Sept 10th

Both boys have been having some really good, restful Green Day’s & that is exactly what we needed.

We’ve been following our new schedules, and things have been going so smoothly. Both boys are learning to take nice, long naps in the middle of the day and are sleeping through the night.

Apparently Mom’s schedules might actually be working. 😉 Right now, our biggest goal is simple: rest, rest, rest.

Declan is becoming such a little man. He sits in his MamaRoo chair twice a day and absolutely loves it. He is also killing it in therapy. He’s starting to track with eyes more, hold things and work on sitting up like such a big boy. His last two sessions with PT and OT were the best he has ever done. It is amazing watching him grow and seeing all these little pieces start to come together.

We’re keeping him on NAVA through Monday, and then we’ll slowly start lowering some of his settings. We expect him to stay on it for at least another week or two while we take our time and let him lead the way. He’s doing really well.

He still has some belly issues around his G-tube site, but after talking with surgery, we know this is something we may be dealing with for the next few months and something we can manage at home. There’s nothing urgent happening right now; we just want to keep the irritation and bleeding under control. So far, the extra rest and slower movements seem to be helping.

I’m so proud of him. And, of course, he’s being super cute. Apparently “super cute” is my phrase of the day. 😂

Colton is also doing really well. His swelling has improved so much. You can still see a little more when he first wakes up in the morning, so we’re going to try keeping him slightly more elevated while he sleeps. But overall, he looks great. He can open both eyes again, he’s smiling, and today during OT he held a ball and rolled over! 

Such a big moment.

He still has a longer road before we can start talking about getting him onto his home vent because his pressures are still very high, but we’re working on it slowly. There is no rush. We are just so proud of the progress he continues to make.

He’s still fighting the whole “big boy chair” thing a little bit, but he’s learning. 😂 He loves his MamaRoo, though, and he has been following his schedule to a T. Today he had his monthly echo, which completely ruined his scheduled nap…. but don’t worry, he made up for it afterward with a nice long one.

Again… super cute. 🩵

And that’s really where we are right now. No big changes planned between now and Monday. No pushing. No rushing. Just letting their bodies recover, grow and get stronger.

Rest. Rest. Rest.

🙏 Our prayer tonight:

Lord, thank You for these quiet, green days. Thank You for the smiles, the naps, the therapy wins, the little rolls and every tiny sign of progress. Please continue to strengthen Declan and Colton and allow their bodies to heal and grow. Give their medical teams wisdom as we slowly take the next steps, and help us remember that progress doesn’t always have to come from doing more, sometimes it comes from simply allowing their bodies to rest. Please carry this peace into the weekend and give our boys exactly what they need.

Keep the prayers coming for our boys. Here’s to a quiet, restful, GREEN weekend. 💚🩵🩵

God bless.