Friday Morning - A Josiah Update

(Josiah @ 7:30 AM Tuesday, May 15th)
... lookin' fine

(Josiah @ 9:00 PM Tuesday, May 15th)
... awake & eyes open in Grandpa N.'s arms

Josiah @ 9:oo AM Thursday, May 17th)
... His EGC scan, also known as the 'Insta-Dreads-Maker-2000-for-those-with-NICU-Haircuts'

Hi Guys

Sorry I didn't post anything yesterday. My 'free' wireless [cough, cough] at home wasn't working so I was prevented from giving you all an update.

So... here's what's going on. Josiah had his EGC (brain) scan yesterday morning. He slept for the entire half hour of the test - amazing, especially when you see the picture of what was on him! They haven't gotten back to us with the results yet. This test was in light of Josiah's seizure-like episode a few days ago.

The bloodwork and cultures came back, and yes Josiah does have some infections. There is a small amount of bacteria in his blood - nothing that has the doctors worried - so he has been started on oral antibiotics. In addition to the yeast infection that he has on his chin, he now has staff infection. Both will be treated topically and thankfully both haven't entered the bloodstream. Also, the incision from his g-tube surgery looks like it might be infected as well (the incision is separate and to the side of the actual g-tube). All along we have never given it a real good look because it's been taped over, but now the doctors know they will keep an eye on it to see how the antibiotics treat the situation.

So please continue to pray for our boy. We are learning now why the doctors have said all along that infections and viruses are going to follow Josiah for the rest of his life. In light of Josiah's infections, our discharge date is most likely bumped back to mid or late June.

Josiah has been sleeping pretty good for the last couple of days - praise God! - but we also know that he's probably more tired because his body is fighting against these infections. I also wanted to let everyone know that we were approved for 56 hours/week of at home nurse care! WooHoo! How good is God (and our health care system)?! This means that as long as there are nurses available, we can get home assistance with Josiah for 8 hours every day. We'll be taking most of that time for sleep, but I'm sure there will be a couple of day shifts so that Marie and I can go out and run errands without having to simultaneously care for Josiah.

Josiah is in the process of being documented and his case will be sent to the National Institute for Health down in the states. The geneticists are in the process of writing up his summary, taking pictures, and so on which is exciting (well, a bit I guess) because NIH is the only place in the world that studies Pallister-Hall Syndrome. Maybe we'll have a life of crazy road trips ahead of us ...

Thanks to Jen & Caleb P. (was Mike there too?) who stopped in to visit Marie yesterday.

In God's Graces.
- Andrew, Marie & Josiah