Love for Lukas

  • Home
  • Love for Lukas

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

Also look what this boy did yesterday!!! He sat up completely unassisted for over a minute for the first time ever at 4....
22/06/2025

Also look what this boy did yesterday!!! He sat up completely unassisted for over a minute for the first time ever at 4.5 years old!!!

Lukas had a GI appointment at CHKD Monday. He weighed in at 22lbs!!!! He's gained 2lbs since we were there in the early ...
22/06/2025

Lukas had a GI appointment at CHKD Monday. He weighed in at 22lbs!!!! He's gained 2lbs since we were there in the early spring. That's huge for him!

He upgraded his wheelchair this week, too. He's loving the bigger wheels!

Lukas has been doing well. We have his new seizure meds and will be starting them this week and starting to wean off of ...
09/06/2025

Lukas has been doing well. We have his new seizure meds and will be starting them this week and starting to wean off of the trileptal.

His new meds unfortunately will make it hard for his body to produce sweat, and also puts him at extra risk of dehydration. Lukas already struggles to regulate his body temperature due to his syndrome. This summer especially we have to be careful with him in the heat and if we notice he is getting red we have to cool him off with a spray bottle.

That being said, I would like to get him more bamboo clothing as it is thin and comfortable and will help keep him cool this summer. Unfortunately though, bamboo clothing is NOT cheap. I have slowly been getting him a few pieces here and there from Walmarts new bamboo line but also from our favorite Little Sleepies.

If anyone would like to help me get him more bamboo to stay comfortable this summer I have Venmo and PayPal! ❤️

Lukas has recently had an uptake in seizures so we had a 4 hour eeg yesterday. During this eeg, he slept for most of it,...
29/05/2025

Lukas has recently had an uptake in seizures so we had a 4 hour eeg yesterday. During this eeg, he slept for most of it, and when he was awake I didn't notice anything so I never pushed the button for any events.

Today his neuro messaged me with results. He is having seizure activity, sometimes from the left side, sometimes from the right, sometimes from both, that we cannot see. He is also photosensitive now because with the photic stimulation there was generalized seizure activity-also that we could not see.

This being said, we will have a telehealth appointment later this week to change his seizure meds in hopes that we can get this back under control. Please keep him in your prayers! 😔🩵

Long time no see!! My account was disabled in February and I haven't been able to access this page! Luke is doing well. ...
25/05/2025

Long time no see!! My account was disabled in February and I haven't been able to access this page!

Luke is doing well. He has had an uptake in seizures recently though so we go to UVA on Tuesday for another EEG.

Enjoy his pre-k spring photos! ❤️

This is semi-local to us and absolutely heartbreaking. 💔
25/02/2025

This is semi-local to us and absolutely heartbreaking. 💔

We would really love to have a pulse ox for Lukas again. When he's sick or with these seizures he's been having again re...
16/02/2025

We would really love to have a pulse ox for Lukas again. When he's sick or with these seizures he's been having again recently it would be good to have. They're so expensive though. We do have one on our wishlist. If anyone can help with it we would be eternally grateful!! (It is actually on sale right now too!)

Lukas just had a pretty bad seizure. This has been happening a lot more frequently lately. I hope his next eeg can catch...
16/02/2025

Lukas just had a pretty bad seizure. This has been happening a lot more frequently lately. I hope his next eeg can catch something. Please keep him in your prayers!

Pic from school on Friday.

Happy Valentine's Day!! 💌
14/02/2025

Happy Valentine's Day!! 💌

Lukas has his 4 hour EEG at UVA tomorrow. Prayers for safe travels and a good appointment are appreciated!
12/02/2025

Lukas has his 4 hour EEG at UVA tomorrow. Prayers for safe travels and a good appointment are appreciated!

04/02/2025

Sorry it's been awhile since we've updated! It's been a crazy few weeks.

Lukas recovered from his surgery perfectly. Everything was textbook 📕 and we couldn't have asked for a better team. The anesthesiologist listened to our concerns about him being over sedated last time and they did not do that this time. He was already awake in recovery when we went back and ready for a bottle of apple juice!

He's back to his wild little self now, chasing the dogs and his baby sis in his wheelchair 😅

He does have a 4 hour EEG coming up soon because we think he may be experiencing absent seizures. So keep him in your prayers!

Address


Website

Alerts

Be the first to know and let us send you an email when Love for Lukas posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

  • Want your practice to be the top-listed Clinic?

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram