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!
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!
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.
We would like to thank the Sunday School Classes at Haleigh's Aunt Heather's church that allowed her the opportunity to come in and share about Haleigh. We would also like to thank those of you from Heather's church that have already donated to help Haleigh.
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!
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!