What makes a good day?

Through the night Artie was in pain.

As I listen to the thunder, I know there will be pain again tonight. The low barometric pressure causes him pain.
Artie lives with neuromuscular scoliosis which, historically results in a limited life span. As he grows, his lung capacity would decrease due to thoratic insuffiecncy.
I say would. We have hope because we were able to get him to doctors that are treating his scoloisis by using a VEPTR II implant. I posted a picture of his xrays here. It attaches to his ribs and spine, holding his rib cage open.
Artie has DS of course, but that is the least of what we worry about. To look at him, you see a vibrant, smiling child with flashing eyes and a sense of humor. You would never know.
What makes a good day? I keep asking myself that. He had such a fitful night full of pain and pain meds and when we got up today I didnt think we would make it. Therapy was hard at first because I had to speak out. The therapist had pulled on his arms yesterday...resulting in a painful night. They were very gentle with him the rest of the day, but some trust was lost and I was nervous when she walked into the room. By 11am his pain meds had worn off. Poor sweet Artie cried and cried. I cuddled him for nap time and he slept while I held a warm compress to his back.

I was so preoccupied when we got to the RMH.
Then a friend came over to play with him.
Then I heard him laugh and every tense muscle relaxed. He giggled and played with friends in the dining room.

Even though that implant hurts when its cold, wet or he is over taxed...even though he has such respitory issues, even though his immune system is low and he goes through so much, he laughs.
When I hear the full belly laugh then I know it is really a good day. Its worth fighting for!
I hear some talk about quality of life. I know they want to put another VEPTR II in the other side and he will have more pain. I know, I know. I dont know how to stop it. All I know is we are taking it one day at the time. And today was a good day after all.