I'm a little sad

Got a call from the Dietitian from the last set of labs where they were a little elevated. I have to cut back another breast feed and he can only have 1 gram of fat from food now. So I can only breast feed 3 times a day. I know it's best for him but it's a little sad for me.

Aidan is clear! & Dominic's Lab work update

Yay! Aidan does not have VLCAD - THANK GOD! That would have been a huge crisis to change a very picky boys eating habits among other things that would have had to be done. We were so relieved to hear it.

Dominic's labs came back and this time they were more elevated than the last 2 labs. His fat levels were a bit higher and his CK levels were higher than the last. They are okay enough though, we just have to keep getting them checked of coarse. The Doctor said he'll probably have muscle pain & weakness through out life. I've known that most VLCAD people do have this but not all so I was hoping maybe we'd escape it. It's always such a reality check to get the lab results. He has been doing so well so sometimes it seems like he's perfectly fine, though we know he has this life long condition that has to be managed closely. But he's made it 6 months with no problems like illnesses that would send him into the Hospital. Every day I thank God that they had the newborn screening available, it blows my mind that only 2 years ago they did not have it for this condition and we would have and were on our way to find out the hard way, had we not known so quickly. I'm an active reader on the support group boards and any new information I can find on VLCAD. I've read many many heart breaking stories, many children were not as fortunate because they did not know until a major crisis. But I've also read some good stories of healthy children with VLCAD that are thriving and going to school and have it all under control. There's lots of advice on how to manage on the boards, so thankful for that as well.