Tough Like Tuff, 1740 23rd Ave, Seattle, WA (2026)

04/28/2026

Well… we’re still here, and we still don’t have answers.

Tuff is his happiest self when his fever breaks and he’s not being poked. He flirts with everyone that comes in, smiling, showing off, just being his sweet, happy self… as long as they aren’t the ones with 💉 🤪

His fontanel is smaller, but it’s still bulging. The fever keeps coming back with a vengeance as soon as the meds start to wear off. In between those episodes though, he is completely himself, happy, playful, and 100% normal.

Right now, he’s got everyone stumped. The main concern they’re ruling out is meningitis, but based on how he’s presenting, they don’t think that’s likely. No one wants to jump to a spinal tap unless it’s absolutely necessary, especially since his labs yesterday looked really good. He just had repeat labs drawn, so we’re waiting to hear what the next steps will be.

Please keep praying for us. This boy has already been through so much, and it doesn’t get any easier watching him go through more.

04/26/2026

A small update.

We had a long night. Both Chris and I feel like we are on another planet but ultimately thankful we are here.

We’ve been admitted to the hospital for observation. The viral panels all came back negative. Still not sure what’s causing the fever which is also presumed to be the issue with his fontanelle to swell. When his fever comes back, the swelling seems to increase so he’s getting Tylenol around the clock. When the fever is gone, he’s happy, healthy and active.

Stool sample is next and hopefully we will get some more plans from neuro.

Please keep saying prayers for us.

Tough like Tuff 💙💪🏻

04/26/2026

CT came back with no brain bleed or noticable hydrocephalus. Praise Jesus.

But we really need an MRI to confirm this and also try to figure out what’s going on so we will be headed to Seattle tonight.

Tuff is stable enough to go via personal vehicle, just waiting on officially acceptance and then discharge here so we can get headed in that direction. Please keep praying for us.

Despite his fever, he’s a really happy baby and it is so reassuring to see.

04/26/2026

We need prayers.

Scout noticed a bump on tuffs head about an hour ago. His soft spot is swollen and hard. Our worst fears.

Within minutes we were rushing to the nearest hospital. Tuff has a fever and He just had a CT and we are waiting to find out if we can get to Seattle by car, ambulance or copter.

He’s acting fine but we know this can change in seconds.

Please pray with everything you have.

04/10/2026

Tuff had his 5th embolization this week, and going into this one, it felt like the scariest thus far. It’s a very strange, heavy thing to hold, knowing you’re handing your perfectly healthy, happy baby over for a high risk surgery where so much is on the line if anything goes wrong.

Despite all of that fear on our end, it ended up being his easiest surgery so far. He went in as happy as ever, and when it was time to wake up and be extubated, he was a little loopy but still his schmoozy self. Hamming it up with the doctors and nurses.

We went into this feeling confident it would be the last, but as it goes, another curveball thrown right at our foreheads.

While his VOGM has shrunk overall, some of the veins have shifted and created what I’m calling “spaghetti feeders” because it looks like spaghetti in his brain. Which has caused the pressure on his heart to remain. He still requires his lasix, which we were hopeful would have ended. We may be looking at multiple more procedures. Which feels like a real kick in the gut and has taken us a few days to truly digest.

The good news is that the large shunts have been successfully treated/closed. For now, we’re planning for the next surgery in July.

Trying to live without expectations when you have a medically complex child is one of the hardest things we have had to deal with. Just when you think you can see the finish line, it moves. So here we are again, walking into another cycle. Feeling blind. Feeling uneasy.

In the middle of all of this, we get to watch our sweet boy grow and thrive. Hitting milestones. Crawling. Laughing and just soaking up life. Holding both joy and fear at the same time. Celebrating today while holding it together for whatever is ahead.

It doesn’t get easier.

Some days it’s hard to see the light at the end of the tunnel. But we do our best to live in the light we have, soaking in every moment, holding on to gratitude, and leaning on God on the days that feel too heavy to carry by ourselves.

Please continue to pray for us and give us strength to continue to tackle whatever is thrown our way, and for Tuff and continued healing.

