Quick Update

This morning, Chris' quick 8am appointment turned into a 2.5 hour event... first we got a lil delayed in new brunswick traffic.. but that just made us 5-6 minutes late... But Chris started walking with walker to the building, then down hall a bit and was so fatigued from the walk... He hasnt walked much since his discharge from hospital (not to mention barely walking in the hospital because of infection and weakness) Anyways... I got him a wheelchair and we got to the suite.. 10 minutes later they tell us Dr Strair is upstairs... Sooo we go upstairs... we see Jackie and then Strair and Jackie.... His bumps are all gone or shrunk to very small size... Jackie noticed a bump on his lower back, but Jackie and Strair wonder if its a biopsy or spinal tap site... They asked about his leg weakness... and we straightened out his insulin... The doner is still not scheduled... I guess they are working on getting him cleared by his doctors also (otherwise it should be a phone call for a date) Jackie said coordinator said they might not have more info til monday or tuesday cus of the holiday.............................. So.... that was pretty much it.. but they asked us to stop at the front desk to get 4 appointments scheduled... so i thought we were out of there and then guess how long it takes to get 3 tests and an appointment with Strair scheduled.??? a long time.................. Sooo... here is what our schedule looks like..... Friday we go to robert wood univ. hospital for 11:00 for a spinal tap and then he will lay flat for an hour and then get anastesia and have MRI of entire spine and brain (he just had MRI of brain on Friday)... then saturday morning we go to JFK and have petscan of body... he has to fast and drink barium in the morning... Then Tuesday we have a follow up with Strair at 830am and then off to JFK for mugascan (heart test) and pulmonary (lung function test)... the mugascan and pulmonary are required for pre-transplant to make sure heart and lung are at ok function... Strair wants to see spinal fluid to make sure there is no fungus or anything before transplant... anyways... i dropped chris off.. got him settled and went to work... visiting nurse came in the afternoon... turns out to be someone i know... her family went to saint helenas.. and her brother is jeanie's husband brian's best friend... small small world... anyways... we are off for a few days.. enjoy thanksgiving and then tests friday... saturday we might have some visitors... and possibly chris's dad and brother.. maybe christine and mike and ben.. maybe jeanie and mer this week... we will see.. nothing confirmed.. but anyways.. oh we put up the new christmas tree tonight... so pretty!!! gonna watch dancing with the stars final in a bit... keep praying.. thanks everyone
xoxox jenn