Another Week!

We've been soaking up the last of these beautiful summer days and I managed to snap some pictures of the kids in the backyard last week.

Noah's long course of IV Ancef ended yesterday and I've been dreading this for a while, especially with his birthday coming up on Sunday. His line site is still draining crud and we've been silver nitrating it with no improvement. He's battling a cold, and yesterday was a particularly rough day of retching, secretions and worries about aspiration. (Not sure if this is cold related, or due to the small amount of Neocate we have started adding to his Tolerex formula. Time will tell...). Call it that "mommy instinct", but I've been worried about what will flare up once he is no longer covered with the Ancef. We are no longer in the "Noah's doing great" days, but rather in the "he's ok, but things aren't quite right" days. We met with ID yesterday, who wanted to stop the Ancef and have a team meeting down the road to discuss trying the ethanol locks. Not what I wanted to hear. I had been hoping that this would all be sorted out and ready to go. But the appointment was a bit of a jumble, since someone had cancelled it for some unknown reason, and no one was prepared to see Noah there.
Music therapy was a bright spot in the day though!

But it looks like we will be able to breathe for a few days longer and hopefully get through the weekend. Thank you, Doris, for once again being our advocate and buying us another week of antibiotics! We are going to restart him on Ancef this afternoon until next Wednesday. And hopefully by that time, we will have something sorted out with the ethanol locks.

Patience... a lesson I am continually being taught...

Another bizzare thing has cropped up. Noah has developed 2 very noticable brown mole-like spots that have literally appeared on his neck/chest overnight. ID was stumped as to what they might be and have suggested that for now we "watch and wait" to see if they change.

Placing all my cares in His hands...