This morning we had coffee and cinnamon rolls with new friends who seemed like old friends: Don and Dea Moffit who have prayed faithfully for us all year happened to be in town from New York and stopped over to the house – they enjoyed the chance to meet the little boy who has been in their thoughts so often and we enjoyed the opportunity to meet the writer of so many encouraging notes to us. The boys loved having people over: it’s brand new for them.

After our visit, we headed over to the local apple orchard. They were making cider and apple fritters amidst pumpkins and scarecrows and all of the other accoutrements of autumn. The boys and I strolled through the orchard while Jodi stood in line to buy a bag of honeycrisp apples…it was a beautiful day and a wonderful outing, the kind of day I dreamed of during those long weeks in the hospital during the not-so-distant-past. We are ...

Jodi joined Dr. Orange and the other NEMO families for their roundtable this afternoon: when I asked her about it she was sober. She told me it was reassuring to know that there’s a physician like Dr. Orange out there, a man who’s dedicated himself to helping kids like JT. But it was also unsettling. I guess Dr. Orange kept referring to the conference attendees as “pioneers” and referring to our children as “first generation transplants.” He meant it as a tribute but Jodi took it another way, that we’re all just kind of feeling our way in the dark here. I prefer to think of Odysseus.

Dr. Orange spoke to the GI issues too. He’s working hard to figure out why post-transplant NEMO kids have had so much trouble with the D and V. Evidently the NEMO mutation is also present in JT’s gut and this problem has not ...

Tomorrow is a big day: at 1:30 Jodi is joining the other NEMO families and Dr. Orange for a “Webinar.” It’s all too complex for a computer-peasant like me to comprehend but from what I gather it’s going to be a sort of virtual roundtable discussion in which parents may address each other and have the opportunity to ask Dr. Orange questions directly. He’s the guy who is operating an entire lab dedicated to learning about this disease. There aren’t too many of us: some of our children have been through transplant and some are in the middle of it and some are waiting. We hope the meeting proves productive and insightful and encouraging for all of us.

JT’s feeds continue to roll at 60 ml/hr. Seventy would be perfect so we may bump him a little more tomorrow. The rash looks about the same. Grandpa Brown was here this aft ...

Last night JT’s bandage came unstuck and revealed the incision the surgeon made when inserting the new port. That was the first I’d seen it and it’s significant, a reminder that this is still serious business.

Things are about the same medically: feeds running at 60 ml/hr 24 hours a day without any V (thank God), rash looking bad, spirits high. Jodi took the boys to Kraynaks and Lowe’s today and they had a blast checking out all of the early Christmas decorations.  JT gets particularly stoked for Christmas and that’s appropriate, especially since his transplant was on St. Nicholas’ Day. 

A kindly woman recognized JT at Lowe’s and told Jodi that she prays for him every day. Jodi had never met her before…it was a moment that reflects a profound truth about this year: we’ve been c ...

Jodi bumped the feeds up to 60 ml/hr today at naptime and so far, so good. This is great news for his calorie and fluid intake both. He’s also bellying right up to all kinds of food…he spits it all out after tasting it or chewing for a few moments but it’s progress and we’ll take it. I guess he and Justy had a wonderful time running through the sprinkler in the yard this afternoon – it was a hot one here.  He’s so happy to finally be able to play in water, even if it’s just a little bit. 

As Jodi related last night, his rash is truly awful. The sores haven’t opened up into open boils like they have in the past so we’re grateful for that. Still, we’re wearing socks over his hands at night and praying for relief soon. Please join us, and thank you.

Last night I didn’t hook up the feeds correctly at 11:00 pm and JT went 6 hours with no nutrition or water at all. Jodi tried to push some water with a syringe during naptime but he threw up…he’s got to take extra fluids so that he doesn’t dehydrate now that he’s off nightly IV fluids. He’s up to 55 ml / hr. tonight and we’re really hoping that it goes well.

Today he went for Honey Bunches of Oats cereal in a big way, “chomping them right up.” He may have even swallowed a few flakes, who knows? We’re just excited to see him so interested in food.

Heather and Matt and Carter stopped over for lunch and we had a sweet visit this afternoon. It was great to hang out with them and the boys were pumped to have visitors, especially a visitor Carter’s age. We are so much enjo ...

Wow. That about sums up our evening. 

After a morning and afternoon of hanging out around the house, we loaded up the bikes and the Burley and headed north towards Franklin to the trailhead of The Sandy Creek Trail, part of the Allegheny Valley Trails Association. It was, by a wide margin, the best rails-to-trails ride I’ve ever seen.

We started at the Belmar Bridge over the Allegheny river. It was incredible. More dramatic bridges with dramatic views followed. Then the path took us through an old railroad tunnel – a long one. The boys loved it and we did too.   On the way back a porcupine along the trail graced us with a view of his backside for our viewing pleasure. It was quite an adventure and the boys were stoked.

Medically speaking…JT’s rash seems to be in ano ...

JT continues to heal up well. He seems to have no pain from his incisions and he can’t lift up his shirt and exclaim “No central line!” enough times a day. It’s great. After I got home from school we boys wrestled and tackled each other on the couch for a good hour. I love having boys. Tonight we went for a spin on the bike trail; JT was quick to point out “there’s a three-quarter moon, Daddy!” and he was right on. We shot a few goals at the soccer fields and then three deer ran right across the path in front of us.

JT has launched into a new endeavor he calls “pooping on the potty.” This has been impossible until now because of the relentless D from which he’s suffered and he’s taking right to it.

Please pray for his skin…the flare-up had been res ...

I couldn’t wait to get home from work today. When JT first saw me he said, “Daddy, look!” and pulled up his shirt for me to see…no more central line! No more catheters hanging down past his waist, no more mesh tank top to keep the lines safe and contained, no more clamps and caps to worry about – awesome. We all celebrated by tackling each other on his bed, jumping off the couch onto pillows, and turning up the music loud for a dance party. JT modeled his dragon Halloween costume for us and he and Justy took turns roaring like dragons. Good times.

Then we had a quick cereal dinner and headed down to McConnell’s Mill for a hike. The boys are growing up fast. Gone are the days when we needed to bring backpacks or strollers: they’re both turning into tough little hikers, scaling rocks and climbing over downed trees without mis ...