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

Keep Luke's CSS sister Ruby in your prayers. This sweet girl has had a rough go at it and she's currently in the hospita...
09/06/2026

Keep Luke's CSS sister Ruby in your prayers. This sweet girl has had a rough go at it and she's currently in the hospital very sick again. 😔❤️

Ruby is still dealing with a lot of bleeding, likely from her upper airway so ENT has been in alot to check on it and repack her nares. They think the bleeding is coming from her upper airway still and will address that when they take her back to the OR Friday. Her INR was also very elevated today which is likely another cause of the extra bleeding.
She has been having multiple seizures showing on EEG since early this morning and they have continued throughout the day. They are treating her with more meds for that and will continue to monitor and add more meds if they need to.
She will continue to be kept still with the paralysis medication until Friday when they can go back and look at her airway again in the OR hoping that the stent has done its job. The ENT did tell me that this can take time and many attempts to keep her airway open are a possibility so we may be here for awhile unfortunately. I will likely just make updates in the coming days as needed, honestly it’s just exhausting right now so if you don’t see something daily that means things are just stable. Thanks for all the support and prayers and please keep them coming. ❤️

It's summer !! 😎 Lukas finished preschool last week! He'll be off to kindergarten this fall!
08/06/2026

It's summer !! 😎 Lukas finished preschool last week! He'll be off to kindergarten this fall!

I realized I have not posted anything here for about a month!! I'm sorry friends! Life has been lifing 😂 I don't think I...
05/05/2026

I realized I have not posted anything here for about a month!! I'm sorry friends! Life has been lifing 😂 I don't think I've posted about it here yet, but I am 16 weeks pregnant with another little sister! So most days with 3 littles and pregnancy, I'm just in survival mode 🥴

Lukas has been doing pretty well! He's been able to attend school most days except last week he had a very sleepy week but he also wasn't sleeping well at night. Since we've increased his seizure meds again he seems to be doing better. He's still not gaining weight though and we really need that to happen before the end of June or we are looking at another hospital admission at CHKD + central line placement which we really want to avoid 🥲

Today we have to head to UVA early, but not for Lukas- for mamas first MFM appointment. Because of my history of loss and Luke's genetic condition, I have been high risk my last 3 pregnancies.

I'll try to start posting here more frequently again, as this page is monetized and the little bit of money I occasionally make on a good month here is helpful. Any and all engagement with our content is so appreciated. We love you all and send you many blessings for May!! ❤️🫶🏻

Happy Sunday!! Lukas enjoyed lots of attention yesterday at his mawmaws birthday party 🙂 his seizure meds increased abou...
12/04/2026

Happy Sunday!! Lukas enjoyed lots of attention yesterday at his mawmaws birthday party 🙂 his seizure meds increased about two weeks ago and he is so much more energetic and interactive! Even his teachers reported the same at the end of the week last week! 💙🙌🏼

Happy Easter! 🐣
05/04/2026

Happy Easter! 🐣

31/03/2026

Park days are the best days!!

For a child that they said has "severe dysmorphic features" ... I can't help but think he's absolutely beautiful. Seriou...
25/03/2026

For a child that they said has "severe dysmorphic features" ... I can't help but think he's absolutely beautiful. Seriously so handsome. ❤️

Look who finally got a haircut!!!
19/03/2026

Look who finally got a haircut!!!

Happy st pattys day!! From your favorite Wee Little Hooligan! 🍀💚
17/03/2026

Happy st pattys day!! From your favorite Wee Little Hooligan! 🍀💚

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