I guess my lateness is becoming chronic.  Sorry.  It's been a busy and wonderful year.  Justy finished up preschool in April and JT just finished Kindergarten a few days ago.  The last week of school JT participated in an end of the year program.  I watched in awe as he stood up front singing, dancing and motioning with such exuberance that it filled my eyes with tears of joy.  There was a time when we thought JT would not be able to go to school and now here he was, amongst a hundred other children finishing his first year.  It was a great day.

The week before Memorial Day Weekend JT, Justy and I got to go to Hilton Head with Brian's parents and his sister Rebecca.  Poor Brian had to stay home and work.  We had a wonderful time.  The boys absolutely LOVED the beach and ocean this year.  They weren't a bit afraid of the waves, which earned them wearing life jackets when it was rough.  One of their favorite parts was scouring the beach for "marine life", crabs, fish, snails, starfish, sand dollars, etc.  If it moved it got scooped into their bucket and then thoroughly examined and poked and proded with sticks and such.  It was great fun and JT tolerated the heat well.  The week after we returned from the beach JT and headed back to Cincy where Dr. Filipovich said we'd done a good job keeping JT's skin protected from the sun.  Yeah!

On the medical front, JT continues to do well.  We have our occasional "bumps in the road" when we have to take him to our local ER or pediatrician for a funny looking spot, but all in all he's been doing exceptionally well.  JT and Brian are actually in Cincinnati right now getting JT's photopheresis treatments.  I'll totally admit that it has been wonderful both physically and mentally to have a break from the every other week trips JT and I have been making for over two years.  It's hard that JT never gets a break, but it sounds like he and his dad are having a wonderful time of it on their trip together.

We are still in the process of decreasing JT's IV steroids.  For years he received a 200mg bolus and now every two weeks they have been decreasing by 20mg.  This week he will receive a 100mg bolus.  Yeah!  If all continues to go well, JT will be off IV steroids at the end of August.  This would be such an answer to prayer.  They continue to monitor JT's IGG levels and if all stays well and begins to stabilize he will remian off the subcutaneous IGG and be able to begin immunizations at the end of the summer.  His skin continues to look and feel awesome.  We are so thankful for the photopheresis therapy and the fact that Cincinnati performs it on children. 

We are looking forward to a summer of lots of swimming.  It's such a good pastime for our family with JT's inability to sweat.  A few days ago we were at the community pool here in Grove City for the first time.  The boys were so excited because there are two diving boards, pretty big ones I might add.  I was so proud of each of them as they climbed the ladder and ran and jumped off without a fear in the world.  They were both wooped after a non-stop hour of this.  They like the fact that they were with the "big boys" in the deep end.  I was a little nervous when JT asked one of the older boys what kind of jump he should do and the boy said, "do a flip."  JT took off booking down the board and promptly did a flip.  He's an amazing child with such a joy for living.  We couldn't be more proud of him.

Thanks for checking in.  Thanks for your prayers.  God's peace and joy to all of you.