understand when people choose to have just one child.

For some reason some people think it is OK to comment on how many kids you have, and not people your close to, because even if they do not agree with you decision they most likely respect it and therefore keep their mouths shut!
     Last Easter
My 5 and their 3 cousins (their cousins are in matching dresses)

I have gotten a lot of comments about my family size over the years, since I have gotten older I don't get the "your too young for all them to be yours" but I still get asked what I am going to do with "all them kids", If we are done, if we wanted them all, and less often I get asked if they are all healthy, because apparently since the dugger family has 19 kids and the last one was born sick, that means every family with more that 3 kids have a very sick child. ( I in no way believe that)!

So what do I say to these people so strangers? It all really depends on how my day is going, sometimes I say nothing, other times I joke and if I have had a rough day I get defensive. On those days my answers are, Yes I am a young mom, but at least I am not as old as you, of course my kids were wanted and very much loved what's your point. What are we going to do with them? Well we needed a maid so we had a girl then we needed yard work done so we had boys too. Are they all mine? Nope picked them up on the corner. How do we do it with 5? The same way you do it with 2 just 3 extra times a day!

The heath question usually comes across as "wow with that many there is no way they are all healthy" when I say yes actually they are all doing great and have a clean bill of health. Then I get "well be thankful for that" um yeah cause I was not already!? I don't understand how people can think since I had more kids that I was not thankful for the ones I already had.

In birth order Madalyn was the picture of a healthy baby we were and are thankful for that, Collin was a bit early and had asthma as a baby, we would not trade that and see thankful for him. Aden was early too and spent some nicu time, he put grew his problems too and we are thankful he did and for him. Landon was lucky we lived in a city with a major nicu that could handle him at 31 weeks, he is now almost 5 and we could not be more thankful he's healthy. Haleigh has had health issues and was early, she also has her nevus, but with all that she is a healthy baby and we are thankful all her health issues are manageable, but even if they were worse we would be thankful just to have her, she is such a light.

None of that changed just because we had other kids. And it would not change if we had a 6th child. That brings us to the "are you done" question. This one really gets people sometimes. I feel as of eight now that our family is completed. I felt complete after Aden was born too, but after Landon I knew someone was missing. I think we have very little to do with our family size. I believe God gives us the children we are suppose to have and even if we are on birth control or get our tubes tied or make our husbands get the big V, I believe we are going to end up with the family God has planned for us, even if that means raising children we didn't give birth to. And I am not sure what he has planned for our future.

I wish I could say that is what I tell others when they ask. Most of the time I say yeah! Or heck no I want 10 more just like these! And the truth is I feel our family is completed and so does Jason, we are thankful for all our children and if God was to think we (for reasons I would not understand lol) needed and could handle another child we would be thankful he had chosen is as parents again, but that would not make us any less thankful for the 5 wonderful, loving, healthy children we already have.