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 ...

Sorry that we haven't updated for the last two weeks.  When everything is going well and JT is improving and we're all at home together, it's easy to let the blog slide. 

As usual, there's some good news and some of the other kind as well.  During these last weeks, JT was in the hospital 2 days / week for photopheresis and his other infusions.  For instance, yesterday he and I left GC around 6:00 a.m,, arrived here at noon, and spent the day in hospital room 93  before heading to the hotel.  This morning we were back here at 7:45 a.m. and we'll be lucky to leave by 7:00 p.m. before starting the long drive home.  The schedule sounds brutal, but it's really been wonderful in the big picture:  our family has been together 5 days / week and we've only had one hotel stay a week to contend with. 

All that changed yes ...

Jodi here.  Sorry for the delay in my weekly posting.  It was a non-stop week in Cincy last week and then when JT and I got home for the weekend the time just flew.  Brian and JT left for Cincy this morning.

Last week went very smoothly.  JT continues to be so brave and strong when getting his port accessed.  The biggest news in this arena is that we are going to move JT's normal infusions to the same day as one of his photopheresis treatment days.  This means only three needle sticks a week instead of four.  It will make for a very long day with photo treatments and then 3 hours of his regular infusions, but it's worth it.  His chest around his port is tender and bruised from so much use.  One less needle stick a week is helpful.  And better yet, when the photopheresis treatments decrease to only twice a week, this will mean only two needle sticks and only two full days in Cincy.&am ...

 Hilton Head was absolutely wonderful – good for all of our souls.  The boys made quite a commotion the first time they went out to the beach and saw the ocean.  Everyone in their near vicinity got to share in the excitement.  Justy was fearless and ran right into the water.  Jacob was a bit more reserved about the ocean but warmed up to it as a little time passed.

Short update:  Tuesday's surgery went well and JT now has a "Mickey button" instead of a G-tube.  It's much less obtrusive and he seems to like it.  It's a little loose, so if it doesn't tighten up as it heals they may replace it with the next size smaller next week.  His infusions also went well and everything is still a go to start photopheresis next Wednesday.  We leave this afternoon for South Carolina - the boys are really stoked and we look forward to seeing their faces when they first see the beach.  JT has a wardrobe of high-tech sun protection gear he's anxious to try out.  I'm aware that this is the furthest away we've been since he was born:  the nearest major hospital to where we'll be staying is 2 1/2 hours away.  We have a letter of introduction but please pray that we won't have to use it.  It would be gr ...