Lucas O's quilt    (Quilt Completed)

Thank you

Thank you :)

Finished photos

Individual squares

Card

Stitched by: Heather

Biography

Lucas was born 3 weeks early and like his brother decided not to come easy so a c - section happened, we were told there was a 50/50 chance of him having kabuki syndrome and he had the test and 1 to 2 weeks later we found out he did, initially he did very well feeding not to bad and quiet well just reflux and small then in February this year one of my best friends was holding him and he started having a fit in her arms I took him to the hospital and as the week progressed his fits got worse. After a few days he went for an EEG and he got diagnosed with an abnormal EEG then 2 days later he went into a fit they could not stop and he got ventilated and taken to another hospital, they said he had epilepsy and we started trying medications and steroids and came to our local hospital, he did ok not brill but ok then he aspirated and became very ill and ended up coming home on night time oxygen and still fitting every day, we had been in hospital 8 weeks. Then things just became a whirl wind of staying in hospital for fits or chest infections, then in July Lucas started having unresponsive episodes and one day in hospital he got bad and ventilated again and taken to another hospital, the neurologist did another EEG and said it was degrading so we started different medications and while at this hospital we got told he had mild aspiration lung diease. We have been in hospital most of this year now last month only being out for a few days a week max before being rushed in with Lucas having a prolonged seizure or the latest he aspirated on sick, we have also been told the doctors suspect profound hearing problems and sight problems,it's not been easy and he does not sleep brill at night but he smiles at you and you melt.