Brian here. Sorry about the lapse in updates – life moves fast and time is the most elusive of commodities these days. So, Easter and everything after…

 

Easter was great for everyone. Jodi headed to Florida for some much-needed and much-deserved rest and relaxation with her Dad and Charlene. They took good care of her and she enjoyed the break from all the demands of caring for her three boys.

 

We boys had fun too. We went all out, coloring Easter eggs, swimming at the YMCA, wrestling a lot. And on Good Friday the boys received their early Easter present. We were shooting for a resurrection, springing-forth-from-the-tomb sort of theme. So as my Dad boomed out “Up from the Grave He Arose!” as their final hint, JT and Justy ran out into the yard and discovered…a trampoline! Dad had helped put it together while Mom took them to see a movie Thursday night so the whole project was shrouded in secrecy and surprise. It was well worth the effort as I watched them yell and laugh and jump up and down all weekend. They love jumping, and we’re hopeful that some time on the tramp will help JT get rid of some of his excess steroid-energy too. We enjoyed Easter dinner at camp and Jodi was back for a reunion Monday night.

 

Just before Easter, I spoke on the phone with Dr. Filipovich who gave us permission to treat and watch any fever at home for a couple hours before we rush to the ER. We’re very hopeful that this will drastically cut down on the number of nights we spend in the local hospital waiting for his temperature to go down. So good news there.

 

Otherwise, we had hoped to move to an every-3-weeks schedule for photopheresis. However, JT’s skin started to look worse to us during this longer April interval. He was having more “banding,” rings of tightening skin constricting his arms. When Jodi arrived at the hospital this week, everyone else noticed it too – the feedback was unanimous. So we’re back to every-other-week, and it looks like this will be the schedule indefinitely. Jodi is tired and this news was disappointing to her on several levels.

 

But after they got back it was time for Kindergarten registration! JT was stoked. The teachers and staff received him warmly during the orientation and he couldn’t wait to tell me all about it when I returned from work Wednesday. So despite the setback, we’re in a place we could only dream about several years ago – our boy is getting ready to head to Kindergarten in public school. They’ve invited him to participate in a pre-K summer program that will meet 9:30-1:00 during June and July. It would probably be really good for him, but our life of spending days at home together is starting to change.

 

We have an appointment at the Pitt Dental School the first week in May. We’re not sure what treatment they will recommend at this time but we want to get the ball rolling.

 

In other news, Justy will be four on Monday! Hard to believe. In some ways it seems like he arrived just the other day, but so much has happened in four years. We thank God for this special laid-back soul, this boy who brings so much joy and laughter wherever he goes. Life is good.

 

Thank you for checking in on us. I don’t know when lowering the steroid dose will even be in the cards, but I really look forward to that day.  In the meantime, please keep praying for JT's skin.  Thanks.