I wanted to share Colin's update. It's been a ROUGH few months for the whole family. This is from Missy, Colin's mom:

Hey there! Been a while so checking in. I hate that my silence makes people worry! We are still kicking like hell to move forward. As of Sunday, Colin really decreased his need for constant oxygen support. That's actually a large step forward. Still has to have it all night long but that's normal, everybody's respiration drops down during the night time! If he sits still, he is fine. Up and moving he still has to fight to catch his breath and the oxygen is helpful. Unfortunately he still struggles with stairs. On the flip side this keeps him from being holed up in his room as he tends to park himself in the family room, not wanting to go and down to his room. Lots of quality time seeing Colin! :-)
Those two respiratory devices pictured are the cause of more arguments between Colin and I. For the love of God, he is the biggest whiny boo boo baby (yeah I said it Colin) with them. Yes, they suck. And yes, I nag him constantly to do them- they HURT him a lot. The green one is an acapella DH Vibratory PEP Therapy system. He blows into it, has to fight against the resistance and in turn, it then vibrates his lungs and loosens them up. The other one, is an Incentive Sprirometer. This one he inhales and it forces his lungs to open up. I still haven't figured out the "incentive" other then he can breath, haha. We go back and forth about it. "Colin did you do your stuff? Do your stuff Colin. Do your stuff more Colin. Colin you didn't do it enough today. Colin you won't get any better if you don't do your breathing stuff. COLIN DO YOUR FREAKING STUFF" I can't even stand to hear myself anymore, truth be told.
He has gone back to Physical Therapy. Love this picture- working hard, his oxygen tank next to him. What a beast he is. I know he is tired, wants to give up but he has this spark that even if it is dim, is still lit and he still fights. And let me be clear, his life is a 8 on a scale of 1-10 with 1 being easy. Actually, he may be at a 9. On a good note, his pain is a bit better managed which has allowed him to increase his activity level, struggled breathing and all. I love this picture of his doctor, Jason Freedman. Been with Colin since March 2, 2014. He handled Colin's request today, "Can I get a gecko? I want to get a gecko," very calmly and respectfully. Didn't say, are you out of your bleeding mind, NO you can't get a gecko. You can see he is feeling better by is picture. The smile is not a come on smile for your mom Colin but a genuine one. It was nice to see.
Still on so many meds. Had to create a new spreed sheet last week and it is already out of date. It's annoying. It was a long day at CHOP today. Back for an even longer day tomorrow, still just trying to keep the status quo. Look- tons of hard work goes on in our house with mental stamina, mental re-arranging. The summer is ending and that pisses me off, as we haven't even started our summer yet! So we work hard over here to accept the crap show we've been dealt, take it in and let it go. HAVE to let it go. Trust me, that road of anger is always right there, like with neon blinking lights shouting at us, saying walk this way. I won't do it. Many times I drag Dave away from it and often give Colin a look of don't even go there. William is more like me, thinking what's the point in getting angry, it takes too much energy and serves no purpose. Anyway, I have rambled enough, I tend to do that when I am tired. Colin gets meds though the night, needs his O2 level checked as well. I'm gonna go ready for bed! :-)