Tomorrow is our first go at subcutaneous IG at home. The new home health nurse comes at 9:00. Please keep Jodi and JT in your thoughts and prayers around then. Jodi is a little nervous, I can tell. It’s always an adjustment to have someone new in the house looking after JT, someone who doesn’t know him or his story. Plus, we really want the home administration to go well so that we can keep him out of the hospital.

We also have very high hopes that we’ll hear a positive report from Cincinnati regarding the battery of tests they did last week – we were led to believe that we might hear something by Friday. If I understand correctly, these results will give a comprehensive overview of how his immune system is functioning at all levels.

Thanks for checking in with us – altogether we’re doing well.

The boys are down for a nap and Jodi is out making Christmas happen so I finally have a chance to update the blog…

Wednesday’s trip to the hospital was a good one. It’s obviously a very long day for both Jodi and JT but they are both cheerful and tough. Dr. Filipovich ordered her battery of tests as expected and it sounds comprehensive in all regards: they took over 70cc of blood. The results should be in by the end of next week. We’re hoping and praying for big-time celebratory news just in time for Christmas. 

JT’s skin is still healing slowly but surely and we’re very thankful. His skin is still bright red in many places but the calluses are slowly flaking off and the red coloring looks like healing, not inflammation. That said, he’s developed a mini flare-up right around his belly but ...

Change in plans: Jodi and JT make another long trip to Cincinnati tomorrow. The doctors want to get the blood for his comprehensive 1-year out immune system study. Obviously our hopes are very high that the report is very positive. Please pray with us for great news. JT will also get another dose of subcutaneous IG while he’s at the hospital. Please pray for protection against all the germs there.

The appointment isn’t until 3:00 tomorrow so that won’t put them home until well after midnight again. I’d be grateful for your prayers for safe traveling mercies too. Thanks.

 

 

 

 

December 6, the Feast of St. Nicholas, JT’s one-year anniversary. Thank you, Jesus.

I don’t know why JT has done so well through transplant while other children haven’t. I don’t know why he continues to struggle with awful skin issues and an inability to eat. I don’t know why he will have to walk a difficult path for the rest of his life. Here’s what I do know: we’ve had a glimpse of kingdom healing this year. We’ve heard, faintly, a few bars of music from the place where “everything sad will come untrue.” And we’re left with a weighty gratitude:  for God’s mercy, for kindness, and for the promise that in the end, all tears will be wiped away.

One thousand six hundred and sixty-three years ago the Church celebrated the first St. Nicholas Da ...

Just talked to Jodi – she and JT are on target to arrive here b/w 1:30 and 2:00 a.m. Long day. 

JT’s blood counts look good but they weren’t able to get enough blood to do all of the tests they need. The subcutaneous infusion went well as far as I can tell. He has football-shaped swellings at the two sites where the needles administered the drug – we understand that these can become angry and irritated so we’ll be watching them closely. The main thing we’re praying for is his skin, that there’s no reaction at all, that the healing which has just started has a chance to run its course.

Jodi said they were absolutely appalled at his skin and she had to keep telling them that this is actually a major improvement from where he’s been.

If all goes well, we’l ...

Tonight we’re gearing up for a Cincinnati run tomorrow. Jodi’s got the 4-5 hour drive there, the hospital visit, and the 4-5 hour drive back all in one day. Taxing. 

Please keep tomorrow’s procedure in your prayers. We are really, really, really hoping that the subcutaneous IG will NOT cause another skin flare-up now that his skin has finally started to heal after months of terrible inflammation. Actually we’re hoping the subcutaneous method goes well in all regards: if we can give this at home through the winter and keep him out of the hospital this would be a huge, huge blessing. This would provide an answer to many problems for him.

Thank you for your prayers…we’ll let you know how it goes as the week unfolds.

Good news! JT’s IGg level was over 700 – this is great. Dr. Filipovich likes to keep the trough level over 600 so he’s still in a decent range for this coming week before he’ll get more protection. Here’s the new plan: JT and Jodi will go to Cincinnati next Wednesday where he’ll receive subcutaneous IG. Jodi will be trained on how to administer this at home and if all goes well, we’ll give it once a week here in GC.

This would be awesome for two reasons. First, getting IVIG seems to be linked to the skin flare-ups in a way we don’t understand – seems to be cause/effect. He gets IVIG, he has a flare-up. When he gets subcutaneous IG, the dose is lower and we’re hoping that his skin won’t react. Plus, giving it this way at home will keep him out of the hospital where he&rsquo ...

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 ...