Sept 8th

Today was a good day. A calm, mellow, relaxed, exactly-what-we-needed kind of day. 💙🩵

After the chaos of the weekend and then a couple of quieter days to recover, it finally feels like the boys are getting back on the ups.

Mom may have gone a little overboard and created official schedules for both boys and hung them up in their rooms. 😂 The goal is simple: protect their rest, make room for therapies, and make sure we aren’t asking too much of them at once.

And somehow, without even trying too hard, today we followed them almost perfectly. Therapies, cares, naps, snuggles… everything just fell into place.

And the boys responded exactly how we hoped they would.

Colton had a great day. He can open both of his eyes again, he was smiling, and he looked so much more like himself. We met with both the kidney and neuro teams and are working through a plan for the next steps. There are still some things we need to figure out, but hopefully the next few days will bring us some more answers.

He is also handling his PEEP of 12 beautifully, which is another step in the right direction.

And then there is Declan. 😂

Our feisty, bossy little man was BACK today.

He had a nurse he hasn’t had since he was much smaller, and apparently Declan thought that meant he needed to show her exactly who runs the place now. He tried his very best to run the show.

Little did he know… she had him completely figured out. 😂

It was fantastic!!!!

He had a fun bath, showed off plenty of personality, and possibly the biggest victory of all…we actually got him to fall asleep and take a real nap in the middle of the day! 3 hours!

Surgery also came by to look at his belly, and I was able to sit down with them and talk through what this looks like long-term. Tomorrow I’ll meet with Dr. G, who did Declan’s surgery, and she is going to walk me through exactly what is happening and, most importantly, how we can still go home with it.

That conversation brought me a lot of relief.

What initially looked really scary to me is something the team sees with babies who have GJ tubes. It may not be ideal, but I’m learning that it also isn’t completely out of the norm.

Now they’re going to start teaching me how to care for it, too, instead of me always relying on the nurses.

Another little step toward becoming the expert on our boys that I’m going to need to be when we finally get them home. 💙

Today wasn’t filled with huge milestones or exciting adventures.

There were lots of naps. Lots of sleep. No crazy activities. No pushing limits.

Just two little boys doing baby things.

And right now, that is exactly what they need.

Rest. Heal. Grow. Repeat.

I wish every day could feel a little more like today. Calm, steady, and moving forward.

Please keep the prayers coming for our boys. Pray that their bodies continue to recover from the weekend, that we get good answers and clear plans over the next few days, and that we can keep moving forward…one peaceful, boring, beautiful day at a time.

Most of all, pray that they continue to grow. That’s their biggest job right now.

And we’ll take care of the rest. 💙💙

God bless & Goodnight!

Colton’s eyes!!! 🥰🥰

Declan sleeping!!! 3 hours… 🤣🥰