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July  2002

 

   June        Jakob       August


Jakob's Story

 

as told by his Mom Sara

 

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 and 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.

 

 

 

 
 

 

 

 

 

 

 

 

 

July 2002 Feature


 

 

 

Name: Jakob

Birthday:  July 30

Diagnosis: Kabuki syndrome and renal failure

Interests/Likes: Animals/Nascar and cars

Updates on: Jakob

 

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