Photos From Atlanta Trip 2011

Haleigh ready for her pre-op appointment

Haleigh with her gift from the hospital

Dinner in Atlanta

BELOW ARE PICTURES FROM THE CHILDREN'S ART MUSEUM IN ATLANTA

Creating her masterpiece

building blocks

Fishing with Dad

Milking the cow next to the banana slide

Haleigh's 2nd surgery

Haleigh had her second surgery on 12-29-201.

Haleigh did very well through her surgery. This one like the last took about two hours, I really love the staff at the surgery center, they are all so nice. I realize that is part of their job of taking care of us, but they seem like they really care about us. I feel like we are receiving top care. And of course our amazing Dr.C who is top career.

One thing that stands out for me about the center is they do not take your child from you crying. There is no pain involved in the before care. I carried Haleigh to the OR and held her as the nurse explained to Haleigh how she was going to blow in the mask and breath in.  Haleigh was not scared and went to sleep holding my hand. They started the IV after she was asleep and i was in recovery. Everyone has their own recovery waiting room where they bring in your child after surgery. You child never knows your not with them, its perfect.

Haleigh's surgery was at 730, she was in recovery with us us at 10. We left the hospital around 12. Haleigh slept a lot and  has needed some pain management, but was eating and playing between naps.

We could not have hoped for this to go any better

Happy New Year!

Merry Christmas 

&

Happy New Year 

Gearing Up For Atlanta

With Christmas just days away, I find myself getting ready for two major days in out lives.

Christmas day comes first and I am excited that it does, because that means Haleigh will get to enjoy her new toys from Santa before surgery. She is so excited seeing the lights on the tree and the houses as we ride by. She misses nothing!

The second comes on the 29th with her second surgery. We will head to Atlanta on the 28th, she will have surgery on the 29th and we will return home the 30th. We thought about staying the week but since gas as fallen in price these past few weeks we feel it would cheaper to come home. We will return to Atlanta the following week for stitch removal and stay one night. 

We again got our surgery hotel night donated to us. I am so blessed that so many are helping us help Haleigh, many that have never met us! I hope everyone involved knows how thankful we truly are. 

Haleigh baking Chocolate Chip Cookies for Santa

We had Haleigh's pre op appointment last Friday. Our new primary doctor felt we should get a CBC even though Atlanta didn't require one. I agreed that it wouldn't hurt anything. I am glad we did it was found Haleigh was anemic. Her iron is 10.8  normal is between 11 and 14. We started her on iron supplements and it will not keep her from surgery. Surgery number has to be 10.5  and above. So we are all set there as long as she's on the supplemental iron her level will not fall. Everything else with her check up went awesome. Our new primary care is wonderful.

Please pray as we travel as well as for the surgeries and stitch removal to go smoothly. And as always that Haleigh will be peaceful and that any nerves will be calmed. Again that you all so much for everything you do and the prayers that have been lifted for us!

Education and Awareness

Some things get a lot of attention, that brings awareness and public education on medical conditions, you would otherwise never know about.

Think about it, no one really knew what autism was unless you had a kid with it until Jenny Mc carthy (I hope I got her name right) wrote a book about it and went on tv shows. She stood up used her voice and spoke.

Its time we stand up!

Early Christmas Present

Happy Thanksgiving & Merry Christmas!

We got an early Christmas Present!  Haleigh's surgery has been scheduled in Atlanta for December 29th, not sure on a time yet.

They have not received the letter from the dermatologist here in town, but there may be a reason why, I didn't realize the office in Atlanta moved so I believe they sent it to the wrong address. I did however call the dermatologist office and give them the new address, the girl sounded confused at best. I tried to call back but they were closed for the holiday . My plan is to now go by there Monday and be sure they have the right address and get a copy of what they sent to take with me. 

I will also be making Haleigh an appointment with her primary care doctor to get clearance for surgery soon. That is really just to make sure no health problems that could interfere with surgery. I do not see any reason that should be a problem. I will take her the first week of December because exam can not be more than 30 days old. Will update you soon.