And as always, Tough like Tuff. 💙💪🏻

04/09/2026

Bustin’ outta this place!

Surgery went well and he bounced back so quick this time! We are very sleep deprived and ready for our own bed.

I will post some updates tomorrow, but for now…. So long SCH! We love you but we love home more! 🩷

Tough like Tuff! 💙💪🏻

04/07/2026

If you’re one for praying, we’d really appreciate one.

Tomorrow is a big day. Surgery #5.

It never gets easier.

God wrap your arms around us. Protect our sweet boy. Give us strength. Please bring Tuff comfort, bring him healing, and bring him safely back to us. Amen.

03/31/2026

We are one week out from surgery. Praying that this is the last for our sweet boy.

03/10/2026

We got up at 3:30am to head to SCH for Tuffs cardiology and neurology check ups. Less than a month until his final (hopefully) surgery. Gonna be a long day for us but we are excited to see our people. 🤘🏻💪🏻💙

03/09/2026

Six months ago today, our sweet Tuff came into this world. After everything we’ve been through, we are just so incredibly grateful to be here. Every single day with him is a gift. A true testimony of Gods will.

Tuff is such a ham. He absolutely loves attention, from anyone and everyone, which is so different from my other babies. He has the biggest personality already and keeps us all smiling.

He’s also started exploring some solid foods. His first was a big grass fed steak bone, and he cannot get enough of it. A little carnivore already.

Physically, he continues to amaze us. He’s exceeding milestones and rolling from one side of the room to the other like he has somewhere very important to be. Most of the time, that somewhere is straight to me. No matter where I am, he’ll do just about anything to get there. Including screaming his head off.

God continues to bless us and carry us through. Six months with this little boy has been a reminder of how precious life truly is.

We are so thankful for every moment with you, Tuff. 💙

01/24/2026

It’s been a wild couple of days. For now, we just wanted to share a short update, we’re home and recovering. We love you all, and your prayers have been deeply felt. Thank God.

As always,

Tough like Tuff 💙💪🏻

01/20/2026

Our Tuff boy did it again. He went into surgery and came out the same way he seems to do everything in this life. Strong, steady, and unscathed. No adverse events. No setbacks. Just another reminder of how tough this little warrior truly is.

It was a long, heavy day for Chris and me. The kind that feels like you’re trudging through mud. Like most parents before a surgery, sleep wasn’t really an option the night before. Add in the fact that we’ve both come down with some sort of cold or flu (timing, right!?) and a baby who had to fast… we maybe slept three minutes total.

This surgery felt different. It was almost dreadful anticipating today, yet knowing it’s life or death without it. We have watched our baby grow into this happy little boy, meeting milestones, flashing his big grin, while knowing that the risks of this procedure could take it all away in a second. It shakes us to our core in a way that’s hard to put into words. This is the part of parenthood no one prepares you for, loving something so deeply while standing face to face with something you are powerless over. Something that steals your breath away.

And yet… God is still good. Even here. Even in the hardest moments. Even when our hands are shaking and our hearts feel fragile. He carried Tuff through again. His incredible surgery team let us know they successfully closed two very large feeders and are expecting great outcomes. As of now, they anticipate one more surgery toward the end of March or beginning of April, with the hope that it will be the last one.

Cured, if you will.

We are overwhelmed in the best way. The prayers, messages, and support we’ve received today, please know we feel every bit of it and hold it tightly. We are endlessly grateful.

For now, Tuff is resting in the ICU where he’ll be closely monitored for the next day or two…maybe three. His team chose to keep his breathing tube in until around 6pm because it’s critical that he stays flat and still post-op. And if you know Tuff, you know he doesn’t do “still.” Keeping him sleeping is the safest choice, even though every second feels long when you’re waiting to see your baby’s eyes open again.

We’re praying for a smooth recovery and anticipating when we can go back home to our loud, messy, beautiful chaos. I cannot wait to say hello to my baby when he wakes up. To see that big, open mouthed grin that reminds me why we fight so hard.

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
— Joshua 1:9

And as always…

Tough like Tuff. 💙💪🏻

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Tough Like Tuff

04/28/2026

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