Softball Tournament

New Places, New faces, Same Questions

Haleigh playing with her cousin Natlie

Since the day Haleigh was born I have been asked questions about her nevus. Although at the time I didn't even know what to call it. I also didn't know what to say, or what to expect. I did know that no matter what the spot on her face turned out to be that as her mom I would always protect her and that her family would accept her no matte what it was. Again at the time I didn't know anything about it.

We have gotten lots of looks, stairs, and questions over the last 2 and a half years ( yes that is right 2 years!) some people have been very sweet in asking in a very gental way, others have been rude and some out right mean! What I have learned though is that most people are just like I was the day Haleigh was born. They have never seen a child with a large nevus any where on the body let alone the face. They don't know what it is and they really do just wanna know. And most of the time I don't mind answering a bunch of questions, to a bunch of people, it brings awareness to nevi and because kids like haleigh are so rare that is a big deal.

I feel like I have really gotten comfortable at the girls soft ball park. There are new famalies that have come in, but most everyone knows who we are and who Haleigh is and they know they can ask me questions and they don't stair. Well my boys started playing at Westside Base Ball Park and I feel like I should put up info flyers so people will stop looking at us like we have extra arms or something.

I have been asked by at lest 20 people this week what her condition is, and I have explained it to everyone of the adults, the kids that have ask I just say "she had surgery" tonight I told about 6 kids that, then they wanna know what kind of surgery, why she had it, I didn't let them ask a third question. I told them a face surgery and then to remove her birthmark. I didn't want to know their 3rd question so I asked them to please move so we could walk by (we were in the bathroom) and they did.

These are the same questions we have been dealing with for 2 years and while again I don't mind answering the how is she and when is the next surgery questions, its so mentally hard to go through the last 2 years 20 times in a week. Its even hardrd to sit and know there is that one person that wants to ask but never does so they sit and stair at you for 3 months! I always wonder what that one is thinking.

And again I know these people really do wanna know, or they would not be asking about her, they would just make comments like the man in target last summer who told me I needed to wash my kids face before taking them to target. He was very embarrassed when I told him it was a birth mark and no amount of washing was going to help it (and that maybe he should think before he speaks!) I could have handled that better for sure, oh well.

The point is that I am tired and our journey has just started. I know haleigh is a strong girl, God would not give a nevus to a weak person, these kids are amazing! I just wish she didn't have to be!

A Little Traumatized

I believe Haleigh is a little traumatized from her surgery. I was really hoping she was still young enough to forget about it almost as soon as it was over, we were not so lucky!

I want to say Haleigh is doing very well from a physical stand point.

When we skyped with Dr. C last week he said Haleigh look great, and that since she was leaving the glue alone, we could put triple antibiotic cream on it and that would loosen the glue so it would flake off! We have been wanting the glue to fall off so I was excited. We had not out any thing except sun screen on her face and I did that while she was doing other things too, so she was not paying att to me anyway.

When I first tried to put the cream on Haleigh's face she had a fit! Kicking and screaming and yelling for her daddy, for her may may! Help help she was saying! I felt so so bad, Madalyn held her hand and I quickly put the cream on her. I felt so bad for her, I decided I would wait for her to be asleep before I put any other cream on her.

Then saturday came and I had not choice but to use sunscreen on her. Landon held her hand as she cried. He is just 4 so that made me wanna cry that she wanted her littlest big brother to hold her hand.

She does not want anyone to wash her face or bathe her, she dosent want is to wipe her if she gets dirty, she said she'll do it her self. But ya know she can't always do it good enough and when I have to step in age cries for someone anyone to hold her little hand.

She on the other hand does not want mama to hold her hand. Mama is the one putting on all the creams and doing all the washing and wiping, so she will not hold my hands.

I was a little sad when she would not let daddy put on the sunscreen and hold mama's hands but then I realized she just trust me to handle her face and everyone else is just for hands!

I tried to just look and see how much of the glue was peeling off today and that was as bad as trying the sunscreen so I am just waiting for her to sleep.

I love her so much and I just wish she could have started earlier and was finnished before she learned how to remember anything longer than a day or two!

Please continue to pray for Haleigh and our family during this time. We know that God will use this for our good and His glory.

