Growing

Haleigh and her Mom, Crystal

Haleigh had a genetics appointment today, its been a year since we have seen him. They showed me a picture they took at her last appointment and I was surprised at how much of a baby she looked then and how much of a big girl she looks now. I also realized how much her nevus has grow in a year, last year it was not on her nose or chin and this year its half way across her nose and 1/4 of the way across her chin. That's pretty fast growth no matter who you ask.

She is also growing in other ways, Haleigh weighed in at 23 pounds 6 ounces and is 2 feet 9 inches tall, her head is 42 cm around. When we 1st went to him Haleigh was 7 months old and all of about 11 pounds, so for them to see her doing so well made them smile.

They asked me all kinds of questions, like they always do. They want to be sure she is having no major health problems that have come up in the past year. The only this that has changed is her Asthma, and since we are not seeing an asthma doctor, they call it mild. I told them how she was talking, walking, running every where, and how good of an eater and sleeper she is. Everything I told them was normal for a 2 year old. They asked what if any concerns I had for her and the only one is her nevus.

Dr. M, said told me that  if Jason and I were to have 20 more kids none of them would be at any more risk for the birth defect Haleigh has than any other child, that this is just something that happens and its not my fought and its not Jason's fought. My grand kids have no greater risk of the birth defect either. He has told me this before, but its so good to hear someone say "you did not do this". No matter how hard a mother tries anytime anything ever happens to her kids, even if she was not there when it happened, she feels it's her fought. I have thoughts, What could have have eaten, what could I have avoided, did y throwing up my prenatal do it? Every thought ends with it being my fought!

I got some other news that I really did not and still am unsure of what to do with it. I asked Dr. M, what his advice was and he had no problems giving it. So here is the news, there is this doctor is B'ham, he somehow found out about Haleigh and the trouble we were having with finding a plastic surgeon in Alabama that we could get a referral to see. With out contacting me first, they contacted Haleigh's primary doctor and told them they thought they needed to see her and got them to give a referral, the surgeon's office then contacted me with an appointment date and time. I was very taken back, because I know nothing about this doctor and have never contacted them. I do not even know if I want them to do surgery on my child. I do not know if I trust them. It seems to me or at least feels like they went behind my back at 1st, but maybe they were just trying to help, I really do not know.

So, Dr.M, asked today about our plans for removal and I told him about Dr. Connors and then about Dr. Grant in B'ham. What he said makes since, He told me there is no reason not to go meet the doctor in B'ham. He did say that the way they got Haleigh's referral was not the way it should have been done, and that he has a feeling he wants Haleigh's case because it will bring him in more kids like Haleigh and with that means more money for him. While we do  not know for sure, he also said to not be surprised if they ask to take a lot of pictures, have a bunch of students come in and look at her and want to publish a study. Of course I can say no and they can not do any of it. And nothing will be done with out my OK. He said if it was him he would take his daughter and see what his intent is. He also said that what Dr. Connors is doing sounds great, and we should continue to help him in any way we can, not only for Haleigh, but for other children that will be in her shoes in the future. He also said if there was anything he could do for us to let him know. I wish he could be our primary doctor, he's so great and just sits and listens and then talks to you like a parent, like a person. He explains everything to you and makes sure you leave understanding everything he has said!

He also talked to me about 2 ways they surgery could be done, he did say he was not a plastic surgeon though and for the most up to date information there is that plastics would be able to give me that information. He advised me to go to B'ham armed with information and ask questions I already know it answers to, just to see what the top of his head answer will be, if he needs a computer or a book to answer me, then don't trust him.

So I guess I am going to take Haleigh to B'ham at the end of December to talk with this doctor and see what his intent was on getting Haleigh in to see him.

Maybe this is the way God is leading us, maybe God just wants me to visit B'ham for another reason, maybe it's to see what not to do. I am not sure, what I am sure of though is no matter what I have 2 great doctors behind me no matter what!

We go back to see him in a year, unless we need something I can call at anytime!

Tuesdays

It seems that there has been way too much time between blog post on Haleigh, so I have decided to make it easier on everyone, and update once a week. The best day to check for anything new will be Tuesdays.

Haleigh is doing well, during the fall and spring months her asthma gets worse and she has had to have extra meds for it in the past month. Once the cool air sets in and her lungs get use to it we'll be able to cut back again. She takes her breathing treatments really well. She use to fight me for the whole 5 minutes it take to complete a treatment, and if you have ever sat with a kicking screaming child for a whole 5 minutes you know that is an extremely long time. She will not sit still for 3-4 mins and gets ants in her pants for the other 1-2 mins. Not too bad.

Haleigh is growing really well too, I am not sure of her weight this week, but she goes to see her doctor on the 12th for her 2 year check up. She eats all of her meals no instead of drinking mostly formula, although she still does get her formula, she'll only take about 16 ounces a day. Her next GI appointment is December 16th, 2010. I hope when we go to that appointment he approves whole milk for her. She's been eating milk and soy with no problems for 4-6 months now and eats cereal with milk in the mornings, so I do not see the need for the formula in her diet any more.

