"That which causes us trials shall yield us triumph: and that which makes our hearts ache shall fill us with gladness. The only true happiness is to learn, to advance, and to improve: Which could not happen unless we had commence with error, ignorance, and imperfection. We must pass through the darkness, to reach the light." ---Albert Pike




Jaska's sister, Sari is visiting from Houston for a week. She happens to be a pediatrician which is pretty convenient. :) Isaac is now stable enough to be held by others, so Sari got to hold him today (sorry Mom!).

As of tonight Isaac will be on full breast milk. Halle-freekin-lula! :) I'm so glad that is going well. It makes such a big difference for him to be getting the proper nutrition.

He does have a urinary tract infection, so they put him on a 3-5 day course of antibiotics to clear it up. They had a consult about his blood work and agreed that it was low due to leftovers from the Ganciclovir. Yesterday he had his 15th blood transfusion (holy cow!) and his levels look much better today. They may go down again, but they don't think there is anything new causing it.

He's still 4 lbs 4 oz. He hasn't been gaining because he has so much fluid in his body. Yesterday he was so incredibly swollen everywhere. It was so sad--he looked so uncomfortable. They gave him a strong diuretic and today he looks much better.

Because he needed another transfusion and antibiotics, they had to put in an IV. He hasn't had one since his PICC-line came out. It took a half hour to find a good vein and get the IV in. Isaac was so mad. He sucked on his pacifier (covered in sugar water) like crazy. He didn't freak out as bad as he has in the past though and took it more in stride. As I sat there watching, I couldn't help but think of how incredibly strong he is. How much he's grown. He has been through more in his short 79 days, than I will probably go through in my entire life.

He has endured 8 weeks on the ventilator, and 3 1/2 on the CPAP (so far), surgery on his PDA valve, a crazy serious CMV infection/pneumonia, 15 blood transfusions, 2 PICC-lines, multiple ultrasounds, incessant poking and inspecting, not to mention his daily suctioning. Every day (it used to multiple times a day), they stick a tube up his nose and down his throat and suck out all the extra stuff in there so he can breathe. Gross? Totally. But also necessary and judging by his reaction, very uncomfortable.

When Isaac was first born I wondered if my laid back self would turn into a paranoid neurotic--looking at how fragile he was I couldn't imagine letting him go do something as normal (and as terrifying) as playing on a playground. Now? He's not out of the clear yet, and may end up with all kinds of issues that we need to adjust for, but my feeling is that we will just stand back and watch Isaac go go go. There is nothing for me to protect him from. He has shown over and over that there is nothing he can't handle.

I don't know if Isaac will end up with any disabilities. The statistics (and his doctors) say almost certainly he will, but my heart tells me that he will not stop surprising us with what he can do. If he does end up with any disabilities, I want him to be empowered. I want him to focus on what he can do, instead of what he can't. I don't want him to feel sorry for himself, and in order to achieve that, I can't feel sorry for him. I don't want to say--"Hey Jonah, Isaac can't reach the cereal will you get it for him?" Instead, I want Isaac to find his own way to get his own cereal and never be treated as if he can't. It's one thing to help sometimes, it's another thing to always do it for him.

However and whoever Isaac turns out to be I want him to be happy and proud of who he is and what he can do. What he has already accomplished. I want that for all my kids.