Jodi is currently driving as fast as she can for the Cincinnati Children's ER.  We've become increasingly concerned about JT the last two days and acutally made arrangements for him to be seen there tomorrow.  However, his condition deteriorated rapidly today:  he's having the D and V more and more frequently - several times an hour now.  He looks emaciated and we're all very worried.  We called and spoke to our doctor and she said bring him down.  Please pray earnestly for their trip, that they can make it the whole way without having to stop along the way at Akron or Columbus Children's where we don't know a soul.

 

He's such a special and brave boy.  As he felt worse and worse today he looked at me and said, "I'm getting through it."  Please pray that Jesus guards him close tonight, that they can help him in Cincinnati, that maybe this will b ...

More vomiting today. We restarted the VFend because of our mold concerns, just in case, and also requested orders for a blood draw tomorrow. We’ll all drive over to GC tomorrow and our home health nurse will meet us there – JT can’t go in the house so I guess she’ll have to do the draw in our mini-van. Craziness. Anyway, Justy and I will stay there to meet with insurance people and workmen: we need a plan to get things fixed so that we can move back in. Jodi and JT will return to my parents’ condo and get ready to drive to Cincinnati on Tuesday for the Wednesday morning appointment at the hospital.

It’s awful to see him throwing up again. My theory is that the NJ tube has migrated out and the feeds are landing in his stomach instead of bypassing it so I’ve asked Jodi to make sure they get an X-ray to check for placement. We ...

It’s a good thing I’ve read The Road Less Traveled by M. Scott Peck and especially his first sentence upon which the rest of the book is built, “Life is difficult.” 

To shorten a long story: we discovered this morning that water from a hot water tank leak worked its way under our new basement floor, causing the new wood to swell and warp. Our contractor pulled up a piece of the wood and showed us water damage on the bottom – then he looked into the crawlspace under the stairs and showed us water stains and moldy drywall. Not good. Not good at all.

Thank God for our friends the Hazys. They cleaned up the worst of the mess immediately and gave us some advice and now it’s a matter for the insurance company to sort out. Actually, my agent interrupted this Blog entry with a call to check in & ...

Mixed report for today. JT started the morning by eating two flakes of Raisin Nut Bran, an event which precipitated a moment of frenzied celebration before he threw up.

D seemed maybe a little better today but he threw up again tonight before he went to bed. Strange – we haven’t seen that in some time.

Justy and I mowed the grass this evening while Jodi and JT headed downtown to a cool printer’s place that is under construction and features…fountains. I guess JT was in his glory and he was certainly animated as he recounted his adventure to me tonight. Good stuff.

You may note that the Blog entries are a little shorter than usual. I’m about 25% into the last Harry Potter book and my best shot at a couple of chapters is after the boys go to bed so I’ll probably be less l ...

Today we journeyed to Pittsburgh Children’s Hospital to meet with the head of the Bone Marrow Transplant Department and his nurse practitioner there, another stop on JT’s national hospital tour. It was the right thing to do. They were courteous and professional and if we have seek help from them it’s good that they’ll already know about our son and his unique story. 

That took most of the day. Otherwise, we’re all tired. Please keep JT in your prayers – the big requests continue to be increased hemoglobin and healing from the D. Thanks.   

 

It’s a long way to Cincinnati and back. JT was great, riding like a champ and proud of himself for sleeping in his own hotel bed.

And it was a good hospital visit, short for the Clinic. His labs are good. The immune studies they drew last week show improvement from the last time they were sent. As the doctors wean down the Cyclosporine, his own immune system is kicking in right on schedule. Some of the cells are present but not working, others are functioning at a very low level, but it all looks like the transplant is on its slow but steady way to the success we’ve hoped and prayed for.

JT chewed up a bite of pizza for the speech therapist before spitting it out – that may seem like a small thing but it’s a huge leap from where he’s been before. Jodi and I plan to be more intentional about working at this therapy at home too. ...

 

 

There has been a slight change in plans…Brian and JT left for Cincinnati tonight and are staying at a hotel near the hospital. Brian is pretty exhausted. After a few minutes of discussion we both concluded that driving to Cincy, staying for JT’s appointment and then driving back home to Pennsylvania all in the same day was completely nuts. 

 

JT really didn’t want to go this time and I don’t blame him. He’s been having so much fun at home.  But as usual, just a little talking it through and he was really very pleasant about it. Brian called from the road and said that JT was in rare f ...