Behind the Glue

Today is 2 weeks from surgery, and Haleigh is doing awesome. When she first came out of surgery she had stitches with glue on them and tape over the glue! We wanted to be sure it didn't come open, it held really good and when we took he to have her stitches out she still had most of the take on, I only saw a small bit of her stiches. When they we're removed more glue was applied, but no tape! So I could see her but it still was covered a lot. Today a week after stiches removal some of the glue has chipped off and under the glue is a very thin line. I know its a scar, but you can't really see it. I was actually expecting it to look more red and I guess more like my c section scar did 2 weeks after, that is the only surgery scar anyone has for me to compare to.

The line is perfectly straight, and very thin. I can not wait until all the glue has chipped off, its starting too and kinds looks like icing off a cup cake left on her face. As soon as the glue is off we are going to have family pictures made. Everyone already has their clothes so we are all set. Its been a while since we had a good family picture made. And Haleigh is not in it! I can't wait to show them off!

Reactions

Haleigh, at a birthday party,
almost a week after stitches being removed!

I did a real poor job of preparing my older children for the way Haleigh would look when we came home from surgery, I really didn't know how she would look myself, but I should have called ahead and talked with them. Haleigh was swollen and bruised when we got home. Her eye was purple and her face had tape over her stitches, the tape also had some blood under it so it looked bad. I think everyone that reads this knows Haleigh is the youngest of 5, so seeing her this way was hard for the other 4.

Madalyn, Age 12

My oldest is 12 and she cried and wanted to know if she would be swollen for a long time, and why her eye was puffed and purple. She also didn't understand the tape at first and thought the whole area was scaring, my 4 year old was just asking who hurt Haleigh and I told him no one the Dr did surgery to help Haleigh and she was going to get better, all he heard was that the Dr did it and we then had to explain exactly what the Dr did to calm him. The two older boys were at school when we got home. When they came in my 10year old said look Haleigh has a black eye like I had. He got him at baseball practice, so my 7 year old them said, who hit Haleigh with a ball, I am going to bust them! Lol so I say them down and explained exactly what went on during surgery and why she had a black eye and why her face was swollen and had tape on it.

I so wish I would have called and told my mom to put me on speaker phone, to explain what was going on to them. I believe they were scared for Haleigh and thought someone hurt her. We have decided that because they have asked so many questions we are going to take them with us next time, and stay the whole week between surgery and stitch removal. They want to meet the Dr and see where Haleigh goes. We will treat this like vacation, Haleigh felt great the day after surgery so our plans are to get a city of Atlanta pass, and starting the day after surgery, explore Atlanta with the kids. Friday or Saturday we will take them to 6 flags over Ga that will be 3 days after surgery and Haleigh was her self for the most part by then. I think this will be good for more than one reason, it will be good for the older kids to see where we are when Haleigh has surgery, so when we go and the don't go they will know where we are, 2 the older kids need a vacation and this might be our only chance to go, 3 Haleigh needs to have

Fun when we go to Atlanta not just surgery or she is going to start to fear going, and while she will never think surgery is fun, she will know that once that part is over age get to do all this other fun stuff!


Haleigh is doing really good, she is back to her normal self and is the best kid!

Making It Fun

We are trying to make the trips to Atlanta as fun as possible for Haleigh. When we went back to get her stitches removed we took her on little bit of site seeing. She had a great time!

 



11Alive News in Atlanta

Below is the link to the 11Alive News clip on Haleigh and Dr. Conners. Please watch it and share it. Our prayer is that this will bring awareness not only for Haleigh but for other children that are in need.

http://www.11alive.com/video/default.aspx?bctid=826468935001

Thank you 11Alive, Dr. Conners, and everyone else for their prayers and help!

Haleigh's First Surgery

Haleigh had her first surgery yesterday, she did really good, there were no problems through out surgery. A few details before I start telling our story. Haleigh was out to sleep with grape flavored gas, then given an IV and a breathing tube, surgery was 2 hours long, the piece that was removed was 5cm long and 2 cm across. He closed with normal stitches not dissolving ones. He gave her a nerve block that lasted about 8 hours, although I think it lasted longer than that.

On to the personals.

We left mobile on Monday the 7th at 6am local time. We didn't dress Haleigh, just changed her diaper and put her pj's back on her. We stopped in evergreen to pick up Jason's mom, eat and fill up. We didn't stop again and Haleigh slept all the way until we were about 30 miles out side of Atlanta. That is when we stopped and got Haleigh some lunch, Jason and I got a snack we were just not all that hungry. And filled up again. Then on to the hotel. I have to say the hotel was very very nice, but unless it was donated to us again we would not choose to stay there, even if it wasn't 350 a night. There was nothing wrong with it, we were just kinds out of place being at a hotel where they wanna do everything for you from opening the car door to your room door. They even knew our names as we walked out the door to get dinner! It was very nice, we are just use to doing stuff our self.

