We were at camp and then without Internet last night – sorry for the blog lapse. The good news is that everything is fairly stable. Jodi is 100% better, Justy’s cold never blossomed into anything larger, and JT’s skin is on the mend. It still looks awful, but we can see the pink new skin under all of the calluses which is very promising.

JT is doing great with potty training. Jodi said that he’s had some of the D twice today so that’s definitely cause for concern and a prayer request. He hasn’t had IVIG in 4 weeks which makes him more susceptible to illness than he’s ever been since transplant and though we were very cautious, Jodi did have some D herself last week. Please pray earnestly that there’s no more of this tomorrow.

They decided to postpone yet another week on the IVIG. Our feel ...

Justy and Jodi both seem a bit more on the mend today and JT remains healthy. Please pray that he stays 100% well.

The skin seems a little better – he cries out less often at night and there looks to be bright new skin underneath the large calluses. He’s scheduled to get IVIG in Cincinnati this Wednesday. We’ll see – we hate to take him to the hospital this time of year. Jodi is going to call Monday to firm up a plan.

We’re going to head for camp this afternoon for a belated Thanksgiving dinner with my parents. We have the tree up but as yet it remains undecorated. It’s fun to see how excited the boys get as we start getting ready for Christmas.

Thanks for checking in with us and have a great weekend.  

Happy day after Thanksgiving! We did all right yesterday: Jodi felt lousy and Justy had a runny nose and we did the best we could to keep JT out of their germs’ way. We talked amongst the four of us about how much we had to be thankful for. 

Today we went down to Butler to the big Christmas parade there. It was great fun. This evening we put up our tree and surprised the boys with a big Santa blow-up to spice up their anticipation for our upcoming celebration of St. Nicholas Day, December 6 (doubly special for our family because this will be JT’s one-year anniversary from his transplant day.) We plugged him in our on our deck and he quickly loomed taller than me while the boys jumped up and down inside and ran around in their excitement.

It’s a great time of year. Thanks for checking in on us and we hope that you’re al ...

JT started steroids today. Please pray for skin relief and protection from illness as his immune system will be as unsupported as it’s ever been since transplant over the next week. Thank you.

Today JT took 15 “bites” of water from a spoon during his therapy at The Children’s Institute. And he received his first homework assignment: we’re to take 1% milk and cut it 50% with water and get him to take 15 “bites” of it from a spoon. Also, we’re close to being able to give him bolus feeds during the day at a high enough volume that we can stop the overnight feeding pump.  So he’s making progress, slow and steady. The therapist told Jodi today that JT is “such a hard worker.”

They stopped at the dermatologist’s office too. Dr. Kress was adamant that JT not receive IVIG therapy at home on Wednesday. He believes that the skin flare-up is linked to the infusions and is very concerned about what a reaction might do when JT’s skin is already so bad. So Jodi consulted with Ci ...

The boys and I rolled in early this afternoon and Jodi returned this evening. It’s good to be back together. JT and Justy had a blast at camp. We threw a big pumpkin in the river and chased it down the bank for a while, finally watching in disappear around a bend…when we went back inside, Justy told my mom, “That pumpkin is on its way to Pittsburgh!” A good time was had by all.

JT’s skin is troubling. His arms are bright red and the skin is hot to the touch, almost like he has a really bad sunburn. His hands are swelled up so that you can’t see knuckles. And now he’s developing hard callous-like growths all over. We need to get him to the dermatologist this week.

It will be a busy one – tomorrow he goes for therapy at The Children’s Institute in Pittsburgh at 8:00 a.m. ...

Jodi and JT and Justy spent today in Grove City instead of Cincinnati, and that is reason enough for big thanks tonight. JT’s skin is about the same. Now that the D has finally abated, he’s making strides with potty training too. Poor kid, he hasn’t really had much of a chance until now.

The big excitement of the day was a big old buck that walked right past the house in our backyard. The boys were stoked to tell me all about it when I got home, and JT was really taken with his “BIG antlers.”

Thanks for checking in. 

Great news today.  JT’s IGg level was 1130 which means…no trip to Cincinnati this week! Needless to say, we are very happy and relieved. Plus, it’s a great sign for JT’s immune system function too. The last time it was checked after two weeks his level was closer to 900 so he’s making progress.

Man, what a relief – no trip to Cincinnati. He’ll get IVIG next week, the day before Thanksgiving, and I believe the plan is to have it administered by home health. This could be really great if it works out and we can severely limit the number of times he has to visit a hospital in the winter.

His skin is still bad but now it will have an extra week to heal so we’re hoping that this proves to be a real break for him. Thanks for continuing to check up on us and for keeping JT in your thoughts and ...