Expectations

I have friends that I have never met that have children that have exactly what Haleigh had. Born with the same type of Nevus. Some even born with them in the same location as hers. We support each other through tough choices. The good and the bad. They are there to answer questions offer advice. Or just to listen to me vent about people who don't understand. I don't know what I would do without them.

Before Haleigh's first surgery I saw pictures of their children before and after surgeries and their immediate transformation was clear. So when we took Haleigh for her first I expected that an was slightly disappointed when that didn't happen. With her second I understood it would be a slow process. 

Then we changed our course of action and decided to do the expanders. Our first one got infected. So when It was removed there was no Nevus removal and I was sad. Here we were surgery number 4 and nothing. No transformation, no big reveal. I was scared to do another expander, but we tried again and this time it worked wonderfully. 

I'm not sure what my expectations were for Haleigh this time. I was and am thrilled that the expander was such a success. I had thought all of her cheek Nevus would be gone and we would be left with another surgery for her lips and maybe nose. That's what was expected. I was nervous though that there wouldn't be enough skin to cover the cheek and I was scared that when I talked to the dr that he was going to say he didn't get very much. I was scared I was going to be disappointed again and we would have to do another round or two of the expanders. Much to my delight that was not what happened. 

Apparently I did an amazing job of expanding slowly. Her skin was even "stretchy" and of course he was able to remove the Nevus off her lips too. 

I was so nervous when I saw Haleigh. I almost didn't want to look. What if we had made the wrong choice with the expander. What if what some doctors say is true and her skin won't match and look natural. What if this was the wrong choice. 

Then they rolled her in. She scooted herself from her OR bed to her room bed and looked at me. And she looked like my Haleigh. Just as perfect as she was when she went into surgery. This was the right choice. She looks amazing. The risk of melanoma has plummeted to almost nothing. I thanked God for watching my baby through her 6 surgeries and for guiding our surgeon with his knowledge and skills. 

I couldn't have dreamed for better results. Although I'm still not sure what I expected Haleigh to look like after she was done. I surely didn't expect to be 95% Nevus free and I didn't expect her to look so much like herself. But I'm so happy she does. 

 

Some Medical Stuff

Children born with CMN are suppose to see a dermatologist from what I read at the least every year. Haleigh has not seen one in a while, the one we saw was 3 hours from here in Birmingham and she was not so nice, we decided not to go back as she brushed off all our concerns and never answered our questions.

All the information I have gotten has came from plastic surgeons that we have seen, her pediatrician, and the Internet that mainly being http://www.nevus.org/ and the Nevus Network. And of course other parents with children like Haleigh along with adults who have the same skin condition as Haleigh.

When I took Haleigh to the Dr about her asthma on Monday, he asked if we had been back to the dermatologist, because he has not gotten a report from her in a while. I told him the truth, that we had not went back and would not take her back there. He suggested since we had better insurance than we did before and could go with out a reference from him to call around and make an appointment. I am not sure why we really need to go. We are not going for test I guess its just a check up with them. She has an appointment for Tuesday or next week.

 

While we are talking medical, I talked to Dr C last night and E mailed him some pictures of Haleigh's eye. The corner of her eye where it meets the bridge of her nose, the skin there looks puckered, so with Dr.C's recommendation we started some Bio Oil tonight. She really hated it because I have to massage it in, but she will get use to it, I just wish she didn't have to. We also have to use more sunscreen. We have been using it, but I didn't realize she needed it even if we were just going for a car ride and she would not be out in the sun, but from the house to the car, UV rays still go through the tented windows. I never really thought of that. We know now though and are doing a better job with that too.

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!

Growing or Just now Showing??

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

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

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

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

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!