We changed Haleigh's clothes and went to meet Dr C. We got lost 3 times with the GPS, because Jason kept getting in the wrong lane and we would have to turn and then go another way and so on I times lol!

Everyone at Dr C's office was so so nice. They gave her a stuffed dog that Haleigh has been carring around with her ever since. We met Dr.C in the waiting room then went to an exam room, he was real good with Haleigh he played with her and answered all of our questions, and never made us feel that our questions were not important. The news was there setting up and I talked to them and did good with no tears until they asked if anyone had ever been rude to Haleigh or me, and what kind of questions we get in public. Ugh... That is a question that in the past that made me mad and I would always answer with a don't hurt my baby mommy voice. But I had already made it through surgery talk, talk of cancer, and talk of how we were turned down by other places. So when we got to how other kids are mean, my mind rushed to kindergarten and thoughts of Haleigh sitting by herself and I cried. They have me a min and then I furnished the rest of the interview with no more tears. I will let everyone know when its on line, it has not aired yet.

We left there and it was time to eat dinner, so we did that and then went to a cool mall, that was right across from our hotel, it was underground as well as above making it like 5 stories of stores, stores like Tiffany and company! We let Haleigh pick out a cupcake and then we headed to the hotel hoping to turn in early so we would not be late for surgery the next morning. Haleigh feel asleep about 10.30 Atlanta time.

We had to be at The surgery center at 6 Tuesday morning, so we left the hotel at 5.30 the surgery center is right across the street from the Dr office, and connected to the children's hospital, that is connected to north side hospital. We got there a few mins early and checked in at the wrong desk so by the time we got to the right desk we were right on time. They were all super nice and made us feel comfortable and talked to Haleigh in a soft voice. We didn't wait long before we were called back to be weighed and to get her blood pressure and stats done. She was at 95% oxygen for a while so they have her a breathing treatment then she was at 100%. We then went to per op waiting area that was a private waiting room. The nurse took Haleigh to pick a prize and the Dr that put Haleigh to sleep came and talked to us then listened to Haleigh's heart and lungs. We changed her into a hospital gown and socks, I put a gown over my clothes and a hat on my hair and carried her into the OR. There were about 15 people in there and Haleigh got scared because they were all wearing mask. Dr. C took his off to make Haleigh feel better. I laid her on the table and held her hand, she really didn't like the mask on her face but it took 2 deep breaths in and she started to fall asleep, I then had to leave her. I did good and only cried a little.

We were taken to post op and was given a timer. It went off after an hour, they called the or and we were told everything was going great and Haleigh was doing wonderful. 55 mins later Dr. C was out telling us she was in recovery and would be there for about 20 mins then they would bring her to me in post op. She was still sleeping but breathing all on her own age woke up for a min the laid her head down and slept for another 45 mins. After that she wanted me to hold her and her binky and cup. After the nurse saw her drinking age went over everything with us and gave Jason her pain meds to get filled, he ran down stairs and did that while we waited our 30 mins, after drinking before we could leave. By the time Jason was back we were ready to go.

We went to the hotel, Jason dropped me and Haleigh off while he went to get is something for lunch, since we had not eaten that morning and it was 11.30 already. The hotel was super sweet and helped me up to my room with my key, they also told me any thing we needed to just ask.

Haleigh did good through the day and night Dr. C came by the hotel about 4 to see her and was very helpful with some questions we had. We went to see him Tuesday morning and decided she was doing so well, we could head back to mobile. The weather was progressively bad, so we decided that since we had to take Jason's mom home anyway we would just stay with her for the night. Headed home in morning!

Haleigh

Haleigh after Surgery #1 with stuffed animal Dr. Conners gave her!

Haleigh & Dr. Conners

Haleigh with Dr. Conners at her pre - op appointment
the day before her first surgery in Atlanta!

Last Day

Its our last day before heading to Atlanta, everything is going as planned, except it is cold and windy this morning so I did not want to get Haleigh out into it, so we are missing church. I am going tonight Jason will be home he can watch Haleigh. I hate her not going though she loves going and she asks about her friends there when we miss, if she knows we are going to church she will cry if I leave her home, so let's hope the wind dies down.

