Update on Baby Keo

So I just wanted to let everyone know what is going on with baby Keo. He has been such a wonderful baby. He eats great and sleeps wonderfully! He is so mellow and just happy. I just love him so much and am so grateful that my Heavenly Father has sent him to us. So the story begins with a call from his doc. I didn't think much of it because he was quite jaundiced and I thought the doc was just calling to check on him. Then he started to tell me that his Metabolic screening results were back (when they poke their little heel and draw blood) One of the things they test for came back at an elevated level. So I was like okay, then he starts rambling off big names and words and all I could think of was 'what the heck is he saying'. So I went into the office later that day to get him weighed and find out the name of this disorder. My doc said he knew nothing of this certain disorder and that they needed to run more tests to see if it was a for sure thing. Of course this was on a Friday so we would have to wait all weekend. So I went home to read about this disorder which is called Glutaric Acidemia type 1 (GA1) and then I lost it. All the information I had was what I could find on the internet and it was pretty scary. Basically what it is, is the body cannot breakdown the amino acids lysine, tryptophan, and hydroxylysine. So it sends the excess to the brain and it causes brain damage (and a load of other things). So I was freaking out and I cried and cried and cried. So my husband called the neonatalist at the hospital (they are friends) and he said chances are that the test they ran was a false positive. We talked to a few nurses that said the same thing. So we had a little hope that maybe he didn't have it. So Monday arrived and we had his blood drawn and they took a urine sample. And then I asked when we would get the results back and she said maybe two weeks ,TWO WEEKS! That is forever. In the mean time Keo had an appointment that next Friday to get, um, his little boy parts taken care of. So we went in and the doc came in and said well, we got the results back from his test. He seemed quite chipper and I though yea, its good news. Then he said that the results were real. He really had it. I just started bawling. First of all, some little facts about this GA1, there are only 100 cases in the US, second, we did not fit the profile to be carriers of this gene (it is genetic), and third, Keo was being a great baby. Anyway my doc had very little info and was trying to set up an appointment at Primary Children's. They were being very difficult and the Doctor was out of the country. So once again, on a Friday, we will have to wait till Monday to see when we can get an appointment. I have been a mess, yet at the same time I am very comforted. We have had many blessings and prayers and with each one I feel better about the whole situation. I am amazed at how my Heavenly Father has helped comfort me and helped me remain sane. I know he is by my side and I know he will take care of my little Keo as well as my family. Keo has to be on a special diet (low protein) and it is very crucial that he not be around anyone that is sick. He cannot even get a fever or we will have to rush him to the hospital for an IV. He also has to be on a few meds. As long as we are very strict about these things he should be okay. I have faith that we will be taken care of no matter what happens, even though it may be hard and scary. I am so thankful to my Heavenly Father for this precious little boy. Thanks to everyone for their prayers and love and all the help we have recieved.