Jakob was born at 32 weeks (eight weeks
early) after I had been in the hospital for six
weeks. We knew about Jakob's kidney disease
before he was born. The Doctors told us he
probably won't make it and asked if we would
consider terminating at 5 1/2 months along. We
said no and decided it was God's decision. At
ten days old Jakob crashed and needed emergency
heart surgery. He was transferred to San Diego
Children's for that. After heart surgery and a
week recovery he was sent back to the original
(Saddleback in Laguna Hills,Ca) hospital to
recover and grow. We watched his kidneys closely
and was told his body would eventually out grow
his kidneys and need a transplant. Jakob has had
a lot of feeding problems and growth problems (a
common problem with renal patients) and ended up
needing a feeding tube. He also has had constant
ear problems (a Kabuki syndrome thing). He has
some hearing loss due to the constant ear
infections he gets.
He is almost four and the size of a two year
old. He takes 11 medicines for renal failure and
daily injections of growth hormone. We will be
adding another medicine to control high blood
pressure (a renal problem) soon. We are also
planning on a surgery to add a port
surgery for his ears soon. Our current situation
is difficult. We struggle to give Jakob the
things he needs and to pay the bills. I work a
lot although I wish I could be with Jakob more.
Jakob's father is still undergoing treatment for
his wrist after having surgery this past March.
Jakob is having a hard time trying to stay cool
in this weather. He has had non stop ear
infections for the last several months. His
kidneys continue to fail and we will have to
talk about transplant soon. He is g-tube feed.
He loves animals and to go outside when able. He
watches NASCAR every week and loves cars.