Tuesday, March 31, 2009

Landon's Test Resuts

After waiting 6.5 weeks the Geneticist finally called us with Landon's test results. They are positive for "Non-Cardiac VLCAD." Which is both good and bad news in itself. It's bad news b/c he does have the disorder, but it is good news b/c he has the mildest and non fatal "version".

The Geneticist says that his kind of VLCAD gets better as he gets older, we will continue with the same routine we are on. Which is feeding Landon every 3 hours, taking meds 3X a day, and switching between nursing and his special formula recipe (that I have to make in a blender...not convienent). Neither Landon nor I will get any good amount of sleep until he is 6 months old :o( We will continue to wake him up and feed him every 3 hours until then. Once he hits 6 months old he can go the number of hours for how old he is w/o eating...So 6 months= 6 hours, 7 months= 7 hours, etc. The Geneticist said their main worry with the type of the disorder Landon has is for him to avoid breaking down his own fat, and having his blood sugar drop.

Landon is not allowed to go to Daycare until after the completion of next Winter. They want to keep him away from all the crud that gets passed around daycare, and also b/c if he gets a stomach virus or diarhea and it lasts more than 6 hours he will have to be Dehydration.

That is all that I know so far besides once he gets on solid food we will all be eating a lower in fat, heart healthy diet which he will require for the rest of his life, but it is manageable. I am still trying to slowly wrap my brain around it and all the financial stuff that might come with it. If I said I wasn't upset about it or haven't cried since talking to the Geneticist yesterday afternoon, I would be lying. I was really hoping for both of us to finally be able to get some sleep, and now it will be 3.5 more months until then. We can do this though, I know we can.

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