We're just over a day into Scott's Lovimax (sp?) treatments. That is the blood thinner they are using. We got Scott in the bath late this morning. It was quite a job, as Scott seemed real apprehensive to leave the room. It is very sad to experience on our end. We can only imagine how sad it is for Scott. Several times he's teared up while we're talking to him.
He has talked some. Very sporadic though. Derry had brought in a wrestling video - (we had him at hospital today, both for Stephanie's benefit and to see if he could spark something in Scott) - that came in the mail. Prior to the bath, they had in on the TV. While we had Scott in the tub room, he was sitting and I was trying to talk with him. He started trying to put words out. They came slowly, one at a time, but repeated every time. He just said "can.....can we....can we put.....can we put on.....can we put on some......" then he couldn't find the word. I asked him a few times 'Can we put on some what?". He'd sigh, not being able to find it. Then I just said "Can we put on some wrestling?" and he instantly just shook his head yes. It made us so happy we laughed.
Then he filled us in on his new frustration word as we got him to walk over to the tub. Today when he got really frustrated, a 'goddammit' would come out. Crystal clear. We've never heard this word from Scott. Most the nurses say the kids tend to come out with curse words in these situations. It's not likely very good parenting, but it made us laugh as well. We'll take any words spoken clearly with clear meaning right now.
Stephanie is just amazing. She constantly tries to get him to respond verbally. He has called for her, with a nice clear "mom" a few times. And, with another wrestling tie, we were in the room, just letting the dvd play. And a match was starting. No one was saying anything, and Scott comes out with "Chris Jerico". Clear as a bell. We looked at the screen, and sure enough that was exactly who had just appeared. Stephanie also called just a bit ago, and said Scott was actually smiling with her talking to him.
A long, long way to go obviously, but at least some positive signs today. He did have a bout where he was trying to get something out, and just couldn't do it except for the first syllables. That will just crush your heart. His motor skills seem to be fine. He's weak, but he managed a few laps around the floor this afternoon, which certainly pleased and surprised the nurses.
I will throw a request out there. Lots of you ask if there is anything Scott may want. Obviously he's not asking for anything at the moment, but if any of you can find some wrestling dvd's, we think that would be great. He was dead immersed into his today, and we know he was watching, not just looking.
I'll never forget the first time I ever met Scott in Aboyne. I spent about 10 days there. The last night I was there, I was on Stephanie's computer emailing back home to let folks know I was headed back. This little 7-year-old walks into the room, and without hesitation, crawled right up in my lap. He just said "I wished you didn't have to go". That was concrete evidence that I knew what Stephanie and I were planning was right and real.
Now, we just have to get that little guy back to his self. Scott has always been one of the most caring kids I've seen in my life. Always worries about everyone else before himself. He'll get a gift card, and has to make sure some of it is spent on Derry. He got diagnosed with cancer 4 days before my birthday, and all he cared about was getting one of the nurses to make sure I had a birthday cake in the hospital 4 days later. I always remember Stephanie talking about how Scott would make sure Rowan, a child at his school in Aboyne who has Down's syndrome, had attention. He'd walk on the playground holding Rowan's hand, trying to make the other kids not pick on him. Scott has always been Stephanie's rock as well. Several times through this battle, he's the one that has told Stephanie "it'll be okay".
Then he gets dealt this deck of cards. Cancer. Shingles. A stroke. I sit here assured even those things have no chance in hell of keeping Scott down. They are not tough enough.
Those things just do not know they have picked on the wrong kid.
I want to thank Brandon's (Scott's schoolmate) dad Darren for stopping by today to see Scott, and for the balloon that plays music (which I'm sure Scott will find a way to respond to Steph playing continuously). Also for the talk we had in the hall. It's now easy to understand why Brandon is the caring kid he is.