Early in 2009, LuLu was diagnosed with Alpha 1 Antitrypsin Deficiency. She had unexplained jaundice, poor weight gain, and a big belly. On March 3, 2009, LuLu's mom, Lizzie, sent this letter to their loved ones...
hi all-
we finally had our appointment with the GI Dr. at Primary Childrens today...here's how it went:
met with PA first who asked us questions, answered questions and examined lu. long story short-she told us that a liver biopsy would be our next step and that a liver transplant is inevitible but there's no way to know now whether it will be months or years...(gulp)
wait for 30 minutes or so for Dr to come in....here's the jist of it:
talks with us for a bit, explains the disease to her audience (me, james, london, nana & grandma were all in attendance- sure grandpas would have liked to have been there too ;)) and went on to tell us she was pleased with the way she looks right now and will not be doing a liver biopsy until she feels it is very necessary. also went on to tell us that not all children with alpha1 have to have liver transplants and can have a normal childhood (sigh of relief, fingers crossed) and for now(and forever) she will have labs done every few months to monitor her liver function. ...also learned that she should NOT be having problems with her lungs, usually a condition much later in life. (londons lucky day!!) we are feeling much more hopeful for london's future, we will live optimistically, and take it as it comes....
thank you all for your love & prayers- we've definitley felt them!
all our love,
lizzie
we finally had our appointment with the GI Dr. at Primary Childrens today...here's how it went:
met with PA first who asked us questions, answered questions and examined lu. long story short-she told us that a liver biopsy would be our next step and that a liver transplant is inevitible but there's no way to know now whether it will be months or years...(gulp)
wait for 30 minutes or so for Dr to come in....here's the jist of it:
talks with us for a bit, explains the disease to her audience (me, james, london, nana & grandma were all in attendance- sure grandpas would have liked to have been there too ;)) and went on to tell us she was pleased with the way she looks right now and will not be doing a liver biopsy until she feels it is very necessary. also went on to tell us that not all children with alpha1 have to have liver transplants and can have a normal childhood (sigh of relief, fingers crossed) and for now(and forever) she will have labs done every few months to monitor her liver function. ...also learned that she should NOT be having problems with her lungs, usually a condition much later in life. (londons lucky day!!) we are feeling much more hopeful for london's future, we will live optimistically, and take it as it comes....
thank you all for your love & prayers- we've definitley felt them!
all our love,
lizzie
**************************************************************
Since that time, LuLu has been diagnosed with advanced liver disease. She has weekly appointments at Primary Children's Hospital to monitor her liver enzymes, nutrition, and various other symptoms associated with liver disease. London's biggest daily battles center around poor nutrition and ascites (major fluid build-up around her vital organs). We still don't know exactly when LuLu's liver transplant will be. Her doctor hopes she can hold out a little bit longer because she needs to gain weight before the surgery. Also, older infants fare better during and after the operation than younger ones do. It all boils down to a delicate balancing act: try to put the surgery off for as long as possible, but not so long that her health becomes much worse than it currently is. Through it all, LuLu continues to be such a happy, sweet baby girl. She's really somethin'. But then again, you probably already know that!
