Dominic's 1 year appointment

We had Dominic's one year appointment and he's doing great! We are finally up to 3-4 grams of fat from food a day, and I'm starting to wean from the limited breast feedings. So far the labs for his ck and metabolic panel all came back good. And the one test we were worried about was his echo cardiogram and it was normal!! He's 95% percentile in height and 25 percentile for weight. His development is right on track, he says some words and since he's been walking for the past few months he's now running and yesterday I caught him on top of the kitchen table. We can't believe he's already 1 and we feel so much more confident about ensuring his health than we did when we first found at 7 days old.

1st Birthday, 1st cup cake - Fat Free of coarse :)

Happy First Birthday!!

Dominic is 1 today! It seems like we've come such a long way since first finding out about his condition at 6 days old. I can still remember the every 2 hours around the clock feedings that had to be done at first, now we are up to 6+ hours at night before he has to eat again. He's been such a strong boy and continues to do well. We had the reality check of knowing we will have times when he had to be admitted when he can't keep anything down, but as he grows he'll be able to tell us better how he's feeling. I am so thankful for the newborn screening, that he was picked up through is so fast and able to get treatment right away. There are still States that do not screen for VLCAD and other Fatty Oxidation Disorder. That's so scary to me having a child with it.
Currently he is able to have 2 grams of fat from food per day, he's still breast feeding about 2 times a day, I'm about ready to start weaning though so that he can slowly add more fat from food. It's hard to find fat free/very low fat protein for him right now and I know he needs it. He's just as wild as his brothers, climbing all over and getting into all kinds of trouble already! The hardest thing I'm dealing with is keeping him from getting a hold of crumbs or food left by his brothers. I've caught him with a piece of chocolate or something else that's way too high of fat for him, I never thought I'd be so panicked by that type of thing. In a week we have his first Echo Cardiogram since he was 7 days old, this will tell us if his heart is normal or enlarged, with VLCAD his heart can enlarge over time if he has too much very long chain fat. We are praying that it's normal and just fine!