7/8 - Sam's Journey - Day 209

Greetings! It's been about 10 days since I last wrote. I wanted to keep it closer to a week, but we had a care conference and doctor's visit this week, and I didn't want to miss any breaking news, should we get any. Before I even get started, I wanted to let you know that there's a new option for an email sign up for blog posts. (I finally figured it out 7 months in. Better late than never, I suppose.) On the right side of the blog, you should see a place to enter your email address to get an email when I post. 

Now on to the important stuff! Things are good, and Sam continues to move forward. The appointment with the new doctor went well, and it will be nice to have one point person with the many different medical personnel that Sam has. We mostly talked about starting to get some meds out of the rotation and future care. At the care conference, he got more good reports. In OT, they're working on dressing and undressing the top half. This should get easier once that left arm has more control. In the middle of the conference, his thumb started moving, which was new. While writing this, I asked him to give me a thumbs up, and it went up about half way. I'll take it! He's still using the splint at night to help keep everything nice and stretched out. In speech, he is working on different sounds, and his homework is to come up with a word using that sound. He is also working on cognitive activities. Writing activities are going well, and he still struggles with purely verbal cues. For those, he is using strategies to both compensate, and to recreate the connections to the brain.  PT's report was good as well, and he continues to work on walking and sitting among other things. We have to get his AFO (leg brace) adjusted, because he's hyperextending his knee a little bit. So far, he's had no problems because of that, but we'd like to head that off at the pass as soon as possible. Other than that, he's been walking more at home. When we get him off the van, we 'make' him walk into the house instead of rolling. We're sure he's probably thinking, "Jeez, I just got home from work, and they're making me do MORE work." That's us, the consummate slave drivers. 

Moving in a different direction, we know that many of you are curious about how his voice is coming along. Honestly, to not have that voice in this world for this long is a crime. The other night while he was at the dinner table, Aaron walked over to the piano and said, "Sam, sing this note." He played the note, and Sam sang it back. On pitch. He did it again. On the third try, it was out of his range, which is really limited, but continues to improve. Before everyone gets overly excited, though, there is a lot of work to be done. One? Breath support. After holding the note for a little bit, it started to slide down the scale as his breath ran out. This is not a surprise by any means. He has to redevelop that breath support, just like he has had to for everything else up to this point. He also has work ahead of him in terms of vocal mechanics (he has to stretch out those vocal cords back to their previous state) and clarity (he's still somewhat muffled when talking.) We are convinced he will get there, and this tone replication is just another step in that journey. 

Another question I get a lot is about his school situation. Without going into too much detail about his current status, I will say that we will be meeting prior to the 2016-17 school year to make decisions on how best to serve him. He and I talked about it last night and we all know that some decisions will have to be made, and not all of them will have great choices. If you recall, this is my excessively self-motivated child, the one who completed complicated humanities projects way in advance of due dates. While humming a run of 16th notes from a Bach cantata. (Probably the only one in the history of humanities to do this.) Academically, things will be changing, and there is much ground to recover. Last night I asked him what he wanted to happen if he got to choose the outcome, and he was clear. He wants to graduate on schedule with his sister and his classmates. Not knowing all the details yet, I can presume that this will require a lot of work on his part, which will be magnified in difficulty as he continues through his TBI recovery. I don't even know if it's logistically possible at this point, but I can tell you that if anyone on this earth can achieve that, it is Sam. When he was little, we learned early on that he was a very goal-oriented individual, and we even worked to curb that. Now, it has become an essential part of his recovery. As in the rest of this journey, we have no idea where he will land, but we know he will give every effort to meet that goal, and we will be fighting right alongside him.

That is all for now, friends. Thanks for your continued support!