At her 2 year check up I am going to talk to her regular doctor about her Nevus. They have told me a few times  that Nevi are not painful and she can not feel it, but I am not sure they are right. Haleigh has sensitive touch I am guessing you would call it. From the day she was born, she has been more sensitive to things touching her. Her blankets had to be softer or she would cry, her diaper could not be too loose or too tight, her clothes, her socks, her shoes, everything had to be just right. She would only take one kind of bottle and you had to hold it just the right way. I  know for an older child you would call that spoiled, I guess Haleigh came here a High needs baby, or spoiled whatever you would like to call it, she's always been that way. So she has started to rub her face and say OUCH! She rubs the inside of her cheek and said ouch, I believe a 2 year old can not make up pain. Just because someone else with a nevus like Haleigh's does not have any pain, does not mean that Haleigh does not feel what ever she is feeling as pain. I have never seen another baby have to have socks on, or have their diaper changed with in 30 sec. of being dirty even if in the car or boy you were in for it!  I doubt her doctor will know what to do with the information, he always tells me to call the Dermatology. and they always tell me she's fine, the only reason I tell him is because if you tell them they have to chart it, and I want it charted that I have at every appointment been concerned about it.

We have been working with Emergence Gifts raising funds for Haleigh's surgery, I wanna thank all the people dropping their change off in our bucket at the ball park. It really adds up fast, in the past few weeks we have raised about 100$.

I have some other news that I am hoping helps with a lot of the funding. On January 1st, 2011 We will have, Blue Cross and Blue Shield Anthem, through Jason's job. If the Children's Hospital of Atlanta takes the insurance, and the insurance will agree to pay for the surgery, it will cut the cost of Haleigh's surgery by about 80%!! That is a huge cut, of course there are a lot of ifs with that, but it's worth a shot and I think if they will see the nevus as a birth defect and not a cosmetic enhancement then they should have no reason not to pay for it.

I feel as if we are getting to our goal of being done with it all by the time she is 5 years old. So she can go to school and not have the other kids point and stair. That has always been our goal, to help her live her life as normal as every other child!

Good News

There is a possibility that we will be approved for insurance through Jason's work. If that happens and we can get them to view the Nevus as a birth defect and not cosmetic some of the cost will be covered. We are praying that this will come through so that the amount we need to raise will be lower than we thought!

Cook Book

We are currently accepting recipes to be put in a cook book that we will be selling to raise funds and awareness for Haleigh and children with the same condition. If you would like to submit a recipe you can contact me at haleighstory@yahoo.com.

DONORS

Thank you to those that have already donated funds or have contributed time for Haleigh. Each of you know who you are. You are helping change her life forever!

Haleigh at the park with her grandpa

The Understanding of Others

Mom's front porch

Believe it or not there are some people out there who do not understand why we are pushing for Haleigh to have surgery at such a young age. And there are even some who think it is wrong to make this choice for her.

I really wish others could go with Haleigh and have other moms tell their children she has something on her face. I always smile and say I know, that is the way she was born. I have got the “oh sorry”, the smile because they do not know what else to say and I have been asked 100 questions too.

I can honestly say I out of the 3 I would rather get asked questions. I mean saying you’re sorry? Really for what, I am not sorry she was born this way. God made her that way and I love her I am not sorry. And if you don’t know what to say after that then maybe you should not have said anything to begin with!


Then today I was really unsure how to handle a spot I was in. I was shopping at Winn Dixie they employ people with mental handy caps. I have no problem with that. I think it is great. Except the man who was aching our stuff didn't understand that her face was not dirty and he kept trying to wipe it. They did nothing it was up to me. I had to tell him not to touch my baby! I guess it just upset me. Sometimes, I wonder if everyone looks at her and then at me and wonder why I do not wash her face

Haleigh is sick

Haleigh got up yesterday morning, after not sleeping much, with a runny nose. Yesterday afternoon she started to run fever and coughing. Last night a gave her a warm bath and some Advil and put her to bed, an hour later Jason went into her room to check on her and she was on the floor with her pillow and blanket. She has learned to climb out of her baby bed! She was also so stuffed up and coughing, so I took her out in the night air while Jason sat up her breathing treatment, as she was wheezing too. That was at 10:30 pm, we were then up at 1am for a treatment and meds, 5:30 for treatment and meds. and because Landon had another appointment today my mom gave her one at 10:30am. She woke up on her own coughing and wheezing. So we had to cancel her GI appointment that was to see if we could take her off her formula, the next appointment we could get was for December 16th, yes December 16th, but at least its of this year! She has an appointment in about an hour, I wanted them to listen to her, but I am not sure there is any thing else they can give her, She's already on the breathing treatments. I guess I just want to be sure there is nothing in her lungs and that her ears are clear.