Jodi’s MRI looked completely clear:  thank You God and thank those of you who prayed for her.

JT’s feeds are running around the clock now and he’s tolerating them better – not backing up so much and he’s definitely got more energy now that he’s getting more calories.  He’s got this really cool backpack that he wears around to hold the pump and the feeding bags.  He looks great, like a little mountain-climber.  He’s into it.  He told me he’s a “superhero dinosaur Treebeard backpack e ...

Today wasn’t the easiest one down here but I’m too tired to go into detail.  JT is fine – just a long day.

Jodi’s appointment is also on my mind.  Please pray fervently for her.  This is the first time since we’ve been married that I haven’t been able to accompany her on the yearly trip to the Cleveland Clinic.  Her MRI is at 1:00 and then she meets with her doctor at 2:20.  Please lift her up and pray that we’ll have a huge extra reason to celebrate when we see each other late tomo ...

Thank goodness JT is feeling better:  today we sat in a closet-sized room in the Clinic from 12:00 until 5:00.  If you added up all of the time we were with people, I’m sure it would have been less than 45 minutes.  That’s a long time to wait.  I was proud that he was such a good sport, playing and joking around with me the whole time even though he completely missed his nap.

It’s always good to see Dr. Filipovich.  She continues to assure me that the big picture looks promising.< ...

You were all in for another depressing entry but now you have another thing coming.

It was mostly the same today:  JT on the couch not wanting to do much and saying little except, “Daddy, I really don’t feel so well.”  The nurse came out at 1:30 to draw labs.

I spoke with Gretchen, our nurse practitioner, at around 4:30.  Thankfully, he is not dehydrated and his calcium remains good.  However, his potassium was critically low.

Not much new to report.  JT continues to suffer from relentless D and V.  Both of the people closest to his case were off today but I left a message and I’m going to call the hospital again tomorrow morning– they may want to draw labs and see where things stand before our Wednesday noon appt.  Since they discontinued the IV fluids last week and now he’s throwing up the water he drinks, I’m worried about dehydration.

About an hour into his afternoon nap, I went up to check on him and he was just sitting up at the end of his bed looking terrible and saying nothing.  ...

JT woke up last night with a couple V episodes which hasn’t happened in a long time.  He says, “That makes me sad when I throw up.”  I tell him that it makes me sad too and that one day this will all be over.  I tell him that I wish I could trade with him.  What else is there to say?

It was another rainy day so we stayed inside and watched a lot of shows.  We also played with some Play-Dough but JT was very quiet and mellow for most of the morning and afternoon.

Overcast and rainy here today – JT’s D about the same and the V getting more frequent.  We did make it out to Charleston Falls this evening which was the highlight.  The Park Ranger played us a tune on his Native American flute as we readied for our hike.  It was dusk in the woods on the way to the Falls so the lightning bugs were out and winking at us.  There wasn’t much wat ...

‘bout the same except for more V.  Actually I think the NJ tube moves around and gags him sometimes because he’ll often heave without bringing anything up.  We went through the Wendy’s drive thru today and he asked for milk but then wouldn’t drink any.

I was doing some dishes this afternoon and saw him come over to his toys looking for something intently.  He saw what he was looking for, a pail for storing his PlayDough, picked it up and went to the coffee table where he started to retch into it.  No kid who isn’t even four yet should be that self-awa ...

Pretty mellow today.  JT caught up on sleep and I tried to run his feeds longer to get some more calories into him.  If the D has improved, it’s barely.  Meanwhile, he’s back to the V again.  Dr. Filipovich said yesterday that it will get better, that one morning Jodi and I will wake up and it will be better.  I’m getting impatient for that particular sunrise.

Our Grocery Angel paid a visit this afternoon so our supplies are well-stocked again.

Seems like the doctors are shifting into a higher gear.  They’re getting serious about sending us home which is exciting and a little scary at the same time.  Lots of changes – they discontinued the IV fluids that he’s been getting overnight for forever.  They also changed his IVIG infusions from weekly to every other week.  Finally, they’re also going to start tapering his Cyclosporine over the next 8-9 weeks.

So we’re moving forward but it isn’t all rosy news.  They drew labs for ...