Hi it's Jodi again with a really late blog entry.  If I don't get the blog updated while we're in Cincy, it's almost impossible to do once we get home.  Sorry. 

Anyway...good news is that Dr. Filipovich decreased Jacobs oral steriods.  He's now on 3ml of prednisone daily and also receives a large IV dose once a week.  The rest of his labs looked good.  It turns out that the immune study labs they drew last week won't be accurate due to the time they drew them (following a certain infusion it falsely elivates things).  So they redrew the blood and we hope to have some info next week and more info the following week.  I asked Dr. F if there was any hope that Jacob's immune studies would come back with numbers they'd be comfortable sending him to preschool with and she smiled and said, "there's always hope."  We'll see.

We had an eventful week in Cincy...our regular hotel was booked for Monday night so we had to stay at this old hotel (but close to the hospital) called the Vernon Manor.  We've stayed here many times before, but have gotten used to the Hannaford Suites.  Everything was going well until a big storm hit in the middle of the night and the hotel lost power.  It was cool enough through the night, but by morning our room was heating up without the AC.  We headed off to Mt. Airy for a hike.  JT showed me the coolest hike that he and Brian had found the week before.  It was really fun, but Jacob overheated on the way back.  I had to piggy back him to the van (he's getting really heavy).  We headed back to the hotel, hoping that the power would be restored and we wouldn't have to climb the 8 flights of stairs to our room.  No such luck.  The hotel was dark and hot and the elevator was NOT working.  Ugh!  We hoofed it up with only 2 stops to rest.  JT was a trooper as he was so hot and tired.  I planned to put Jacob in the bath tub to cool him off, but the water wasn't working either.  Thankfully we had a reservation for the Hannaford for Tuesday and Wednesday nights.  It was only 10:00 am, but we packed up our stuff in the hopes that the folks at the Hannaford would have pity on us and let us check in early.  So we lugged our many bags down the eight flights of stairs and headed for relief.  Thankfully there was a room ready and they let us in.  We enjoyed the elevator ride to the third floor, promptly put the AC on full blast and passed out on the beds.  We definately prefer the Hannaford Suites.

The excitement contiued on our ride home from Cincy.  We were able to get Jacobs long infusion day moved from Thursday to Wednesday, which enabled us to leave for home around 1pm instead of 6pm.  We were making great time until Jacob said, "Mommy, something's leaking."  I turned around to find a huge blood stain on his shirt where his port is located.  He lifted his shirt and the pressure dressing the nurse put on after photopheresis was soaked with blood and blood was actually streaming down his chest.  There wasn't an exit for a few miles so I asked Jacob (amazing kid that he is) to hold pressure on his port until I could pull over.  When I got to the gas station I pulled up to the pump thinking that I'd just have to hold pressure on his site for a few minutes and then I'd get gas.  Well, a half hour later and I still couldn't get his port site to quit bleeding.  I also didn't have any supplies to redress the site.  It was awful....I was using one had to hold pressure and the other to root around the van for anything to makeshift a semi-clean dressing with.  Finally I found a piece of gauze in his feeding kit and used silk tape to hold it on.  Jacob was happily playing with a few of his blocks the whole time.  What a kid.  I finally was able to get gas and get going.  About two hours down the road the "leaking" started again.  UGH!  I pulled over and we went through the whole thing again.  After that stop we made it all the way home with no more "leaks."  Justice and Brian were waiting for us in the yard.  What a site for sore eyes.  It's so joyful when we get home.  Everyone runs for big hugs and Jacob always says, "Isn't it great to be all home as a family."  Absolutely.

Thanks for your continued prayers.