I seem to be falling into the “weekend update” rhythm. It’s actually very nice that our days have some consistency about them now, that we aren’t all over the spectrum in the space of a week any longer…

Jodi administered the subcutaneous IG this week all by herself – no nurse present. I held JT on my lap but my role was that of encourager instead of restrainer, a part I’m much happier to play. The numbing cream seems to do the trick; he’s knows now that there won’t be any pain and takes the needles like a champ. It is a huge, huge blessing that we’re able to give this essential infusion on the couch at home rather than driving to Cincinnati for it all the time.

Jodi and JT are going to Cincinnati this week though. They’re heading south Tuesday night and will spend the night d ...

Wednesday’s infusion of subcutaneous IG was by far the best we’ve had. I didn’t have to hold JT down at all; he sat on the couch bravely and watched The Incredibles while Jodi stuck the needles in. No tears, no thrashing, no yelling. He was afraid, no doubt about it, but in his own words, “I’m getting through it.” The nurse only watched from afar and this Wednesday we’re on our own. 

The skin is still troublesome. It looks better but he’s still got bright red inflammation on his hands and arms and face and the itching is terrible, especially at night. We don’t know what to do. We keep giving him itch medicine but he itches frantically in his sleep. We don’t want to accept this but the only other alternative is steroids and those suppress his immune system.  ...

JT had his weekly subcutaneous IG infusion at home yesterday. We scheduled it for 5:00 so that I could be here; though he’s getting better and he’s certainly a brave boy, he still gets freaked out at the last second at the sight of those needles. I had to hold him down a little which is never fun. However, Jodi drew up all of the meds and actually stuck the needles in and she did a great job. The whole thing transpired under the watchful eye of our nurse and she’ll be back next week to oversee again. Soon, I think we’ll be on our own.

His skin is still pretty bad. He itches much of the day and though the medicines help a little, he struggles to get any relief. We simply don’t know what to do – we lube him down with Aquaphor several times a day and we keep gloves on him overnight and still there’s no improvement and no one seems to ha ...

 

I know, I know – it’s been way too long since I’ve updated the blog. My apologies. As a consequence of my negligence, this entry is a very long one. Before you read further, it may be a good time to get yourself a fresh cup of coffee and settle in…

Happy New Year. We sat around last night after the boys went to bed and recalled the joys and heartaches from 2007. It was a moving experience. And for all of its blessings, Jodi admitted that she wasn’t too sad to see this one go. We’re ready for a new year.

Our Christmas was wonderful in the literal sense of that word: full of wonder. As I mentioned earlier, until this year we’d spent exactly half of our Christmases in the hospital under uncertain medical circumstances. This Christmas broke ...

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.