The boys really enjoyed hanging out with Aunt Rebecca today, roaring like dragons and swiping her stuff like Swiper the fox.

Jodi did the cap and dressing change this morning and they both did well. JT’s feeds are up to 50 ml/hr and today the doctors discontinued his TPN – instead, they’ve ordered IV fluids to run for 10 hours overnight. This is good overall because TPN can’t be used long-term; at the same time, it’s so great to see him with some meat on his bones and we really hope that he can maintain his weight. 

He still isn’t eating anything at all. Sometimes he’ll lick a piece of food and sometimes chew for a minute and spit it out. We need to get Speech Therapy here soon to work on swallowing.

The D started again a bit today which is discouraging, especially as his nutrition ...

Lots of really great news to report this evening…

First, a group of my fellow teacher-friends have created a band named “Treebeard Brown” and they played a mini-concert for all of the staff to welcome me/us back. They were fantastic. And guess who sneaked in the back to hear “all the instruments?” Yep – Treebeard himself. Jodi brought the boys for a few moments and I was so proud of all of them. JT climbed up on my lap and after every song he clapped wildly and then he’d whisper to me, “Will there be more songs?” Justy hung out on Jodi’s lap and quietly took it all in. These were sweet, sweet moments. Thank you guys – he’ll be talking about it for weeks.

Our doctor from Cincinnati emailed about the biopsies – they show cells dyin ...

JT’s NG tube has been showing signs of wear – we give so much medicine through it that the ports become stretched out: eventually the feeding line won’t stay attached. This means, for instance, that he’ll wake up hollering in the middle of a nap or the middle of the night with his clothes and bedding soaked with feeds that were pumped into his bed instead of into his stomach. Bad all the way around.

So we had to call the home health nurse this morning to come replace it. Not fun at all. She pulled out the old one and JT ran and hid behind our biggest chair and cried and wouldn’t come out to have the new one inserted. I told him to please come out so he could get a new feeding tube and through his sobs he said, “No thank you. It makes me uncomfortable.” Finally he came out but then I had to hold him down while she fished the ...

Another short entry tonight…we’re all back from camp. Still no water here, but the plumbers come tomorrow morning to hook us back up.

JT had a great time at camp. He hadn’t been there in almost exactly a year. It was one of the things we’d talked about most during the dark days at the hospital – going to camp when he felt better. Needless to say, it was moving for us all to see these hopes come true.    

His foot looked better tonight when I changed the dressing – please pray for good news from the hospital tomorrow. Also, we’re slowly upping his feeding rate: he’s up to 40 ml/hr and is holding his own but we still have a way to go.

“The times, they are a’changing…” I head back for my fir ...

It’s ten minutes to midnight and I just walked in the door - I was logging some hours up in room 202 at the High School. Needless to say, I had the place to myself. I feel boring: Jodi and the boys are gone and the best I can come up for a night to myself is work!

Dr. Marsh called about the biopsy. Nothing infectious has grown from the cultures and there was no glaring evidence of anything fungal in nature, so that is great news. The report noted necrotic (dead) tissue and the pathologists at the hospital didn’t know what exactly was going on. So they sent it to the dermatopathologists at the University of Cincinnati to get their impressions. They won’t get the slides until Monday so we won’t hear anything over the weekend. Please pray for good news, that this is absolutely nothing serious at all. 

Jodi said t ...

I must have checked my email 500 times today but we’ve received no word about the two skin biopsies taken from JT’s foot. We had hoped for news today. Please pray for reassuring news tomorrow.

Otherwise, he was full of the business today which is great to see…running around the house singing and wanting to roughhouse with Justy and me. He’s also into reenacting scenes from Shrek, especially delighting in rescuing the princess from the Dragon’s Keep. We three boys rode up and down our street this evening on my John Deere lawn tractor checking out the moon and the first stars. Good times.

He had a brief episode of the V this morning but otherwise is holding steady at 35 ml/hr on his feeds.  They decreased his TPN by about 50% starting tonight, so he'll have to start taking more through the NG tube soon in o ...

Last night was a late one: by the time JT and I got to bed it was almost 4:00 a.m. Thanks to those of you who prayed for safe traveling mercies. We made it home.

So now we’re waiting for the biopsy results. The working hypothesis (and our earnest hope) is that this is a “fixed drug reaction” caused by one of the new medicines he started last week. The lesion has become increasingly big and nasty-looking. We now keep it dressed and covered at all times to allow both the wound and the two biopsy holes to heal.

We had his feeds rolling at 30 ml/hour all day and he did great. I’m going to bump up to 35 ml/hr overnight but we’re not going to get too aggressive. I believe they’ll start to wean him from the TPN towards the end of this week and at that point we’ll start slowly trying to increase the f ...