All is ok for now.

It's been a while since I've updated and people are starting to call and email. I forget how many keep up on our little guy.

So the basics are that we've had an okay week. We left the ER on Saturday with the doctors saying no fluid in his lungs and he seemed to mellow out his breathing while there. I'm thinking he finds it more like home because he's spent much more of his little life there than here ;-) We received a call from one of his pulmonary doctors on Sunday night saying the residents had missed some fluid in his lungs so she wanted us back Monday. So Ian & I headed in around noon and didn't leave until 7! Just hanging out in their little room, waiting for the x-ray and an echo. At least we were in a room. The hallways were filled with others actually being treated there. Those both came out ok. The x-ray looked better than it had on Saturday, which is a good thing of course.

Mike and I both met at the Neurosurgeon's office on Tuesday. He didn't even bother to do a head ultrasound, which is what we thought we were there for. He felt his fontanelle and said it was plenty soft and he thought Ian looked good so he said we should come back in three weeks to do the ultrasound. He said he was pretty sure we'd eventually do the shunt but it was worth a wait and watch. We were fine with that but did ask again to make sure there was no possibility that there would be more damage if problems were brewing. He assured us there wouldn't be. So we'll wait.

Wednesday we saw the Cardiologist who said again, his heart is working fine. He said when he's older, stronger and off more of his lung meds, he might put him on a beta blocker to deal with his dilated arteries but for now, he'll just watch him. He said the heart drugs would complicate the lung drugs so best to leave it for now.

Today, I took Lila and Ian both to Dr. Pornchi. Another of his Pulmonologists. Lila sounded good and he took her down from breathing treatments twice a day to once. He said Ian's lungs sounded great and to come back in a month to reassess his.

I actually had a nurse today for the first time this week. They had one come in the morning and another to go to the doctor with us. The morning one had to deal with her daughter's graduation so couldn't stay all day. She is supposed to be the one working with us in the future though. If I didn't have Lila to deal with as well, I'd probably be fine without. It's just hard to keep up with Ian, his feedings, drugs and breathing treatments, while Lila is becoming a fuss as well. Especially when I'm trying to continue to nurse him, which takes forever. He's still fussy on and off when I nurse. But he also gets fussy when feeding through his tube sometimes so I'm not sure what that means. I'll check with the G-tube doctor next week.

Speaking of nursing, he seems to be getting progressively better although today he took a little step back. Sometimes he gets so fussy it's hard to continue to try with him but I just have to. Once he's on, he's happy. I've also been nursing a lot at night. The's a bit tricky to figure out the balance of formula and Mommy Milk. While I don't want to over fill him, I also want to make sure he's getting enough nutritionally to grow. I'll find that out next week at the pediatrician.

Sad to hear the neurologist/neuroradiologist from Amsterdam got back to the doctor who send our MRI to her. She confirmed he does in fact have Bilateral Perisylvian Microgyria. Very sad. I was really hoping she'd come back with something less serious. But it was a good thing I didn't get my hopes up too high.

So I guess that's the basics. I'm honestly seeing double right now because I'm so tired. It's gonna be a long couple of months!