| Joshua Buller |
| no one knew why. On Wednesday night the doctors told us that they didn't think Josh would make it throught the night. If those weren't the most devastating words I've ever heard. And it was the first time we talked about organ donation. If there was anything good to come out of this I was going to make sure it happened. Thursday came and Josh was still fighting. One of the Pediatric Specialists called Josh his little champion. By the grace of God they checked his ammonia level. It was almost 2000! The pathologists almost threw away the machine because they thought the machine was broken! Now they knew what Josh had but they couldn't guarantee his body would make it. Josh went through dialysis to get his ammonia down but as soon as one thing got better, something else got worse. After 29 days in the hospital which included surgeries, dialysis, blood and plasma transfusions and MANY, MANY prayers we got to bring Josh home. Josh is now almost 6 and attends the Life Skills class in his elementary school. He is globally delayed. Some areas are more delayed than others. Academically he does the best. It's hard to say at what age he is functioning at. In some areas he is not even a year behind, and in others he's at about a three year old level. His speech is one of his lowest areas, academics are his highest. He names about 13 letters and sounds, sequences #0-5 and is working on # 1-10. He amazes me every day. At his last doctor visit in December '03 he weighed 35 pounds. He is on 4 grams of arginine a day and 32 ml of sodium bezoate. He takes 105 grams of Cyclinex2 and 37grams of prophree. He gets 25.8 grams of protein/day (10 natural and 15.8 cyclinex2). Josh has a little sister who is a year younger but is his biggest teacher. Through all the trials there's one thing I've always found and that's this: you always find someone worse off than you. We still have Josh and he is a light in the darkness. There were children in the hospital with Josh who never got to go home. God has truly given each of us a gift and I can only thank him for that. |
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| Josh's Information as of February 2004 |
| Parent: Jennifer Buller Birthday: March 7, 1998 Age at Diagnosis: 5 days old Other diagnoses: None Home town: Wichita, Kansas Siblings: A sister (unaffected) Protein allowance: 25.8 grams per day Development: Globally delayed Meds: Arginine Propree Sodium Benzoate Cyclinex 2 |
| Joshua was born on Saturday March 7, 1998. A healthy baby boy is what all the doctors and nurses said. We went home Monday afternoon and took Josh back to the hospital Tuesday morning after a sleepless night of crying and throwing up, followed by lethargy and difficult breathing. We were admitted to Wesley Medical Center's PICU where no one could tell us what was wrong with our son; all they could tell us was that he was very sick. The doctors performed CAT scans, MRI's, spinal taps and EEGs - all of them came back normal, but our baby was just getting worse and |
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