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 tickets and followed my ecstatic child to the entrance of the children's museum.

As we stood at the gate waiting for the clock to tick to ten, JT was bursting with excitement.  When the museum attendant finally said it was time and we could go in JT didn’t even know what to do first.  He just kept saying, “This is awesome!”  Finally he settled on entering this huge ball playing area with lots of tubes and baskets and ropes to pull.  It was really neat.  At this point there were no other kids even in this area.  Next we explored a water playing area with boats and fountains and moving buckets.  Again, very cool.  But JT’s favorite area was yet to be discovered.  Then he spotted it-an inside playground.  He went absolutely nuts.  Soon other children started pouring in and this made him all the more happy.  JT, although still learning a bit about social interaction, gets such a bang out of other kids.  He just lights up inside from all the energy.  It’s a wonderful thing to see and I kept focused on that instead of the many, many other kids that were running all around.  With God’s grace and the joy on my child’s face, it was easy to do.

We spent two and a half hours total at the three museums and probably ten minutes at the dinosaur exhibit during which the whole time JT kept begging to go back to the inside playground.  Being a novice parent to this whole experience, I learned a valuable lesson…hit the educational stuff before the play stuff.  Nonetheless, when telling others about his museum experience he shared all about the dinosaur exhibit so he took in more than I thought.  He wasn’t a happy camper when it was time to leave.  Thankfully the drive from the museum back to the hospital wasn’t long because I heard one question and one question only the whole ride, “When can we go back to the museum?” 

We didn’t get to see Dr. Filipovich this visit, but as promised, our photopheresis treatment schedule was switched to every three weeks.  Hallelujah!  JT’s skin continues to look great.  The results we’ve seen have far exceeded anything we expected as far as cosmetically fixing JT’s skin.  He still has tons of white spots and scars all over his body, but they are shrinking and fading remarkably well.  He looks great.  Everyone who hasn’t seen him in a few weeks just gush about how wonderful his skin looks.  It’s been a long journey with the photo treatments and big steroid doses, coming up on a one year anniversary, but it’s been worth everything it has taken.  We are grateful for Cincinnati Children’s hospital, Hoxworth Blood Center and Dr. Filipovich for making this cutting edge treatment available for our son.

There are still no answers regarding these fevers that JT’s been getting so frequently.  Brian just wrote a long e-mail to Dr. Filipovich to explore more options regarding this.  We’ll let you know if we find out anything more.  For now, we are rejoicing in the normalcy of it all.  What good medicine it has been for our entire family.