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 down there at a hotel. Then early Wednesday morning, JT has his consultation with the GI doctors regarding the surgical placement of a G-tube. His complaints about “something bothering me in my throat” continue so we’re more ready than we’ve ever been to do this, even though I continue to have concerns about the healing process. 

After the consult, he’ll head to the Day Hospital for his subcutaneous infusion. Also, they will access his port to draw a bunch of blood for their continued studies. The last time they drew labs, in December, his liver numbers were off so we hope that these numbers show a marked improvement. We also hope for continued validation that his immune system continues to grow and thrive.

His skin is better overall – the itching is about the same but he no longer has any open sores. The scar tissue is everywhere, even on his face, and I guess only time will tell how permanent this prove to be. Believe me, he is a handsome young man, scars and all.

We have a host of questions for the doctors this time, about his immune studies, about the feeding issues, about the G-tube, about his skin, about dentures, about everything. Please pray that Jodi and JT have a safe trip, that all the medical procedures go well, that his labs are cause for celebration, and that the doctors give us wise counsel. We hope for complete healing someday and pray over our boys every night, that they will have “long, fierce, joyful, healthy, and abundant lives here on earth, and eternal life forever in heaven where all things are made new.”

Thanks for checking in. It’s encouraging to know that people continue to pull for him.