JT and I are still in the hospital in Cincy, but basically we're just hanging out until so he can get his regularly scheduled photopheresis treatments on Monday and Tuesday mornings.  JT's blood culture remains negative, his CBC is normal and he's clinically still feeling great.  He is still receiving two IV antibiotics, just to be on the safe side. 

This trip has been a little confusing to me.  I got the call to hurry up and get JT to Cincy and then when we got here they just started antibiotics.  I wondered why we couldn't have just done that in Grove City.  Anyway, after talking with the docs and nurses yesterday I understood better the ...

JT has absolutely been LOVING Kindergarten.  It's been so good to see.  He comes running out of the school everday shouting, "Mommy, look in my backpack at what I did today!"  He just seems to love learning new things and is soaking it all up like a sponge.  He's also making some friends.  I am so happy for him in this arena - it's been long in coming.  Overall my little boy is growing up right before my eyes.  What a blessing - I remember when he was a baby and we didn't buy clothes in the next size bigger because we were afraid he might not live to make it to that size and now look at him.  From the deepest parts of a momma's heart - thank you Jesus!

On the medical front, JT and I are currently staying in room 534 at Cincinnati Children's hospital.  A couple of days ago a little black spot showed up on JT's lip and one on his hand.  After our las ...

Today was JT's 3rd day of Kindergarten.  He absolutely LOVES it!  They are learning all about catepillars and butterflies this week and it's fun each day when he comes home and tells us all about what he's learned.  Sometimes it's still hard to believe that he's in Kindergarten.  How far God has brought this boy!

Today the School Nurse called me at home and it sure scared me.  It ended up being no big deal, but still, just gettting that call is not something I want.  I think we'll have a bit of a learning curve as the two school nurses, JT's teacher, the secretary and principal all get to know him.  I had a chance to meet both nurses today and talk more in depth about JT.  It's hard though, because as soon as I tell them that somethings not a big deal to tell me, it may end up being so.  So we tried to set up some parameters about when to notify me.  Everyone in the school and entire district ...

Hooray!  JT went for his first day of Kindergarten today.  We are all filled with joy and excitement today.  There was definitely a time when we thought public school would not be in the cards.  But today that was not the case.  Our son experienced a very "normal" childhood milestone and for that we are extremely grateful.  I've posted some new pictures that documents the occassion.  I've also included some long over due pictures as well.  Check them out if you have time.

As for JT's medical stuff...his arm continues to heal well.  The incisions are closing up nicely.  I posted a picture of his arm right after he came out of surgery on his birthday.  JT still feels that getting his arm sewed back up was the best birthday present.  We had a wonderful family reunion late at night when JT and Brian returned from Cincinnati.  I had some troubl ...

Great news…after JT’s photopheresis treatment this afternoon, we are homeward bound.  It’s been a pleasantly uneventful few days – some card games, some TV, some tossing the football around the hospital room, lots of talking.  He’s been so great – brave and cheerful to the end of this long stay.  Our night nurses have been good so though we’ve stayed up late, we’ve slept well, and that makes a big difference in terms of how things go during the day.

As for his left arm – he’s moving it around well, lacking only 10 degrees of motion, and the Occupational Therapist believes he will regain this as well with time.  The biopsy site is healing more slowly and we change his dressing twice a day but the healing is steady.

 He’s going to need IV antibiotics around the clock for the next couple weeks &a ...

Hi.  JT continues to do well.  His stool culture came back negative for Rotovirus and C-Diff. Yeah!  Tomorrow the final culture should be back and if it's negative too, then JT will be back out of isolation, which means he can go to the playroom.  He has been shut off this weekend, but did have a fun suprise today when the Occupational Therapist came and said he could still go to the gym while in isolation.  They just had to wipe all the equipment down before JT's therapy and then afterwards as well.  It was good for him to get out of the room and walk a little bit to the gym and then once he got in there he just went crazy - getting all sorts of energy out.  He had the O.T. cracking up.  He did a great job using his arm.  We actually had taken the ace bandage off before therapy to encourage him to use it more.  From an infection standpoint, we still put antibiotic cream on this biopsy site and cover it with a b ...

Hi Everyone.  JT is doing well.  He's fast asleep now (8:20pm) and I'm hoping he quickly adjusts back to this type of sleep schedule as morning Kindergarten will be starting for him in just a few weeks. 

So, the Orthopedic Surgery resident took off the dressing this morning.  The incisions look great - very little swelling and no blood or seeping.  The place though where the Dermatology team took the biopsy was a little red and seepy.  The doc looked at it and recommended we put bacitracin on it twice a day.  The docs have also removed two of the big gun antibiotics that JT was on, leaving him on just Ancef three times a day by IV.  They think they'll leave him on this IV antibiotic for at least 4 weeks.  The home care team will come and teach me about how to administer it at home.  I'll most likely just leave him accessed as he'll need this antibiotic three times a day.  Luckily it ...

Hi Everyone-Jodi here now.  JT’s surgery went really well today.  It was so awesome – there was an opening in the OR at 9:00am today so JT got to get his arm all sewn up by 10:30am.  The Orthopedic Surgeon said the swelling was gone, the lines were clear and straight and he was able to close JT’s arm up without needing the plastic surgery team.  Dr. Wall told Brian that he felt confident JT would get back the full use of his arm, a rare thing where necrotizing fasciitis has been.  He placed several sutures on the outside of his arm but chose not to use any inside as they can be sites for infection.  They plan to take the bandage of ...

Surgery came at 5:30 am this morning to change JT's dressing and it hurt him a little even though the nurse gave him morphine a at 5:00 to get him ready.  Again, JT and I chose not to look.  I am haunted by the glimpse I had of his arm on Sunday, completely opened up as if with a fillet knife.  He is the toughest, bravest person I've ever met - no tears, just some wincing as they peeled off all of the soiled bloody gauze and packed new wads of new gauze around the wound sites before re-wrapping.  If it were me, I wouldn't be able to get my mind off of it, but he just goes about his business, playing UNO and watching TV and building Legos and cracking jokes.

He's scheduled for add-on surgery to close up the wounds tomorrow.  There was some discussion this morning as to whether or not his arm had been given enough time to drain - some doctors thought it was early to close things up.  However, like everything else, it's a balance ...

Brian here from Cincinnati.  The last 24 hours have been critical ones, more critical that I realized in the midst of last night / early morning, and maybe that was for the best. Only now am I beginning to realize the nature of last night's crisis.   We hope that the worst is over now, but JT still has a long way to go before he's out of the woods; the emergency surgery last night was drastic and terrible in its own right.  His little body has so much healing to do.

As Jodi related, his left arm contined to swell as he continued to lose mobility.  Nobody wanted to pull the trigger on the surgery unnecessarily but things moved quickly and decisively once there was talk of potentially losing the arm.  I was stunned.  Thank God they acted when they did.

The doctors have unwrapped the arm twice today.  It was truly gruesome, the worst thing I've seen (visually) in the history of his complex medical jour ...