A quick Addison / Life update for those interested and following along at home.
I've been meaning to make a bigger blog post - but time seems to escape me at every turn. Aside from well, being a parent (priority #1) - Nasuni just released the thing we've been working on for some time (Multi-Site access - http://www.nasuni.com/blog/138-introducing_nasunis_global_multi-site_access
) - a global, secure, single name space NAS with built in data migration, intelligent caching? Sign. Me. Up. Of course, hot on the heels of that, we've still got some pretty awesome stuff coming up, so that's priority #2.
And of course, PyCon - which is somewhere between priority #1 and #2. PyCon 2012 is going to be amazing. We're in the throes of talk reviews on a mass scale, and between the amazing proposals, sponsors, keynotes - I'm floored. This means time? What time? Heck, I'm stealing time at 5:30am to write this - luckily I've been working out (weight lifting, yoga, and now training for a 5k), and eating right (Paleo for the win) to keep things going.
Aside from all that - a lot of friends have reached out to ask me how Addison and the family is doing. The good news is this - weird is the new normal. After several months of hell, depression and getting quite cross with doctors, we've reached the plateau of "hurry up and wait".
Addison's diagnosis - if you want to call it that - is Cerebral Palsy - Hypertonia (http://en.wikipedia.org/wiki/Hypertonia
). This means that she does have a disorder, but it's not one treated with drugs - just physical therapy and frequent checkups. We have a nurse and a physical therapist who come weekly and check on her thanks to early intervention. She's developing well - she's eating baby food, smiling and generally being a normal baby. All we have to do is keep up with the therapy and in theory her brain will "auto correct" as time goes on. She's 17lbs and counting at just about 5 months and just giving hints of crawling.
In addition to the hypertonia, she was diagnosed with non epileptic seizures - again, not something we can do much about other than to love her, keep up with checkups and wait.
So that's where we are - we have a happy, cooing, laughing, happy baby and just have to keep a close eye on her and work through things that come up. It's too early to tell if her problems will have long term consequences. The doctors all hope that she's "error correct" around these things and she'll be OK. But we won't know until we see her development at 6 months, 9 months and 1 year - we still have that "threat" that something could happen - her brain could stop developing, or conditions could get worse.
But its hard to think about that - because I don't see the problems - every day, I pick up and hold and play with a beautiful, cheerful baby who wants nothing more than to chew on my fingers (she's teething) and laugh. I don't think about the future much, because it's unknowable, and we'll cross that bridge when it comes. Sometimes it pops into my head - that worry, that doubt, and I push it to the side and think of what we've already gone through.
As I said in that post: "Because I know as a parent and as a human, it is my job to get up every day and do the impossible. It is my job as a parent to raise the best children — not perfect children — the best children that I can and do right by them. It is my job to teach them, to love them and do everything in my power to either heal them or help them cope with whatever may be wrong. It is hard, but it is not impossible — but the impossible is our job."
Abby is a rough-and-tumbling 4 years old now, and happily flourishing at school - she's so smart is scares me sometimes. My goal, since becoming a parent is to give them the things I couldn't, or didn't have - and to make them better people than I am. Smarter, Kinder, Gentler. All I can do is that, and work in my own way to make the world a better place for them bit by bit. I look at them and I feel age creeping up on me.
In other news, Abby, Addison and I were all baptized this past sunday - the girls were beautiful and everything was fantastic. We were surrounded by family and friends and I could not have asked for more.
So, as they say - "The Dude Maintains". Though I am definitely thinking about rocking the suit (see the pictures) at PyCon :)