So what happened at the conference?

It was truly a neat experience. Some parts intrigued us, some made us sad, some went over our heads (these parts were meant more for the professionals), and some made us wonder.
Some of the topics that stuck out to me, were: speech impairments, feeding issues, and psychological problems. On the topics of speech and feeding I made sure and payed special attention. These are current issues for us, and I want to make sure we do what's best for Angelina.
Feeding: VCFS babies tend to be smaller and skinnier than most kids. Most of us think that the chubbier the baby- you know the type that we can't help but pinch their cheeks- the healthier they are. Not true for VCFS babies. Actually VCFS babies tend to be overfed!
So why does Angelina have those big pink cheeks? Well regular formula has 20 calories per ounce, we've always fed Angelina 24 calorie/ ounce formula, as prescribed by her doctors. Now she's actually on 30 calorie per ounce formula! She's suppose to take 3- 8oz servings of this a day, along with what ever she'll eat! Well, that's not really what we are doing with her. . .
I had my doubts about this to begin with. I wondered if this heavy formula (similar to Ensure or Pediasure) wasn't making her so full that she would not want to take anything else? Well after having our 1:1 with Dr. Shprintzen and having heard from other therapists at the conference we came home and changed how we were feeding Angelina. And guess what? This girl loves to eat! She actually hollers at us if we don't feed her fast enough! I almost can't eat at the same time as her, because while I'm trying to take my bite of food she already wants her next bite. We still give her the higher calorie formula, but only 1- 8oz serving, otherwise she drinks regular milk or water.
Dr. Shprintzen talked about a separate growth chart for VCFS kids. That way they won't be pushed to eat more than they can handle. Hopefully this will be accepted amongst all pediatricians. Angelina wasn't even making it on the regular growth chart for a while, now she's barely in the 5th percentile.
When we were in the airport somebody commented on how cute she was, and asked if she was about 8-9 months old? They were shocked when we said she was 16 mos! At least we know that this is really ok. Plus look at us, our kids will always be on the smaller side!
Will tell you more about Speech and Psychological issues next time!