I'm outta here...

I predicted such a day, full of tears. Jonas just loved every minute that he spent in Primarys, hah! He started with his most favorite activity, physical therapy. We were sad that we didn't have our usual therapist, Donata, but Janine is just as great. To bad Jonas could have cared less, he wasn't having any of it. I think he has serious anxiety and then he can't calm down. There is no amount of soothing, diversion, anything that will make him realize its not that bad. I know I've mentioned all of this before.
Once that was done we waited to meet with Dr. Swoboda. Where I was surprised that Jonas was quite calm until the usual shocking and poking occur. That is to be expected though.

(Driving away, free at last!)

So let's see if I can put our conversation into the least amount of words possible.

Jonas is healthy and at a good point respiratory wise. His chest is growing, obviously not like a normal child, but it is still expanding with the help of the bi-pap. Which is great! Is his medicine working? Hard to say...right after he began we noticed his little hands open up and move more, but now they are back to being tight and hard to move.
It's kind of a question of quality of life vs. quantity. Jonas is happy right now, could he be happier if we try something more or different? Or do we risk giving him a medication that messes up how he feels or his body resulting in hospital stays or worse. The nature of this disease makes every decision so difficult because there is no cure. No one medicine that helps control or stop the progression. What works for one child doesn't mean that it will help another.
What we've decided is to up the dose of his current medication, see how he handles that and then add on a new drug called PBA (sodium phenylbutyrate) From what I can recall this is a drug that has worked great for children who started it right after they were born. Some even gaining so much strength that they go from a Type I to a Type II.
Jonas has progressed like an average SMA kid would. The disease is doing what it does. He might be the type that no matter what drug you give him the disease will continue to run it's course. Or maybe he just needs something else. He has grown like a weed and we just need to keep up with him maybe. I'm happy that it has happened so slowly. At least in my eyes. One day your like, "Hey you can't do that anymore, when did that happen."
Even though there are no answers, it's nice to know that there are people who are dedicating their life to this disease. Namely Dr. Swoboda and her nurse Abby. They work so hard and I deeply appreciate them. Deep down I know Jonas does too. So here is a wonky-eyed picture to remind us all how much we love him and that we try to do the best we can for him and make the best decision.