Round 2 IVIG Final Days 3 and 4
Day 3 went off without a hitch. Peyton came along again, and we had a visit from an soon-to-be Eagle Scout who was working on his service project. He was collecting pictures and things from children who were patients in the hospital for his time capsule.
Day 4: Started the day off in the waiting room- he wanted to play CARS bingo- his idea.
Peyton sat with him for part of the day- he wanted to watch the ipad games, too. When Hunter's BP machine started, he said, "Don't worry, Hunter...it will be ok." So precious.
We came home after picking up Paige from soccer camp, and I let him relax and play a few games on the computer. We have been limiting his physical activities for the past week due to the IV in his hand- but since they took it out today, I thought I could let him play a bit more. I told him to turn off the computer when Peyton woke from his nap. He did it on his own and then said, "I want to ride my bike!" I told him I needed to change my clothes and to put his shoes and socks on. I came out a couple minutes later and there he was...shoes and socks on. Can't remember him ever doing that on the first instruction.
He went out to grab his bike from the garage and he came back in and said, "Mommy, look at this smile!" He had the cheesiest grin and I just wanted to hug him to pieces.
I judge inflammation (as do many PANDAS moms) by looking at the eyes (dilated pupils are indicators of brain dysfunction). When Hunter is in a flare, his pupils are so big; you can't even see the color to his eye. From Monday to today, I have watched his eyes become more alive, more present, and have more color. The pupils have shrunk.
I know all of this hocus pocus talk seems hard to believe, and Peter and I both don't want to jump to any conclusions or get our hopes up that IVIG has worked. We know in fact that it might NOT work.
However, today I had a happy, happy boy. He did not have one instance of aggression. The computer died once, the ipad died, he had to give back my phone...each of those episodes that would have normally turned into a rage was just a frustration. A normal, everyday kid not wanting to give up his favorite items. My cousin texted me last night about her son giving up the ipad, and how long he was upset about it- it made me feel so much better and reminded me that ALL kids can have breakdowns!
After we rode bikes for awhile, Hunter ran to the door and asked to watch CARS. I told him it was too pretty of a day to be inside, and he went in the house. Instead of slamming the door like usual, or turning the TV on anyways, he reappeared a few minutes later with his basketball. "Mommy, I'm going to shoot baskets," and walked towards our driveway in the back. Had to pick my chin up off the ground and follow him out to watch him shoot some hoops.
Again, all of this could be coincidental. It could be he was just tired of being cooped up for four days watching TV and playing electronics. It could be the new basketball we got a few weeks ago. It could be just intrinsically wanting to make mommy happy by following her directions.
But it could also be the start of something so amazing, so beautiful, and so long-waited for....
recovery.
We came home after picking up Paige from soccer camp, and I let him relax and play a few games on the computer. We have been limiting his physical activities for the past week due to the IV in his hand- but since they took it out today, I thought I could let him play a bit more. I told him to turn off the computer when Peyton woke from his nap. He did it on his own and then said, "I want to ride my bike!" I told him I needed to change my clothes and to put his shoes and socks on. I came out a couple minutes later and there he was...shoes and socks on. Can't remember him ever doing that on the first instruction.
He went out to grab his bike from the garage and he came back in and said, "Mommy, look at this smile!" He had the cheesiest grin and I just wanted to hug him to pieces.
I judge inflammation (as do many PANDAS moms) by looking at the eyes (dilated pupils are indicators of brain dysfunction). When Hunter is in a flare, his pupils are so big; you can't even see the color to his eye. From Monday to today, I have watched his eyes become more alive, more present, and have more color. The pupils have shrunk.
I know all of this hocus pocus talk seems hard to believe, and Peter and I both don't want to jump to any conclusions or get our hopes up that IVIG has worked. We know in fact that it might NOT work.
However, today I had a happy, happy boy. He did not have one instance of aggression. The computer died once, the ipad died, he had to give back my phone...each of those episodes that would have normally turned into a rage was just a frustration. A normal, everyday kid not wanting to give up his favorite items. My cousin texted me last night about her son giving up the ipad, and how long he was upset about it- it made me feel so much better and reminded me that ALL kids can have breakdowns!
After we rode bikes for awhile, Hunter ran to the door and asked to watch CARS. I told him it was too pretty of a day to be inside, and he went in the house. Instead of slamming the door like usual, or turning the TV on anyways, he reappeared a few minutes later with his basketball. "Mommy, I'm going to shoot baskets," and walked towards our driveway in the back. Had to pick my chin up off the ground and follow him out to watch him shoot some hoops.
Again, all of this could be coincidental. It could be he was just tired of being cooped up for four days watching TV and playing electronics. It could be the new basketball we got a few weeks ago. It could be just intrinsically wanting to make mommy happy by following her directions.
But it could also be the start of something so amazing, so beautiful, and so long-waited for....
recovery.
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