Hi Everyone.  Sorry again for the lapse of time since the last update.  Everything is good here.  In fact, wonderful.  We've been having a blast this summer riding bikes, attending picnics and parties and swimming at the CC pool down the street.  I can't hardly believe it but JT just finished his 6 week long summer school program to help him prepare for entering Kindergarten in the Fall.  He did absolutely GREAT making new friends, following directions and learning the ropes of what will be expected of a Kindergartener.  We couldn't be more proud of him.

The last few visits to Cincinnati have been uneventful but good.  Two weeks ago the docs had JT's immune studies drawn and yesterday I found out that the results look super.  Today we will meet with Dr. Filipovich to get her take on it all, but they did already discontinue two of his daily oral meds. Yeah!    He is still on ...

Hi…the delinquent blogger here.  So I have some catching up to do for everyone.  Two weeks ago we had a pretty uneventful visit to Cincinnati.  JT needed a blood transfusion and then was able to get two full rounds of photopheresis therapy.  JT’s medical team is not thrilled that he is needing so many blood transfusions but because the photo treatment takes so much volume of blood out of his body at one time it is imperative that he have an adequate number of baby red blo ...

Hi Everyone.  This update comes from inpatient room #9 in Cincinnati. 

JT and I came for his normal photopheresis treatment on Tuesday morning.  When we arrived at 10:00 ...

Hi, It's Jodi again.  Just a quick update about our recent trip to Cincy this week...

JT's appointment schedule was a little different this week.  We had our normal 7:30am appt. on Monday and then instead of a 7:30am appt on Tuesday as usual, we didn't have to be back at the hospital until 12:30pm.  Hmmmm...what to do?  After going over all of our options JT settled on a trip to the Cincy museum to see a big dinosaur exhibit.  I was a little nervous as there tend to be lots of school field trips to the museum, but his heart was set on it so we forged ahead arriving just before the museum opened.  As I expected we were greeted by several school buses and lots of lines of kids.  I said a quick prayer, purchased our ...

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.