@TomLegend101@JonComms He's unable to fast at all, so we have to feed him every three hours atm. We take turns to do the tube feeds but we both wake up with the alarms unfortunately. The pump is going to be a miracle as he already sleeps through most of the time, so now we can too ๐ค
@AmiiboAcid@Hikalon Unfortunately that's not how it works for Freddie. Long chain fats (red meat, milk, oil) are toxic to him, he starts having seizures, stops breathing, this can lead to him fallng into a coma and dying. Not all fats are longchain though, those he can have in small amounts 3g a day
Feeding tube awareness week
Freddie's had a tube since he was 2 days old. He's got a rare metabolic condition called VLCADD. He cannot process fats, which means he cannot fast. The NG keeps his intake stable when he doesn't want to feed, which is mostly overnight or ill.
Me : Just a reminder, we've got the most important wedding bit on Friday ๐
Jonny : The cake?!?!
Me : No, giving notice so we can legally get married ๐คฆโโ๏ธ
Happy anniversary @JonComms โค๏ธ
14 years together doesn't seem quite real. I can't wait to become your wife in April and continue making all these happy memories with you and the small ones. Love you forever and always.
@Per_Vertex@JonComms@MystifiedBeef12 It's a inherited metabolic disorder called VLCADD, part of him forever. He may not need the tube forever, but will always need some form of help (even that he'll learn to do himself) as he cannot fast. We're still learning alot about it ourselves, but he's doing really well.
@broken_foreword@JonComms@MystifiedBeef12 He has severe VLCADD, it's not something that can be cured only maintained. Part of the condition is that he can't fast, even overnight. We wake up to feed him 3-4 times a night. As he grows (teens/adult) he might beable to fast longer with help but likely no more than 6 hours.
@Halftroller No worries, he has a condition called VLCADD. He essentially can't process certain fats and can't fast either. He has to have a set amount of feed every 3 hours and if he can't finish it orally it goes in the tube. Also for night feeds when he's alseep so we dont need to wake him