We are happy to celebrate Luke’s 2nd birthday. Born with SGS, we feel fortunate and blessed he’s reached 2! He’s on oxygen, taking four different seizure meds, 3 kidney stone meds, requires nebs twice daily, needs to be suctioned 24/7, can never be left alone and is g-tube fed 4 times daily, but all in all, is doing great.
He is very much with us (mentally), knows what’s going on and enjoys the little things in life.
As for us, his parents, we haven’t slept in two years, have aged 10 years, and mentally were not with it, but all in all, we’re doing great! (through it all, we still have a sense of humor:)