GI Appointment

Lately, Matthew’s feedings have been fair at best and downright terrible at worst. Besides the problems he has with suck (and therefore leak) because of his hypotonia, Matthew has been congested for 6 weeks which has caused him to leak more. He has also had a problem with reflux which makes him freak out mid-feed and it is a struggle to get him to take the rest of the bottle. Last week the ENT put Matthew on prevacid in hopes that it would fix the reflux, fix the congestion, fix the feeding problem and fix the slowing weight gain. Unfortunately the prevacid made Matthew freak out more. The feedings after the prevacid were spent with a screaming Matthew, who after would be sweaty, tired, and not wanting to eat anything. The ‘cure’ was making it worse.

Thankfully last week we had already scheduled an appointment with the gastroenterologist for today. These were the key notes from our GI appointment:

1. Prevacid has been found to exacerbate symptoms of reflux in some infants under 1 years old. (We weren’t imagining it…it did make him worse!) Dr recommended we stop it immediately.
2. He prescribed Zantac. He thinks it should help within the next few days . We pray this helps.
3. He recommended we add a little rice cereal to Matthew’s bottles. Now we just need to find a bottle nipple that is big enough for the cereal but small enough to limit his leak. So far, 3 tries and no luck.
4. He thinks that Matthew’s fat stores are adequate and we shouldn’t be worried about his weight gain. Like us, the doctor suspects that Matthew will be on his own curve and he’s healthy at the weight he is right now. Matthew isn’t a budda baby, but he’s the chunkiest Hoy baby we’ve had. Hopefully we can convince our pediatrician to not worry about the slow weight gain.

Tonight, Matthew, Darren and I are going to a seminar put on by the genetics department on dealing with stress with a genetic disorder diagnosis. Although we feel like we are in a pretty good place right now, taking each day as it comes, it never hurts to have more tools in our tool kit for when the unexpected arises.