It’s been a busy week and a half, especially as we look at separating the family again next week, so that’s my excuse for allowing so much time to pass before updating the blog…

Surgery for JT’s new port went well last week – the most brutal part was the 12 hours of no food or drink before the anesthesia. We were thankful that Dr. Garcia was able to do the procedure – some doctors, you just trust.

They left the port accessed for his now more-frequent IV steroid infusions. Last week he was having mobility issues again; he couldn’t straighten out one arm and left it bent at 90 degrees across his chest, sometimes holding it with the other arm. I got a little worked up, actually calling the hospital three times during his appointment to voice my belief that the doctors needed to step up his treatment plan. They agreed (because ...

My apologies for the delayed update: in my defense, we’ve had a couple false starts and I didn’t want to write until things had shaken out. They took a long time to shake out.

 

Anyway – here it is. JT continues to eat a little bit each day. In fact, he’s up to 15 Cheerios six times a day. For him, this is huge and represents enormous progress and good hope for the future. He also kicked the viral infection. No more D and V; for that we are relieved and very grateful.

 

His skin, however, is no better. At times we believe it’s even getting worse as the severity ebbs and flows.& ...

Home! JT was released from the hospital on Friday afternoon and both he and Jodi were here to greet me when I returned from my class late last night. It was great to see them.

JT is skinny but I was relieved to see him in high spirits. 

Jodi is following a nutritional plan for him, slowing increasing his feeds until he’s taking in more and more calories through the G-tube. His D and V episodes are sporadic – we hope that they’ll subside soon so that he can get back on track. In other news, he has recently swallowed a few dry Cheerios, which is huge for him. We do the “swallow dance” and he’s very proud of his progress. This is a journey of baby steps and we celebrate each one.

Jodi and the boys are over at camp tonight and I miss ‘em. I wrap up the gradua ...

Jacob is back in the hospital. Let me fill in the gaps from the last time that I updated the blog…

It’s been a rough week and a half since I last wrote. Justy was sick for 3-4 days and bounced right back, jolly the whole time. JT started with the D and V and it hasn’t stopped. 

I took him to the hospital last week and our trip was a decent one. We had to stop 4 times during the drive down for D + V issues but the good news once we got there was that his liver numbers had improved to such an extent that Dr. Filipovich cancelled the consult with the liver doctors. Sweet.

Easter was low-key. The four of us celebrated Good Friday with a few holes of Frisbee Golf at Moraine State Park. The unexpected snow was a hit and we took advantage of it to make one last big snow fort in the yard. On ...

What a week. 

Justice got sick first. The D and V had hit him pretty hard by Tuesday and Jodi did her best to keep the boys isolated from each other while takingcare of him. On Wednesday morning she met my sister halfway to my parents’ house and gave JT to her to in an effort to protect him from Justy’s illness. I signed up for a personal day, picked up JT in Ohio on Wednesday after school, and the two of us headed for Cincinnati.

So while Jodi took care of Justy in GC, JT and I logged a hospital day together. Access the port, three infusions. A nurse from GI came to look at how the site around the G-tube was healing. She gave us new instructions for cleaning and dressing – it takes a whole lot longer and the first two times we did it I had to hold JT down screaming and crying, not fun. Thankfully, tonight was much better.&n ...

I taught a class this weekend while Jodi and the boys waited out the snowstorm an extra day at camp. The snow is still heavy on the pine trees behind our house – we’re enjoying the contrast of white on blue-green for one of the last times this year. Winter has been a good season.  Thanks to those of you who have sent encouragement in the face of discouraging news.

Jodi has the cold that I had last week and we ask for prayers that the boys will be protected and spared, especially given JT’s weakened immune system. 

Recently I read perhaps the best quote about life I’ve ever seen:

 “It began in mystery and it will end in mystery, but what a savage and beautiful country lies in between.” - Diane Ackerman   

That's perfect.

Jodi and JT spent last night at the Cincinnati Hannaford Suites and today at Cincinnati Children’s Hospital. His infusions went well and the meds are doing what they’re supposed to be doing – taking out whole sections of his immune system.

The good news is that both the CAT scan and the biopsies from last week look good, no problems. We’ll take it.

We thought we’d be on track for the light therapy treatment to begin this month but the hospital is on institutional time, which means “Hurry up and wait.” Not easy for someone like me who is constitutionally impatient.

The doctors told Jodi today that the areas of JT’s skin which have become pigmented and very hard will probably never soften, will be that way permanently. This was not my understanding of the situation; I thought there ...

The other three members of my family rolled into Grove City this afternoon. Everybody’s home tonight. Pretty sweet. 

JT tells me, “my new belly friend is tender” and he is taking it easy. I was a little surprised how big the tube is that comes right out of his stomach. The doctor told Jodi that it looks to be healing even better than she would have expected. JT seems very protective of it and that’s probably a good thing. 

He looks different. It’s great to see him without that NG tube taped to his face. At the same time, the steroids are making his face swell up again and it’s always hard to see him not quite looking like himself. 

His skin remains troubling, the GVHD still very much present. However, the initial read on yesterday&rsq ...

Just spoke with Jodi: they’re still in the hospital. JT’s scope went well. The doctors don’t celebrate until the biopsies come back negative but everything was visually clear and healthy in his esophagus and stomach and that’s celebratory news to us. The surgeon was able to place the G-tube so JT has gone from having a “nose friend” to having a new “belly friend.” They just started running feeds through it today and Jodi is going to try a bolus feed tonight before he goes to sleep. He was on morphine yesterday and complained of pain this morning but as the day wore on he seemed to get more and more comfortable.

New news: Dr. Filipovich ordered a full-body CAT scan for tomorrow; that’s why they’re still in Cincinnati. JT’s IGM levels are hyper-elevated and the doctors don’t ha ...

Thanks for your prayers. Our weekend together was awesome. We ate pizza, went sled riding, launched indoor balloons, jumped on the bed, hiked at Jennings, made a snow tunnel in a huge drift; it was wonderful. The boys are so good with each other and we enjoyed their company very much. It’s hard to imagine life or parenting getting much better than it was over the last two days.

Tomorrow Jodi will drop Justy at my parents’ house in Ohio and she and JT will head south to Cincinnati again. His scope and subsequent G-tube surgery is scheduled for Tuesday morning. The way I understand it, they’ll go down his esophagus and take a good look around first, taking a bunch of biopsies while they’re at it. If things look reasonably clear, the surgeon will insert the G-tube so that it comes right out through the wall of his stomach.

They wi ...