Brian here - it is so good to be able to offer some good news, finally, and lots of it. Preschool has been awesome. The boys love being with other kids and they’ve also been medically well. Sweet. JT still visits the ER every 2-3 weeks with unexplained fevers, but so far all of these recent episodes have resolved themselves with time and he’s been released from the hospital in the morning. Jodi and he return to Cincinnati next week, and after that trip, he’ll move to a once-every-three-weeks schedule. This is huge, for JT, for Jodi, and for our family. Less time in the hospital, more time at home. Things are finally moving in the right direction.

Hi Everyone.  Lot’s happening here.  The boys returned to preschool this week.  It has been awesome!  They both love it.  JT went on Monday for the first time back and just when we were pulling into the college he said out loud, “Thank you, thank you, thank you Jesus!”   It was really cute.  When his ...

February 18

We’re in Cincinnati for photopheresis treatments and weekly infusions.  Great news is that they’ve dropped two of the infusions, cutting 2 ½ hours of infusion time out.  Yeah!

Hi Everyone.  We received really good news while we were in Cincinnati last week.  Jacob’s immune system function studies came back in the normal ranges.  Based on these studies Dr. Filipovich has given us the green light to put the boys back in preschool at the beginning of March.  I’ll have to be honest here.  I’m being cautiously optimistic about this.

Hi Everyone- Just a quick update...Jacob got another fever Friday night.  This seemed a little different as he was acting a bit more sick than the other times, moaning and throwing up.  Brian took him into the ER and they drew the CBC, blood culture and started the anitbiotics.  His white blood cell count and ANC came back pretty high, which can suggest infection.  The docs at Grove City and Cincy talked and it was decided to admit Jacob for 48 hours of observation and anitbiotics.  He had a low grade fever all night and finally returned to normal Saturday morning.  JT was back to his old self all day and felt fine the rest of the stay.  Brian and I traded on and off all weekend, one staying at the hospital and the other staying with Justy.  We were all a little bummed as we were looking forward to spending the weekend together as a family.  The good news is that our pediatrician in Grove City allowed us to be d ...

Jacob and I drove to Cincinnati yesterday for his photo treatments and infusions.  We arrived around 12:30pm, but were not able to start the photopheresis treatment until 5:45pm.  When we first get to the hospital Jacob gets his port accessed and then they draw a CBC to check his hematocrit level (the number of baby red blood cells).  This takes about an hour or so.  As has been happening the last several trips to Cincy, his level did not come back high enough, so he had to get a blood transf ...

Mommy here...I know I’m in the doghouse with many of you.  The truth is I did write a lengthy update last week at the hospital and then lost it trying to post it.  I am sorry that you all have not known what has been going on with Jacob.  We really are thankful for your continued love, support and prayers.  I fell off the blog wagon before the holidays and just had a really hard time getting back to it (I don’t know why, I just did. – sorry everyone.)

& ...

Yesterday was bittersweet. 

In the morning, we attended the funeral for Jodi's grandmother.  She was 95.  At the service, Uncle Ray spoke of her legacy, of her family.  The room was full of the expressions of her love, in all ages, shapes and sizes.

Back in Pennsylvania, JT didn't understand when we told him that we'd be gone for much of the day, that our St. Nicholas Day party had to be cancelled.  We were all disappointed and sad on several levels.

But we hadn't counted on grace.  When we called home between the funeral and luncheon, JT was beside himself with excitement, shouting into the phone that he'd received a balloon bouquet in the mail, a huge cluster of helium balloons with a candy basket for ballast.  (Thank you to the Fritz family - you can't imagine how your kindness saved the day.  Really.)  &l ...

Hi Everyone.  Too much time has passed since our last blog entry - sorry about that!  I was just reading what the last update I posted said and feeling very thankful for where we are today.  For starters, today marks the 2nd year anniversary of Jacob's transplant.  To be completely honest, we were hoping to be in a little different place than we are, but having said that, we're thrilled that Jacob is thriving and still fighting the good, brave fight!  We are so grateful to our donor who so selflessly sacrificed to give our child life.  I'm also so happy to share that this was the first week since May that we did NOT have to travel to Cincinnati.  I didn't really want to write it until it actually happened and it did!  Jacob's skin continues to soften and Dr. Filipovich felt it was ok to move to Photopheresis treatments 2 days a week, every other week.  What a wonderful change this is for our entire family on so many leve ...

Well...we survived!  There were definitely a few bumps, but overall a good trip.  The first hiccup was that the childlife center (playroom) was closed both days we were at the hospital for special cleaning.  In all the time we've been at the hospital we never knew they did that.  Jacob and I had been telling Justy all about how much fun it is and how they bring you toys to the room and then when you're done playing with those they bring you more.  Thankfully our wonderful childlife specialist, Amy, had pulled a few toys aside for us and we managed just fine.

Second hiccup was that at 7:00pm on our first day at the hospital Jacob accidentally pulled his line out.  Now in the back of my mind I thought that perhaps this might happen, I just thought that it would be Justy that did it.  Jacob was getting his second infusion when it happened and it wasn't quite finished yet so they had to re-access his port ...