4/10 - Sam's Journey - Day 120

Why, yes. It has been a while since I've written. The last two weeks having Sam home have been wonderful. And, at the same time, it's been incredibly exhausting for us. Jim and I have switched to the role of primary caregiver while he is at home. It took us a little while, but we have a pretty good system set up. It is very difficult though, when you consider all the other things we have to do in the day. Like work. And sleep. A big thank you to everyone who has made the "eat" part so easy! Thanks, also, for waiting patiently for the latest blog entry. And if you're not being patient and just not telling me, thanks for that, too. For as frustrating as some things have been, and for as depleted as we can sometimes feel, we're trying to keep perspective. I found out this week that two different stories of young people close to Sam's age who also suffered brain injuries were not doing well. In one case, the fight is already over. There are plenty of things about what happened to Sam that are excruciatingly difficult, incredibly unfair, and that just downright suck. But we still have Sam with us. Throughout all of this, it wasn't always a given that he would be. We will gladly suffer through the really challenging times, because we know we are some of the lucky ones.

When Sam came home, he had a couple of days before he officially started at the new rehab facility, and even managed to have a follow-up visit with his neurosurgeon. Everything seems to be going according to plan there, so he doesn't have to see him again for another 6 months. We also got to go out and tour the new place, and meet with the people who will be working with him. It's in Anna, way off the beaten path. The facility is on a ranch, and it's both beautiful and quiet. The quiet part is much appreciated after the unrelenting cacophony whose name is Dallas. The van comes to get him at 8 in the morning, and brings him back around 4:30 each weekday. That is a beautiful thing, because it lets Jim and me take care of what we need to here involving mundane life stuff. One of the harder things to get accustomed to has been not being as plugged in about what he's doing each day, and building relationships with his therapists. There has been one care conference already, and we journal back and forth with his speech therapist. We always get a report from Sam on Speech anyway, because that's been the favorite part of his day.  

The least amount of information we have is from OT and PT, so here's what I've got...OT is working on how he can get more of his independence back in basic life tasks like getting dressed, combing his hair, etc. In PT, he's doing a lot of "walking," and it's getting easier to get him to standing and moved to a different spot because he's doing more of the work. (For which my back is eternally thankful.) 

Like I said, Speech is Sam's favorite, mostly because it's where he works on what's most important to him: talking, singing, and eating. He is speaking more and more, and the speech is increasingly easy to understand. His tongue is moving better each day as well. No singing yet, but it will come. The therapist has had him do some humming practice, too. Prior to the accident, Sam would hum incessantly. It was pretty irritating, truth be told. And I had to stop sitting between Sam & Jim, because inevitably they'd both be humming. It might not have been so bad if they'd consulted with each other and hummed the same thing. Clearly, it's a genetic trait. However, after the last three months of relative silence, I am ready to welcome back that habit with open arms. Sam's other favorite part of Speech is eating. He is nowhere near getting rid of the feeding tube yet, but they have been working on trying small amounts of foods that don't require much chewing if any. So far, he has had some applesauce, mashed potatoes, and peach and strawberry yogurt. He was over the moon about the strawberry yogurt. I can only imagine how intensely unhappy I would be, knowing what fabulous food is available to everyone but me.

There's not much other big news to share in terms of his progress. He continues to move forward consistently every day. At the care conference, they gave us a discharge date of November something. That's really good news. They are seeing how hard he is working, and want to keep going with him. There really is nothing limiting how far he can go, although we are finding some interesting things he seems to be missing. We showed him the choir T-shirt from this year, and he said he didn't remember it. At some point, we had been told that sometimes, memories from within 6 months of the injury could be a little spotty. That might be the case with the shirt. Sometimes he doesn't remember things, but then later on he "finds" them. We'll just keep moving on, and trying to find ways to help get back the really important ones. The other thing that we have found out within the last couple of days is that he seems to have lost his sense of smell. To me, it's more intriguing than worrisome. We knew there would be some deficiencies, and frankly, sense of smell is not the worst thing to lose. It's also possible he'll gain it back, too. There are an awful lot of things in this world I would have preferred never to have smelled, so maybe he's the lucky one.

Today, he got to go to church for the first time since before the accident. The primary reason was that he was receiving a gift from the Cover Girls, the quilting group. It is a beautiful quilt, and includes all kind of musical things, including several of his former choir T-shirts. One of the most touching parts of it to me, is that on the back, there is only one panel of a former Tee surrounded by music notes. It is the list of singers from the only All Region concert where all three of the kids are listed. We are grateful for such a lovely gift that was crafted with so much love. Obviously, the outing to church kind of took the wind out of Sam's sails! Thanks, #TeamSam, for your continued good wishes and prayers, and have a fantastic week!