June 25 Update

Mattie’s doing well overall. He had an in-home nurse visit and a wound care appointment this last week. His G-tube looks great and I learned how to change out the button, the part that goes into his stomach. It was slightly creepy but pretty simple. It has to be changed out about every 3 months or so, and there’s a balloon at the bottom of the button (the part that is actually inside him) that has to be filled with a certain amount of water, so that also has to be checked from time to time. I learned how to do all that, and Matt did great.

The main struggle right now is with his feeds. The thickener (Gel Mix) is not working properly, so he has a tendency to aspirate when he’s drinking because the milk isn’t thick enough which causes him quite a bit of pain— and could potentially cause bigger problems, like pneumonia, if too much fluid gets into his lungs. Fortunately, while we were at Primary Children’s the other day, I talked to a mom who has a kiddo with similar swallow struggles and she said a frother really helps when mixing in the Gel Mix, so we will give it a shot 🤞.

But yeah, overall, he’s doing fine….growing and sleeping and doing tummy time. He’s cooing and watching things around him. He likes to look at light and be snuggled, and he is just a sweetheart. He’s coming out of the newborn phase but still has his sleepy times. He’s basically a pretty typical 2 1/2- 3 month old even though he’ll be 5 months old tomorrow.