One of Chase's favorite nurses Amy
Chase's first bath
Another of Chase's favorite nurses, Shawn
May 27, 2008
Chase is 5 weeks old today. We were told from day 1 that it would be a roller coaster ride with many ups and downs. A full body x-ray showed calcium deposits along his spine. This along with his short limbs, short fingers, and nose, were used to diagnose him with a rare condition called chondrodysplasia punctata. Because this condition is so rare, the doctors can't really tell us much about his prognosis. We've read some information on-line, and reliable or not, it sounds scary and mentions things like seizures, mental retardation, cataracts, and even death. His biggest issue is his airway and breathing with his small nose. The nurses and doctors have tried everything from the vent to a pacifier with the tip cut off. Currently is just in a little oxygen hood, which seems to be working.
We just found out he'll be transferred to Children's Mercy tomorrow where there are more specialists who can help with his airway issues and Chondrodysplasia. I know this is where he needs to go, but it will be tough leaving there. We're so comfortable with St. Lukes. The nurses and doctors are wonderful. I hope we feel like this at Children's.
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