Monday, February 9, 2009

Test Results

We received Landon's test results today from our Pedi. They were not what we wanted to hear. The first genetic screening came back abnormal, the second one came back negative, and now the more in depth tests they ran on him while on the medicine for the disorder they believe he has came back Positive for the disorder. Now, this being said our Pedi said the results are not 100% accurate, but this latest test is WAY more accurate than the screenings, so we are moving forward with Landon having the genetic disorder.

The disorder that Landon more than likely has is called VLCAD. It is a very rare disorder in which your body is lacking the enzymes, or the enzymes are not complete, that break down the fats in the foods that you eat. If left un-treated it can cause damage to some pretty vital organs. We have had Landon on Carnatine (the drug they use to treat this disorder) since the first screening came back abnormal. I will be meeting with his Pedi again tomorrow to make sure that he is gaining weight properly and to have him check him over to make sure he still looks good (this worries me a little...what exactly are they looking for in a 3 week old baby that could have gone wrong this quickly). Scott and I will also be taking him to Phoenix Children's Hospital on Friday to meet with the Geneticist that has been handling Landon's case. In any instance it is looking and the doctor's are moving forward with Landon being positive for VLCAD. We will have alot more information and all of our questions asked and more on Friday after meeting with this Geneticist, so I will update y'all once I know more.

I cannot speak for Scott on how he feels about all of this, but I can tell you how I feel. Currently I feel very numb. I want as much information as I can possibly get and I have about a bazillion questions running through my head, I just have to find a way to formulate them and write them down so I remember everything I want to ask this guy on Friday. Mostly I am sad...sad that my son who is 3 weeks old already has a hurdle in life. I am sad b/c neither one of us knew that we possibly had this in our families, hell we didn't know what it was until a little over a week ago. I want to know what quality of life my precious little boy will have. He is so sweet and loving and great, how could he possibly end up with something like this...he has done nothing wrong...nothing to deserve this. I feel like I am being punished for something I have done in my life...and it's not fair that it is him who has to suffer and have the disorder. I am really trying not to think to hard about ti all until we can talk to the Pedi (whom I love he is great) tomorrow and the Geneticist on Friday. I have plenty to keep me busy until then. Landon is now on a strict, must be fed every 3 hours (even at night..which sucks b/c he was sleeping 3.5-4 hours at a time), and has to take his medicine 3X/day with food.

Please keep Landon and our family in your prayers. There is still a very small chance that all these tests could be wrong and he could be perfectly fine...and some small part of me I think is clinging to this possibility.

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