Test Results

Not sure if you all knew but Peanut and I got tested to find out who carries the gene that Faybree has. This will also help determine the chances of us having another child with this again. We got the results back today and we found out that Peanut is the only one that carries the gene. They thought that both of us might have due to her having a copy of the same mutation. The mind boggeling thing is since he is the only one carrying it, it was less than 1% chance that she could have gotten it. Since he has it, his siblings have a 50% chance of carrying the same gene as well. Needless to say if they want to have kids they need to get tested for it as well. To describe what happened in her getting the double mutation is way beyond my brain, but somehow I can understand it when he explains it to me. What is comes down to if we have another child it again is 1% chance of another child getting it. How scary is that, b.c Faybree got it. So, what will happen is if I get pregnant again they will have to test me at 12 weeks prego to find out if the baby is caring it, now that they know what to look for. The odds of her getting this is incredible and we ask god why did he choose us? We will never know. Lets just pray that he heels her and gives her a wonderful life as we move forward.

We're on The List!

Today we have BIG news. Faybree is listed on the Lung Transplant list. As you can imagine we have mixed feelings about it. We feel she is doing well, better than she was in Florida, so we are hopeful that she will prove the doctors wrong and get better. The other thing is if she gets a lung offered to her soon and she is the way she is now, it is going to be difficult to make that decision to move forward knowing she is doing pretty well. The only thing is, that she has been stable since she has been here and really hasn't made any more progress. That is what the doctors worry about. But, as we all know she does everything different. Her oxygen is at the lowest we have seen it in a long time. It is at 30% and room air is at 21%, so she is doing well in that aspect. The only bad thing is her settings on the oscillator are still kind of high b.c of what it does for her with her disease. That is where we might run into problems in ever getting her off of this. But, the best news is she has done better than when she was in Florida. She is off of 3 meds and her settings have gone down. That is progress to me. Although, she has her moments, like all children do. She is human after all. It seems like she is a bionic baby with all the tubes and wires she has though. But, as you all know that doing a lung transplant exchanges one problem for another. They pretty much tell us it is basically prolonging her life, that is isn't a fix. We are determined to beat the odds and hope and pray that medicine will advance as she gets older.

We also finally got a car today. Pretty cute one too. It is a black Mazda 6. Not to bad. Of course it is a rental. Now we can get around town a little bit and get some things we need. We are hoping to get into the Ronald McDonald apartments on Monday b.c the lady in charge is out of the office until then. So, until then. I will be in touch.

Transplant Fund Website!

Hello all. I wanted to share this wonderful website that Peanut's best friends Jay McFarlane, Kenny Birch and Kenny Brown have put together. Jay has been in close contact with the transplant organization and has really gone to town on this. It amazes me what dedication they all have in helping us out. I am so blown away with this I am truly lost for words the first or second time in my life. The first time was when they told me Faybree's diagnosis. I am sure you can imagine. Needless to say, I wanted to brag about them and wanted you all to check it out. Thanks to them, they have taken such a burden off of us. No one is as lucky as us to have such wonderful people in our lives. We are truly blessed people.

Enjoy!
The Neufeld's

http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=2367