marce

Basic Member Information and more...

Type of Member

Parent

Occupation

Wife to Eug/Momtofour/palliative homecare rpn/

Location

Niagara/ON/Canada

You can list details about your child/ren here.

Children's Names and Birthdays

Bryce: October 30, 2001
Tiara: March 14, 2003
Keagan: March 31, 2005
Judah: October 13, 2007

Child's Background

Judah was initially diagnosed with ARPKD (autosomal recessive polycystic kidney disease) at 25 weeks gestation. No amniotic fluid present. Sent home to wait for a potential still birth or a full term with severe disabilities and probable death within hours/days of birth due to underdeveloped lungs. 30 week ultrasound showed return of amniotic fluid. Born 9 days early(induced) cried loudly!!!
Day 5 diagnosed with co-arct of aorta, repaired on day 9. Severe jaundice potential diagnosis of biliary atresia (poor prognosis), surgery at one month to do Ksie(sp?) procedure.....it was only inflamed liver!!!! woohoo.
Kidneys are polycystic but still working ok, no medications yet :), tube fed due to failure to thrive. 500mls per night, normal food during day. Loves pizza, spaghetti, and hotdogs but only bites of them. Crazy, loving, high energy, "normal" kid (what kid is truly normal??)