Blessings & Worries

We took Haleigh to the dermatologist on Tuesday. We saw a PA first because to get a fast appointment that is who our appointment was with. Our new primary care knew and said this would be fine. If the PA ever feels they are out of their element they get the MD. This is what happened.

The PA said she had never seen a facial CMN before so she wanted to get the doctor. I was completely fine with that and was prepared for it. The doctor was really nice, and said while she has not seen many cases of a facial CMN she had seen them. This was no surprise because it's rare, so there aren't many to see.


The doctor was impressed with her surgery and said we had a very skilled plastic surgeon. She was however concerned with one area by her lip that is so much darker than the rest of the nevus and wants a biopsy done. Haleigh would need to be put to sleep for the biopsy, which they do not do there. They recommended us to a plastic surgery center here in town, but said we might be happier with the doctor we already had.



It was time to call Atlanta.



Haliegh with her cousins.

Everyone there is so understanding. I was told they would be able to do the biopsy with her next surgery. Because of the scheduling problems we have been having needing a biopsy is a blessing and a worry all in one. It puts Haleigh surgery from a elective to a need, so schedules will not be as big as a problem. This is a huge blessing, but the fact that she even needs a biopsy is a huge worry for me. We always put sunscreen on her, but the fact remains that her chance of cancer is still greater than mine. That's the part I hate. I will handle everything else, but I don't want handle that not now not ever. But we also know God has a plan and through Him all things are possible.

I should be hearing when her surgery is after Thanksgiving. The dermatologist sent Atlanta a letter along with the picture with the darker spots circled. After Atlanta receives this we will be scheduled.

Happy Birthday Haleigh

Haleigh turned 3 years old on the 10th of this month, its hard to believe she is already 3 years old. I know they grow so fast and Haleigh was so small for so long that its nice to see her on the growth chart. My older kids had a fall festival the day of her birthday so we spent the day at the school having a blast. She got a cup cake painted on her face, and the #3 on her head. She was telling everyone how she was 3 and it was her birthday.

We asked her what she wanted for her birthday she said "Santa" so naturally we took her that night to the bass pro shop. We saw Santa and had all the kids picture made with him. Haleigh was a little scared at first, but she was able to tell him that it was her birthday and that she wanted him to bring her a baby, and a baby car seat. We had a great time there making the crafts and playing with the train sets, we then ate there. After you see Santa they give you free kids meal tickets so it was nice to get to go eat there. They brought out a huge brownie with ice cream and we sang Happy Birthday there. We got home around 8 and boy my kids were tired. They went to bed so easy.

We took Haleigh to a new primary care doctor today, I really liked her. She agreed to check into getting us an appointment with the doctor we want to see, well come to find out even with a doctor making the appointment for us, its going to take almost a year to get in over there. The new primary care Doctor did not feel it was a good idea to wait another year, and neither did I. She tried to make us an appointment with the dermatologist that she sends all her patients to, but they were closed because of the holiday, so we will have an appointment on Monday, they did leave a message for the doctor though saying Haleigh needs to be seen ASAP. 

The doctor gave Haleigh some antibiotics because the area on her nevus where Haleigh has scratched looks infected, I have been putting meds on it, but she said since Haleigh's nevus is not normal skin and because of the hair it makes infection easier to get. That along with my concerns with the changes the Nevus has made over the past month made the new doctor very upset that our old doctor would not send us to someone in Mobile, she agreed that the doctors at the children's hospital were good, she also believes that the doctors here will be more than able to treat Haleigh, and if the need ever comes to send us some where else she feels the doctor we are going to see can handle that too. I believe she is right and I am excited to follow her advice.

Haleigh didn't need any shots today, she is in the 22% for weight and the 80% for height. She is healthy other wise and doing all the things a normal 3 year old should be doing. The doctor was excited about her being potty trained fully and not on a bottle. I was shocked when she asked about the bottle!

I will be sure to update after we see this new dermatologist, next week.

