Our "psuedo" appiontment!

Today Lucas had an appointment at PCMC with his GI docs. While waiting in the waiting room for 2 hours a teenage boy recognized my good old TPN back pack on my back. His mom asked what was wrong with Lucas and I told her Chronic Intestinal Pseudo Obstruction thinking's she would give me the weird look everyone gives me when they hear his diagnosis. But to my surprise she said her son has the same thing! PCMC doesn't get very many pseudo obstructions and so the doctors had told them about us when we went to Pittsburgh. For the sake of the family I will not say a lot about what the teenager has gone through but his name is Sheldon and he is 18 years old, and from the outside looks like the typical healthy teenager. He can eat food but says he can never drink soda pop. Every pseudo obstruction patient is different and I have never heard of anyone having as many complications as Lucas so early on in life. But we were excited to finally met someone with pseudo obstruction and ask questions. It was encouraging seeing someone like Lucas who was able to play soccer and basketball and is now 18 and going to college. He showed us his central line which is a port instead of a bivouac, it is surgically placed and is able to get wet to go swimming and to shower with. This is something Lukie could get when he is older. Lukie now weigh 10 lbs 7 oz and 23 1/2 inches long. They are not happy with his growth but they are happy with some of his other improvements. His billi rubin 3 weeks ago was 8.6 and has dropped to 4.6! That is awesome! This has been our longest stay home with nothing scheduled yet. His blood is a little low and may need another transfusion in the future. Even though crazy busy things happen on almost a daily basis we are home and loving every minute!