Duke SICC Appointment

I can aaaaaaalmost reach it.....
What?!? I didn't do it. It was Lucy!

C had a follow-up appointment with the Clinic at Duke this week. These appointments are with the Neonatologists who cared for him in the NICU and TCN. We've been going every 1-3 months because of the serious feeding issues and reflux that C has been experiencing. They are a wonderful team who like to stay on top of things, so we didn't mind visiting them that often. Our last appointment with the Clinic was just a few months ago, when he was still tube-fed, and it was "the" appointment where they gave us 2 months to get him off the NG feeding tube, or we'd be definitely scheduling surgery for G-tube placement.

Boy, were they surprised to see him this week! No tube, getting bigger, eating tons....it was a GREAT appointment and they were so happy with how well he's doing. Dr. M even mentioned that C just barely avoided the G-tube. We were sure to thank them for hanging in there with us while we tried everything under the sun to get him eating and avoid that surgery. He's still riding the 25% curve for his weight, but his height went up to the 65%! Tall and skinny, just like his Uncle Brian. It went so well that we don't have to go back for SIX months! (We'll still have to follow-up with Nephrology every 2 months until we can get C's kidney and blood pressure issues under control.) We also have to decide when to schedule surgery to have his abdominal side-wall hernia repaired ~ not something I like to think about AT ALL.

Here's a picture of his scar (aka: the shark bite!) and hernia.

They also reminded us of how important it is for C to have his hearing checked every 6 months for the next several years. I mention this here just for the benefit of other families. Because C was on the high frequency ventilator, he's at an increased risk for hearing loss. It's something that may not be present now, but that can occur over the next several years. So it's very important for these kids to be followed long-term by audiology.

Because of his low muscle tone, we will continue to see PT and OT often. His Physical Therapist just put him in shoe inserts to help stabilize him for walking. After the Duke appointment, we got to go shoe shopping for shoes that are soft enough for pre-walking and wide enough for his chunky foot plus socks plus the inserts (they go up to his ankle like a high-top shoe). That was fun (insert sarcasm here). Luckily, we found a very patient lady at the Stride Right store who pulled all types of shoes until we found one, in an Extra Wide! I never thought anything about C would be "extra wide" ~ teehee!

We are so proud of our little monkey and look forward to showing off his continued progress in 6 months! Hopefully, by then, he'll be walking and running up and down the halls :)