Hi Sara,

My son is 6 months old, so I’ll give you some of his numbers to compare. At birth he weighed 6 lbs 11 ounces and was 21" long. We were expecting a much larger baby, but he looked like a premie. As soon as we figured out the CAH he started to ’fatten-up’ before our eyes. He’s now 17.5 lbs and 27". I don’t think the meds will be affecting his weight yet the way you’re thinking. Like you said, it’s too hard to tell if it’s the CAH or just because they’re babies :) I Knew a non-CAH child that was 26 lbs at 6 months, and is 2.5 now and finally thinning out a little bit.

As far as the meds go, we use the pediapred suspension and I syringe it into his mouth twice a day, 8am and 8pm, so the sleeping part hasn’t been an issue. I don’t think the suspension is bad for everyone. I only heard the cortef suspension was bad, but it probably differs for everyone. Our endo seems to be happy with his numbers.  And we give the florinef with applesauce so he sucks it down every time.  What are the other hours of the day you’re giving him the suspension? maybe tey could be adjusted? My endo’s only direction was twice a day so those were the most convenient times for us. I know that’ll change though once he’s older and we go to cortef. She’s already mentioned that those will be given 3x’s a day so once will be during a sleeping period.

As far as the blood draws, we’ve never had to go that often. Just every 3 months. So far it’s been just twice since we figured it out. And we’ve never had a problem with the draws once we find someone who’s willing to do it. The last time we waited an hour because no one at the lab (not at the hospital) wanted to stick a baby. But the woman who finally did was great.

I hope it gets better for you. I’m still at the beginning of this road too, but it sounds like it’s a little rougher for you. I’d go crazy having to get him stuck so many times. I already hated the coupld of times. Hope some of this helped.

Sonya