Tuesday, January 20, 2009

Random babblings...

So I haven't had a real post in some time. I just get busy and mean to, but never get around to it.

Not much going on other than the normal and a couple of minor surgeries for Lukas. Our weeks consist of vision therapy on Monday's and then we usually have one doctors appointment or another at least once a month. Other than that, we are trying really hard to get back in the normal swing of things. Theron enjoys superheroes, any of them, but especially Spiderman and Ironman. Lukas likes playing superheroes with Theron and is really good at saying "piderman" and "i-urnman". They dote on each other too, Lukas wants to tell bubba "wake up" every morning and Theron is really good at holding Lukas hand or helping him navigate through any obstacles he might be walking towards. They both love the park, once it gets a little warmer we'll be at the park pretty often.

Theron started Sunbeams this year! I can't believe he's old enough to be a Sunbeam, but he loves it. When I got him from class Sunday, he had a CD the primary presidency had given all the kids with the songs for this year and told me "mommy, we learned songs about Jesus. I like my class"

And Lukas loves Nursery. As soon as we are out of the chapel from Sacrament, Lukas knows his way to his classroom! A few weeks ago, Kurt was walking him in there and as soon as Lukas was in the door, he shut it in Kurt's face without even telling him bye!

Kurt really loves his job and he's sure staying busy. He's up by 5am at the latest every morning and works until at least 5 or 6pm every night. His company has been so good to us this last year with everything we've dealt with. They want to help with our foundation too, which is huge for us to know they care that much.

Now we're at the point where we're just working to get a handle on Lukas vision. This month and February we are just working through all of the Neuro and Opthamological docs to see where to go from here. We finished the first, and least amount of side effects, drug to help his eyes stop dancing (opsoclonus-neurological disorder caused by cancer) and now we only have 2 more drugs to try, both with significant side effects, more hospital stays and possibly more neurological side effects. All on top of trying to resume a normal kind of life.

We're doing it though and we're happy. We're in a good place, we are moving forward, eyes on the prize!