(Brian). Springtime. This is an especially good one, because as the earth opens up and becomes green, our family’s world is also opening up.

 

Justy turned four on April 27 and we celebrated big. He was a gracious host. The boy loves music, and when I returned from picking up the pizza, I found all of our guests down in the playroom where Justy had given each one a musical instrument and was leading his own sing-along. The first thing he did when he saw that I’d joined the group was run to bring me a little drum before resuming his conducting. He’s a great kid and it’s true what everyone says – he’s growing up faster than I could have imagined.

 

In other news, the boys had their end-of-the-year pre-school picnic last Friday. It was great to see them running around with their school friends, enjoying a social function that would have been out of the question at this time last year. They’re both exuberant, truly throwing themselves into the moment, and I believe that their limitations up to this point have served to heighten their enjoyment of each present moment. Many people live their whole lives without realizing what our boys have learned early: each day is a gift. 

 

Both boys continue to make progress in their swimming lessons and these are a highlight of each week. We’re hopeful that when summer arrives we’ll get some good use out of our membership at the pool down the road. They’re both riding around on bikes and are gaining in confidence, this despite JT’s first major crash coming down a hill on the GC bike trail.

 

JT’s skin is about the same. We’ve resumed an every-other-week schedule for his photopheresis in Cincinnati and this is frankly a drain even as we know it’s his best hope. We hope to find another site, perhaps Pittsburgh, where he could get this done without all the time, expense, and inconvenience of traveling to Cincinnati so often. This will become especially important as he starts school in the Fall.

 

Jodi is taking increasing charge of JT’s home health. I was so proud of her and JT this week as I watched her prepare the meds, draw up the syringes, set up a sterile field, and access a metaport that makes seasoned nurses baulk. JT sat there bravely as the needle went straight into his chest, never flinching. I don’t think this is exactly what either one of them expected out of life, and they’re taking it all in cheerful stride.   

 

As for eating – still no dice. I believe that it’s a matter of control (he certainly comes by that naturally) and that he’ll finally decide to belly up, but there’s no telling when that may happen.

 

We have two important meetings coming up. The first is on Monday when we meet with the school district to talk about accommodations for JT as he starts the summer program and prepares for Kindergarten in a few short months. Everyone we’ve worked with has been absolutely fantastic so far and we look forward to putting a plan together.

 

Our other meeting is scheduled for the beginning of June at Ohio State University. There’s a doctor there who has experience with the dental needs of ectodermal dysplasia patients and we hope for some direction on how to proceed with JT’s teeth. This will be the first dentist we’ve seen who really knows what’s up. Please pray for this meeting and for wisdom as we enter this new phase of JT’s global treatment plan.

 

And just around the corner, our second annual trip to the beach! The boys have been talking about it forever, and with increasing frequency and volume as the date approaches. They can’t wait to see the ocean for the second time, splash in the waves, play in the sand, and fly kites. We’ll drive through the night on Friday after I come home from work; I’ll stay Sat-Monday and fly home Tuesday, Jodi and the boys will spend the week. I’m always aware that we’ll be a long, long way from any medical center who knows us, so please pray for a safe, healthy week, completely boring on the medical front. Also, for safe traveling mercies, especially for Jodi who will drive home solo.

 

And heartfelt thanksgiving for no fevers for a month and a half! We are so grateful that JT hasn’t had to make a middle-of-the-night ER trip recently – what a blessing and a relief and a chance to catch our breath. Please say thanks and pray that this good trend continues, especially as we head south for vacation.

 

Thank you for remembering us and for checking in. We appreciate all of you who keep us in your thoughts and prayers and we hope that all is well in your worlds. We love you.