Let's Get The Word Out

Thankful

November is the month we all look over our last year and realize how much we have to be thankful for. I am no different in that. 

Christmas 2010

I wish I could remember everyday to be thankful for all that I have, but the reality is I don't. I get annoyed at the house and forget there are those that have no house. I get angry at my kids and forget how blessed I am to have all 5 of them. I get mad at paying the insurance co pays, when there are those that can't afford a doctors visit at all. There are so many more examples to this that I am sure you could add to my list. 

I wonder what world we would live in if everyday we all thought about everything God has given us to be thankful for. I have to say I would like to live in that world. So when December comes don't forget to still & be thankful for all that God has blessed you with, not only in the holiday season but all year long.  

UPDATE ON HALEIGH:

Halloween 2011 "Nemo"

I found a dermatologists that I have researched for a while here in Mobile. She seems like a great doctor and is in with a plastic surgeon, not saying I would change surgeons but they are in Mobile so I called to see about an appointment. They are not taking new patients with out a doctor referral. So I called Haleigh's primary doctor to get one. I have never  had a problem with them before, but this time he said he will not allow us to see another doctor and we need to go back to Birmingham. 

I was a little taken back. I explained that I can never get in touch with the doctors there and that they never call me back, along with how rude they are. On top of the extra wear and tear on the cars doesn't make since if there is a doctor right here in Mobile. While I respected his choice I am Haleigh 's mom and have the right to decide where we go for treatment. I was told I have the right to take her where ever I want but that he would not help us get in with this other doctor and to go back to Birmingham. I am glad I was just on the phone because I was so so mad. 

I then sat and tried to think of what to do. I will not go back to Birmingham they did not treat us with respect while we were there and I have made calls to them about different worries of mine, those calls have never been returned so I have had to rely on Dr Google for input and that is not fair to me and Haleigh.

So I decided Haleigh needs a new primary care doctor.  

Finding a new doctor is scary to say the least, but I know Haleigh needs to see a dermatologist and I know we can not get the kind of care I want in Birmingham so I called around and researched some doctors. Since Haleigh has a birthday next week we have an appointment for her 3 year check up with a new primary care doctor. 

County Fair 2011 (Haleigh w/ Stormy, Maddie's friend)

I am scared and nervous to take her somewhere new. She has seen the primary care doctor we are leaving since birth, but I know this is right.

I am thankful I live in a county where I have a choice on my daughters health care. I am thankful I have insurance that allows me choices with out questions. 

Long Awaited Update

Hey everyone I know it’s been a while, but everything has been going so well that there has not been much to tell. And we are so excited about that.

So some random things first to catch you up:

Haleigh is completely potty trained she did so really quick once she got the idea, so diapers are out of the house. Haleigh is also very independent so much that its sometimes dangerous, she wants to cross the street by herself among other things that its just not safe for her to do. It's challenging but great at the same time.

Hair Cut!

We had Haleigh genetic appointment this week. He is an awesome doctor and we love him so it was bitter sweet when he said Haleigh didn't need to come back to see him any more. He did reassure us that we could call anytime if we had any questions and as always if we need any help we could call him.

The reason I love him is because he is so positive and up lifting. He assured us again that if we were to have more kids we would not be at any higher risk than anyone else for having another baby with nevus. By the way the chances in case you forgot are 1%.We are not planning more children but God's plans are not always our plans so its great to know that.  So we have been discharged from GI and genetic clinics.

The other Dr we are suppose to see is a hard one. Haleigh is suppose to see a dermatologist once a year at the very least. We have one in Birmingham, but we didn't like her at all so we have not been back to her. I have called a couple in town and I left a message with one of town. However, when I ask if they see children with large nevus they either don't know or say they would need to see us before they can talk to us about that. They are off my short list. I really don't know what to do about it. Our plastic surgeon sends everything to a lab so we don't need that just an exam. We are still in limbo I guess on that one.



