8 days

In 8 days we will be headed to Birmingham for surgery to remove a good bit of Haleigh's Nevus and the expander.

I took her today for her pre op appointment and 5yr check up. She's 37 inches tall and weighs 36.9 pounds. She is very healthy and we renewed her yearly referral to plastics. Her dr is very happy with the way her expanded skin looks. I have to say I am as well. No openings, no strech marks. It just looks perfect and healthy. 

I am excited and nervous and scared. I believe Haleigh is having the same feelings. I wish I could do this for her. We will be doing a small fill today. 10-15cc sounds good. 

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.

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



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.

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.

The Birmingham Trip

I realize this blog entry is late I want to ensure you the reason for its lateness is my anger not forgetfulness.

The doctor in Birmingham is a plastic surgery specialist, he has 2 offices the one we went to us at Children's South in Birmingham. It is a specialist center so one day thee is plastics in there the next day may be GI. So calling them for an answer to question falls on who ever is there that day. I never know if my message ever got to the right person, I think its crazy!

So back up a bit, we were contacted by Dr Grant's office through a foundation we applied for. Haleigh was turned down by that foundation because we were too poor, yes you read that right, we had alabama medical and you can not have that or qualify for it to recive service through them, although if your really poor and live in Mexico there is no problem they are more than happy to help you then, guess we are just poor Americans!

Any way they have all our information to Dr grant because he takes state medical. His office called me got the paper work and set an appointment, that appointment was December 28th,2010. We road up and came home in one day, using the money we raised at the ball park to go on and it was a compleate waste!

The Dr had the bed side manner of a stale piece of bread, he told me he would do the surgeries if I wanted him to but it made no differance to him if we did it now or later. He said we should talk with the dermatologist who had told us a year before to do nothing until she was 10, because some of it would have to be done with light therapy and he didn't do that.

I want to stop here and say that the dr he was talking about was no help to us and jason refused to let Haleigh go see them ever again. He then said we would have to see if they made a ballon small enough to fit her face, he was not sure if they did because he had never worked on someone so small. Just to make things real clear, he has maybe not on a face that small but he has done work on smaller children. Any way they needed to look in a book to see, remember when I went to the gentic doctor back in november we were told if there was any looking in books to run fast lol.

So that was it we left with no contact information for questions, no next appointment just the fact that once they looked the the book they would call me.

I have yet to revive a call from them, I called once, it was not his day in clinic so I don't know if they got my message or not.

How long exactly does it take this Dr and his staff to look at a book? Must be one big book!

Shortly after that appointment when I was actually thinking of going with this Dr just to get things started, because I suck at waiting, Dr C called with the news we were approved in Atlanta! God knew I was struggling with what was best, I prayed he would show me the path and he did.

The path was not to Birmingham!

Calls

Haleigh running around the kitchen

This morning I was able to return the phone call from the doctor yesterday. Haleigh has a kidney infection. Due to the fluid that was on her kidneys the doctors want to run a test series. This will be an ultrasound and x-rays. If nothing shows from that a dye test will be run. Haleigh will have to drink a blue drink and then they can watch it and see where it goes in her bod. Please continue to pray that day will run smooth and for the test to come back clear!

Landon

There was goos news today. On top of all the worry that came with the voicemail yesterday today was Landon's (my youngest son) speech evaluation. They said since he was born early that he is right on target! This was so good to hear!

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.