Aug 2nd

Weekend Update 💙💙

Another weekend in the books.

Sometimes the best updates are the ones where there isn’t much to report. After everything these boys have been through, “stable” has become one of our favorite words.

💙 Colton

Colton had a nice, steady weekend. There were no new problems, and he continues to do well on his trach and ventilator. He’s tolerating his feeds, taking up to 60 mL by bottle every other feeding, and continues to amaze us with how much he enjoys eating. His medications are slowly being weaned, which is another small but important step forward.

The only thing we’re continuing to watch is the swelling in his head and face. It comes and goes, so the team is keeping a close eye on it while adjusting his electrolytes.

This weekend was all about being a baby. Dad got lots of snuggles, and Colton even made sure to christen him by peeing on him. 😂 It was one of those moments that reminds us just how normal he can be despite everything surrounding him.

Right now, his biggest job is to keep growing stronger so he can make the transition to his home ventilator. Every stable day gets him one step closer.

💙 Declan

Declan also had a stable weekend, and we are so thankful for that. He continues to tolerate his feeds well, his breathing remains stable, and he is slowly weaning medications as his little body allows.

The biggest update is that Declan officially has a diagnosis of epilepsy. That is a hard word for any parent to hear. The good news is that his seizures are only being detected on EEG. If he were home or any other healthy-looking baby, we likely would never know they were happening because they aren’t visible seizures.

While that is reassuring in one way, it also reminds us how thankful we are that he is exactly where he needs to be while the team figures out the best medication plan. He started a new seizure medication, Topamax (topiramate), yesterday, and we’re hopeful it will help get his seizures under control.

This week is a very big week for our sweet boy.

If everything continues to go well, the team is hoping to remove his breathing tube by the end of the week and give him a chance to breathe on his own. It’s a huge milestone we’ve been praying about for months. We know there are no guarantees, but we are hopeful.

As always, we celebrate cautiously. We’ve learned this journey can change in an instant, so we’re taking it one day at a time and trusting God’s plan.

Thank you for continuing to walk this road with us.

Prayer Request 🙏

Please pray especially for Declan this week. Pray that his new seizure medication is effective, that his epilepsy is well controlled, and that his brain remains protected. Most of all, please pray that he is ready to have his breathing tube removed and that his little lungs are strong enough to breathe on their own. Pray for wisdom for every doctor and nurse caring for him, and for peace for our hearts as we take another big step of faith.

Thank you for loving our boys and praying for them every single day. We feel those prayers more than you’ll ever know.

Colton admiring daddy

Declan Jet loves snuggles