Fall Ball 2011 - Madalyn

We have been working close with Atlanta. We don't have a 2nd surgery date yet. We were hoping to have had surgery already but we are having major scheduling problems. I hope they are figured out soon and as soon as we know I will post it. Just keep praying. We are all on Gods schedule. It is just very difficult to wait and to schedule everything else going on!



Collin - Fun at School

We are also still working on the cookbook. With all the kids in school and sports we haven't had as much time to work on it, but are going to start it up again next month.



Landon - K5

Aden - Fall Football '11



Wonderful Summer

We are having a wonderful summer this year, Haleigh is at such a fun age, she loves the beach and the splash pad, and i am sure she would love the pool too, that is if we had one.

We live close to the beach depending on where we want to go it takes 45minutes to an hour and a half to get there, there whole time Haleigh says, mama we are going to the beach! She is such an out doors girl.

We had a great 4th of July, BBQ with family, then fireworks at the battleship. Haleigh was not even scared of them. She actually called them bubbles, so funny!

Yesterday we took her out on the boat, she cought 3 sharkes, they were babies so we had to throw them back, but she touched them and was loving being out on the water. I thought she might be scared a little, and she may have at first, but didn't show it and was walking around the boat in no time, and liked the riding out to the old dauphin island light house.

We are using lots of sunscreen, and we have had her hats on. So even with all the sun time she is still very much protected.

We are starting to think about her next surgery, but its will be this fall so the summer is ours!

Summer Days

Quick update on Stitches

I wanted to let everyone know that last Tuesday, Haleigh's stitches in her chin were removed. She did really well and all is healing very nice. We were able to take her to the splash pad today and to the beach Monday. We had been meaning to keep the stitches dry except for her baths, so this was a real treat for her, she is part fish i think!!

The Emergency Room X2

On Sunday we didn't go to church, we had a family reunion to go to, we had been looking forward to it for a month! And we had a really good time while we were there. The kids love it there and I am going to take them back this summer! Anyway the aunt's house we were at has a pool, and my kids are half fish, so they were all having a great time! Haleigh was jumping off the diving board and was doing wonderfully, her suite has a life vest with a zipper on it, and when she jumped in for like the 50th time her zipper popped up and the force of it gashed into her chin, she came up bleeding.

Off to the emergency room we go. I went to the closest one seeing that we were about 45 mins from the closest one, even though its my least favorite and where Haleigh was born. So we get in the back pretty quick and we find out they can't use the glue like we had hoped, I asked them to put the stitches closer together, but they said they would only put what was needed to hold it together. Ugh! Another strike against that hospital! Any way she "needed" 5 of them. Its on the underside of her chin so even though its going to be a scar no one will be able to see it unless she is looking straight up. We were out of the hospital about 3 hours after we got there.

We kept her stitches clean, used antibiotic soap and band aids with antibiotic ointment in them and letting it air out while she slept.

Tuesday morning she got a bath and I put on her band-aid, I noticed her skin was slightly pink so I decided to pick up some antibiotic ointment so I could do a good rub in, when we got home. We then took the kids to lunch and to the bass pro shop, they are about 45 mins from our house. At lunch Haleigh got food all over her band-aid, so I decided to take it off, I didn't have another one but I knew no band-aid was better than one that was trapping in foods. When we took it off there was a blister. And that concerned me quite a bit. I have 5 children and 4 of them have had stitches, Haleigh had stitches after her surgery too. None of them ever looked like this. It was 3PM so I was not making it to Haleigh's peditrician office that day, we decided to wait and see if it looked worse we would take her to the ER, the same or better to her Dr in the morning. Well we got home at 530, and the blister popped, she screamed and when I picked her up she felt like she had a fever. So off to the ER we went. AGAIN!

