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A challenging medical journey and a full loving life. Her faith, courage and strength are an inspiration. May her memory be eternal. Oktober 20, 2008-Juli 30, 2015
Our daughter Angelica had her first ‘metabolic crisis’ at three days Now she is a little over four months old, and while there have certainly been bumps in the road, it does not seem like we could have asked for a much better situation. She has an incredibly hearty appetite for her special formula (“power milk”) and is the sweetest, happiest, most easy going kid you could ever hope to see, and has even been letting her mom and dad sleep through the night, pretty much since we came home! She is tough (and stubborn) as well, having survived intensive dialysis at such a young age and showing no signs of damage from the ordeal.
Best Regards, Joe and Toula |
old. Within twenty-four hours of bringing her home from the hospital after birth, she had become so lethargic and unresponsive that we had no choice but to contact the nurse on call, who instructed us to immediately call an ambulance. The staff in the emergency room (thankfully, we live less than ten minutes away from the fantastic resources of the University of Michigan Hospital) were able to stabilize her to a degree, but were very troubled by her ammonia levels and other test results, though they did not know the cause at that time. A conclusive diagnosis of PA was reached by the following day, and after another harrowing four days in intensive care undergoing hemodialysis she was moved to a moderate care wing. We were able to return home about a week after that, once she had regained enough strength, and more importantly, her appetite.
The pediatric genetics staff at the UM Mott Children’s Hospital are a great resource, and having them so close at hand is an incredible luxury that we definitely don’t take for granted. We are also blessed with a very competent and understanding daycare provider–they take everything in stride, whether it is diluting formula as needed, providing medications, or even ketone testing. With everything we have at our disposal, the inevitable problems we are going to encounter do not seem nearly as daunting as they once did.