June 20th update

(Sappy Father’s Day post coming tonight…)

Colton & Declan Update…. Sorry it’s been a few days. This week brought a mix of answers, challenges, and many reminders of how resilient these boys are.

Declan

Declan had an MRI this week after experiencing seizures. The doctors believe the seizures were likely related to the staph infection he has been fighting and concern for meningitis. The MRI showed some areas of brain injury that can be seen in babies born extremely premature, as well as some inflammation consistent with infection. There was also a small area that may represent prior bleeding. (From the past, not current!!)

While these findings are understandably difficult to hear, it's important to remember that imaging is only one piece of the puzzle. Right now, no one can tell us exactly what these findings will mean for Declan's future. Babies continue to grow, heal, and surprise us every day. (Especially Declan) The doctors will continue to monitor him closely as he completes his course of antibiotics and recovers from this infection.

There are also encouraging signs. His EEG was disconnected after more than 24 hours without seizures, and he remains on treatment to address the infection. For now, we continue taking things one day at a time, trusting the medical team and leaning heavily on our faith.

As always, we are reminded that God has carried Declan through challenges we once couldn't imagine surviving. We don't know what tomorrow holds, but we know there is always a tomorrow and our Declan is a warrior.

Colton

Meanwhile, Colton continues to be the happiest little guy around.

His biggest problem these days? He needs a bigger neck! He's growing so well that he needs to fill out a bit more for his trach to fit just right. We will gladly take that problem.

He has been playing, growing, and soaking up all the attention he can get. He's already figured out that if he reaches out for someone, there's a good chance they'll hold his hand. Auntie Laurie has quickly become one of his favorite targets and is already wrapped around his tiny finger. Aunt Lynn, on the other hand, is doing her best to teach him independence and reminds him that sometimes he can do things himself. We have a feeling this is only the beginning!

One of the sweetest parts of this week was watching Ryan and Colton together. There was so much holding, cuddling, playing, helping with trach cares, and simply enjoying being together. After so many months of hospital life, watching a father and son just be together is something I will never take for granted.

Thank you all for continuing to pray for our boys, our family, and the incredible team caring for them. Some days are heavier than others, but we continue to see God's goodness in the middle of all of it.

Prayer Request

Heavenly Father,

Today we come to You with grateful hearts and weary hearts all at once. Thank You for carrying Colton and Declan through every challenge, every procedure, every setback, and every victory. Thank You for the doctors, nurses, therapists, and family/friends who pour their hearts into caring for our boys each day

We lift up Declan to You. Lord, You know every detail of his little brain, every cell, every injury, every infection, and every fear that weighs on our hearts. We ask for complete healing. Calm any seizure activity, clear every infection, protect his developing brain, and strengthen his body as he continues to fight. Help us trust You with the unknowns and remember that no diagnosis, test result, or scan has the final word. You have the final word.

We thank You for the joy that shines through Colton. Continue to help him grow stronger each day. Bless his lungs, his trach journey, and every milestone still ahead. Thank You for the smiles, the hand holding, the cuddles, and the reminders that there is still so much joy in this season.

Give us (Ryan, me & everyone else) the strength for the road ahead. When the days feel overwhelming, remind us that You are walking beside us. When fear creeps in, replace it with peace. When we struggle to see the next step, help us focus on today and trust You with tomorrow.

We know You have been faithful through every chapter of this story, and we believe You are not finished writing it yet. The boys will have a long life. The boys will make an impact.

In Jesus' name,

Amen.