I pretty much have everything ready to go. I didn't want today to be stressful washing clothes and packing so I have been doing it all week, and now I really just need to go grocery shopping for the kids so they can eat while we are gone and so my mom doesn't have to shop with them, and get our personal soaps and shampoo and tooth brushes in our bag in the morning and we are all set.

I am also going to vacuum the truck again and fill up on gas when I go get groceries, no way do I wanna have to stop at 530 in the morning to get gas.

We are stopping in evergreen in the morning to get Jason's mom, she has taken off work and decided to go with us, so we have another support in Atlanta with us. Jason's sister is driving her to the gas station in evergreen to meet us, and even though that is only 100 miles from here I will probably go ahead and fill up again since we we already be stopped, and getting gas that way will make it less painful to fill up, since gas is 345 a gallon! I did estimate gas to be 3.50 a gallon when I budgeted the trip, but I never thought it would be that much, I did it to give us a buffer zone, that zone is now very small. But we did get 2 nights hotel free so its all going to even its self out! And who knows maybe the price of gas will drop while we are there (hey we can all dream).

Haleigh knows something is up, we have been telling her we are going on a trip, and I have let her help me pack her bag, she is too young to know what surgery is though, so I feel like I can not prepare her for anything, that is about to happen. She does not mind the doctor though so I have said we are going to see the Dr she said 'tell Dr hello' its very cute. Landon my 4 year old is the only one of the older kids that doesn't understand why he can not go. He wants to take a special trip too he said, I told him they we're going to do surgery and explained what that was, he then told Haleigh the Dr is going to cut you, she told him to hush and I cut you lol, she then pushed him down. But Landon is not happy about is packing our bags and leaving him at all!

Well, I better get dressed and head to the store, Jason is getting off half a day so I can do this alone, before Aden's practice at 3 this afternoon, yes they practice on Sundays!

The Power of Prayer

How many times have you said oh I will be praying for you and then never do? I know I have in the past and I now feel bad about it, I never said it as a lie, as I had every intention on praying,but I would forget because praying was not something I did very often, mainly only when I was at church or when I wanted\ needed something from God. The past few months though having being in church 3 times a week and learning how to pray and why its important, I realize all the times I should have prayed and didn't. I do now pray for others more than myself, and while I do not shy away from asking for prayers, I do realize how somethings are more important than others. And its not all about me!



Haleigh and her Prayer Quilt



My church has been amazing with prayers for my family, and tonight I got a gift for Haleigh that made my heart full, a lady named Ms. Barbara who has a grandson in the nursery with Haleigh made her a prayer blanket and have it to me tonight.

I was picking up Haleigh from the nursery and didn't get a chance to look in the bag until she was out the door already, so I waited until I got home. Its so cute I love it. I posted pictures on my facebook of it with Haleigh and I have plans on a thank you card for her.

She prayed for Haleigh while making the blanket, then after it was done she held it and prayed for Haleigh. We are taking it to Atlanta with us and since she can take a blanket to the O.R. With her that will be the one. I am going to make sure she know just how much this blanket means to me. I can't think of a greater gift than the gift of prayer.


I believe in the power of prayer, I have faith that God gave Haleigh to me because he knew I was strong enough to get her the help she needs and to not back down, he knew I would follow the path he has laid before Haleigh, and I believe I am walking the path he carved for me. I have faith God lead me to the doctors in Atlanta, and that he will be guiding her surgery. I have no doubts in what we are doing is right and no doubts that its all going to go good and be amazing!

News from Atlanta

I got a message from Atlanta today, I want to clarify that when I say Atlanta that is in general anyone that has anything to do with Haleigh's care in Atlanta, there are more than one groupe of people helping up there so I just call them all Atlanta.

So back to my message, I have to take haleigh to see her pediatrician tomorrow to get a letter from him saying that she is healthy enough to have surgery and be out under, lucky for us she is! So I know we have no problems there. All the other stuff will be done when we get to Atlanta Monday.

Emergence Gifts the foundation that is covering all Haleigh's surgery needs is also taking care of our parking at the hotel they got donated to us. Parking is 26 bucks a day! That is really expensive just to park your car! The hotel is Also trying to get our food covered, that was a huge surprise to me, I am hoping that if we get no other meals we will get dinner the night of her surgery that way jason does not have to leave and go get is food. But if not it will b
They are also excited about the interview with the news, its a big hope of ours that this interview will help get the word out about Emergeence and will boost their donations and in turn they will be able to help more childen like Haleigh, am excited to do this interview, but also nervous, because I tend to cry at the beginning of telling haleigh's story to new people, but I told them to just edit that out.