Love for Lukas

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Love for Lukas

A little boy living life with the SMARCA4 variant of Coffin Siris Syndrome & a 19p13.2 microdeletion

28/01/2026

When your little sister knows how to erk your nerves 😂 they may not seeom like they have a typical relationship, but trust me- they very much have a typical relationship. They are partners in crime but also fight something awful 😂

23/01/2026

Big shout out to my newest top fans! 💎

Jodie Goode, Charles Stanley, Michelle Merrick, Mandy-Jason Petefish, Crystal Gray, Fonda Powers, Bea DeLong, Patty Bussell, Patti VanHorn, Jamie Webb, Philip Gray Jr., Kara Hammer, Susie Johnson

Drop a comment to welcome them to our community,

23/01/2026

Big shout out to my new rising fans!

Kenedy Tate

23/01/2026

5 years ago today I had the crazy idea to start a page for our family & local community to follow Luke's medical journey. Who would've thought we'd reach to over 3,000 followers from all over the world, have countless videos with hundreds of thousands of views, or that I'd still be doing this 5 years later! Thank you all for being here and loving our special little guy! ❤️

23/01/2026

This weekend’s snowstorm has me feeling a level of fear that’s hard to explain unless you live it.

For many families, a snowstorm means cozy nights, hot cocoa, and snow days. For us, as a mom to a medically complex child, it means anxiety about power outages and “what ifs.”

My child depends on refrigerated medication, a feeding pump, a pulse ox, and oxygen. Electricity isn’t a convenience for us — it’s a necessity. A long outage can quickly become a medical emergency.

Today, I’m praying we can find a backup generator to have on standby, because preparation is the only thing that gives me even a little peace of mind right now.

If you’re also a parent of a medically complex or special needs child heading into a storm, here are a few things we’re doing (or trying to do):

❄️ Charge everything — phones, battery packs, medical device backups
❄️ Check medications — make sure refrigerated meds are stored safely and know how long they can stay cold
❄️ Have a power plan — generator, extra batteries, or knowing the nearest place with power if needed
❄️ Keep emergency numbers handy — doctors, pharmacies, medical supply companies
❄️ Advocate early — don’t wait until the power is out to ask for help or resources

If you’re healthy and safe this weekend, please keep families like ours in mind. And if you’re sick, stay home — because for some of our kids, even small illnesses can mean hospital stays.

Here’s hoping the storm passes gently and the lights stay on. 🤍
To every special needs parent carrying this extra weight — you’re not alone.

21/01/2026

Lukas has still been struggling to fight off the sickness he came down with last week. He's hardly slept the last two nights, so this morning he & I loaded up and left the house bright and early at 7am to go to walkins at his peds.

He has an upper respiratory infection and a left ear infection. 😣 she also noticed that both ear tubes have fallen out again. So he'll be on an antibiotic for the next week, and hopefully he'll start feeling better.

Good news is, he hasn't lost any weight with this sickness! In fact he's gained more. He's at 21lb3oz! ❤️

He's feeling miserable, but still looked cute as ever at the doctors this morning. 😍

17/01/2026

The best giggles to start your weekend ❤️

16/01/2026

Lukas is still running a fever this morning, Lacey & Liam are also sick, and mama isn't feeling the best myself. Prayers this passes through quickly are appreciated! ❤️

Lukas has a new bed being delivered today. He had been sleeping in a pack & play but he already tangles himself in his feed ford at night, and with adding a pulse ox and oxygen I wanted to be able to run the cords out the side, so he's getting a mini crib. His oxygen was delivered yesterday but the pulse ox is supposed to be delivered today as well.

15/01/2026

Lukas was up most of the night last night coughing his little head off, I almost didn't send him to school this morning- but he didn't have a fever when I checked so he went because I didn't want to keep him out again already since he just went back.

Unfortunately he was sent home with a fever again 😩 I'll probably try and get him to walkins tomorrow because he truly does sound awful.

Also got a message from his pulmonary team this morning that his doctor went ahead and ordered 0.5L oxygen for him at night and a pulse ox to be worn when sleeping. The nurse had said it would be a little while before they actually delivered it because of the process with insurance, but I got a call around noon from the company that they're delivering it today. Which I guess now is the perfect time to be getting it since he seems to be fighting something respiratory off.

Poor guy was exhausted when we got home from school.

15/01/2026

Big shout out to my newest top fans! 💎

Jodie Goode, Charles Stanley, Michelle Merrick, Crystal Gray, Mandy-Jason Petefish, Fonda Powers, Bea DeLong, Patty Bussell, Patti VanHorn, Jamie Webb, Philip Gray Jr., Kara Hammer, Susie Johnson

Drop a comment to welcome them to our community,

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