Doctor Appointment Update

We went to the Infectious Disease doctor today and so far, so good. She said that she looks great, but Lilly had to have some lab work done so that they could test her blood for immunodeficiencies. We will find out the results by Monday. If her levels come back low, she will have to be placed on a routine intake of antibiotics to help keep her free from illness. If her levels come back fine, then we will go back to this doctor 1 year from now, unless Lilly gets sick constantly. Please keep her in your prayers as we wait for these results to come back. We still have not heard back from the geneticist, but hopefully we will soon. God Bless

We're sleeping great through the night now! Lilly only gets up once or twice to eat and then falls right back to sleep. It's taken us awhile to get her on a schedule because after her surgery we kind of just let her run her own schedule. She is such an active little girl, who is always cheerful. On Sunday, we took Lilly to get her picture taken and they are adorable! I am so excited to share them with everybody. When I get them uploaded I will post them. If anybody would like one please let me know so that I don't leave anyone out. Tomorrow we go to the Infectious Disease doctor to have Lilly's immune system looked at. I'm not exactly sure what this visit will entail, but I will be sure to update everyone. So far, she has been a pretty healthy little girl. We are still trying to get over a runny nose, but other than that everything healthwise is going great. We still continue to pray for her each day as she develops and gets bigger. She is such a strong little girl.

More pictures..

Hiding behind one of her first smiles.
Sleeping with her bunny that Papa (Charlie's dad) bought her.
Lilly loves the mobile in her crib. I even catch her talking to it sometimes.
All smiles for Grandmama!

Bath Time!

Holding her passie in, now all she does is take it out and sucks her thumb or screams.

She didn't like her first bath at first.

Then she loved it, and stills loves her bath time.

We're getting bigger!

Hey everyone! It's been about a month since Lilly's surgery and we're doing great! Her scar is healing and she is growing more and more everyday. She is already 11 pounds and 2 ounces. I don't know what is in this milk, but she's a great eater! She had her first bath about a week after we got back (I'm going to try to post pictures). Bath time is one of her most favorite times of the day. She absolutely loves the water. She also loves to go on walks each night around the lake that is behind our apartment. We have been busy since school started. I am now going to school and taking clinicals at Greenville Memorial. I am in the mother/baby unit and labor and delivery, which is a great learning experience since I just went through this. While at school, Lilly goes to "school" as well. She is doing great during the day at her "school," she's always so happy when I come to pick her up. We were blessed to find such a wonderful lady to watch her.



But on to her health...we went to the cardiologist about a week ago and he said everything looks excellent. Lilly had an x-ray of her chest and her sternum is healing well and her lungs were clear, so he took her off of her Lasix. We also saw the geneticist and he explained how the VCFS, otherwise known as DiGeorge Syndrome developed. I am going to try to briefly explain it to give everyone an idea if you are interested.



Well it all begins with the genes from the egg and sperm. The genetic disorder that Lilly has is called a "deletion." A deletion develops when the egg is fertilized and the chromosomes are mixing, a piece of one is lost (This is already pre-determined in the egg or the sperm, we do not know which one. Charlie and I are having the same genetics test completed to determine if Lilly's deletion was a fluke or not.) If the piece of chromosome is not recovered, you get what is known as a "deletion." The deletion is on the 22 chromosome in a particular region called q11. Now they do now know exactly what this deletion affects because it is different in each person. We do know that it has affected Lilly's heart and the structure of her ears (which is not a major concern). It is important to know that this syndrome can cause her immune system to not be as effective as yours or mine. She can also have problems with her calcium levels. We have had her levels checked and everything has come back normal, but we will periodically get lab work done to make sure she does not need anything extra. Another area that VCFS can affect is her learning. She may have delayed development. In order to help with this we already have Babynet coming to the house to help work with her development skills. We have goals set up and as we reach these goals, we will set new ones. We will not really know how well she is learning until she gets older, but it's better to have early intervention, than having it too late. If she needs further therapy, such as physical or speech therapy, they will refer us to the appropriate people. This Friday, Ahead Start is going to show me massage therapy. I'm really excited about this.



Our family is so lucky to have everyone praying for us and helping us through this. God has really given us a gift. Lilly has changed my life for the better and I have witnessed it change so many others around her. She is a bright, cheerful little girl who lights up the room she is in. I know that whatever struggles she may face in the future, she will be able to handle with God, family and friends all by her side. God is always with us, guiding and teaching us new things everyday. Everytime she smiles at me I just melt inside and cannot believe how lucky I am to have such a beautiful daughter.