This time the ER is packed! On arrival her temperature was 102, we are given Motrin to bring down her fever and we wait for 2 hours in the waiting room. While there I leaned that they actually have 2 areas in the ER. One is the actual ER where you see a Dr. , the 2nd is called fast track where you are seen by a nurse practice, now don't get me wrong I have nothing bad to say about them, they are the ones who took care of my babies in the NICU (after the 1st few days) but I think a doctor should have seen her! Well no doctor saw her the 2nd night either we saw a physicians assistant and I have no problem with them either our peditrician's office has one that handles all well visits. We waited 3 hours to see a PA for 10 mins! He took one look and said yeah looks infected wait right here I will get you a RX, came back handed me a paper to sign have me a copy and her 2 Rx's. One is an antibiotic by mouth one is an ointment. Then he said to bring her back in 3 days, for what I asked? For them to recheck her and to take out her stitches. Um.... No thanks I will take her to her doctor on Friday!

So now its Thursday and it still tooks awful! So I am hoping her Dr can shine some light on how she is healing.

Assumptions

Sometimes when you over hear people talking your can make assumptions about what they aretalking about, and most times you would be wrong. A lot of times what you over hear are people talking about what they have assumed has happened in the 1st place. This is how a rumor is started. This is how friendships end and how adults get their feelings hurt.

We recently learned that we are being talked about by people making assumptions about things that are truthfully none of their business. I have tried to clear things up simply by a statement, but I can not stop thinking about how people that were suppose to be our friends are acting, so while I am not going to use any names I feel I must lay somethings out, even if they are our private business.

In January of this year 2011 we like a lot of Americans got our W2 tax forms in the mail and our 1099's, early Feb. We filed our taxes 2 weeks later we got our refund and decided to buy a boat. Why? A few reasons actually 1. It was a great deal, 2. It was something we had been thinking about for more than a year. 3. We knew that we would be dealing with Haleigh's surgeries for a while and we would be unable to take a real family vacation because of it, we also knew we could take the boat and go camping and have a ton of family fun that way for cheaper than say Disney World, 4. We wanted it. So with all that we got it! And we are so glad we did.

A couple weeks later my van motor blew up and because of how old it was, we needed to decide to either rebuild the motor and risk something else major going wrong, or crushing it and buying another used van or SUV. After finding out the cost of the repairs and what all else was actually wrong with it. We decided to buy an SUV, we put it on hold while we went for Haleigh's 1st surgery. 3 weeks later we took most of what was left and put down on our SUV. We have 5 kids so a car was not a choice for us, and we had to have a vehicle that fit is all with seat belts. While jason has a truck, it seats 5, there are 7 of us! If we would have know our van was going to mess up, would we have got the boat? Not at that moment, but eventually yes we would have.

There is a lot of talk about what we choild have done or what they would have done with that money, while raising money for surgeries for our daughter and something no one has thought of is, our income tax returns no matter how big or small has always went to all of our kids, not just one. The boat and SUV is something they all wanted and needed. My kids need to have fun, my kids deserve to have nice things, and have a way to get to and from the places we need to go without sitting on someones lap!

None of the money we used to do these things were raised for Haleigh's travel. Therefore is really not anyones business, and if anyone has problems with the way we spent our income tax money then I feel you should just withstand from donating to her.

I have never assumed how anyone is paying or has paid for anything, and the fact that I have to justify everything we did and see doing to people who I thought were my friends has hurt me more than I have been in a long long time.

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.

Chicken 4 Haleigh

Tuesday Night we held a fundraiser at Zaxby's, they were awesome, and I thought we did really well, 200$ in 4 hours and all I had to do was make some milk shakes, and clean some tables! But the marketing rep that was there said it was a super slow day, and she was upset that we didn't make more money. So she offered to let us have another night at a different store! I can't believe they are so willing to hand over 10% of their sales to us more than once! We have set a tentative date for the last Tuesday in June. I never knew how giving and open our community was until now. We also made 70$ in tips last night.

Haleigh having a great time!

We greatly appreciate all of our friends and family that came out to support us and help us washing dishes and welcoming people at the door! As well as everyone who came and ate the food.







Marilyn, Haleigh's NaNa, getting balloons

Crystal and her children (Haleigh -held, Collin, Landom, Aden, & Madalyn)



Milkshake team....lol