6/26 - Sam's Journey - Day 197

One would have thought I'd have all kinds of time to update the blog more regularly now that school is done, but as it turns out, not so much. Either we're running around like crazy people, or I find myself permanently affixed to the couch. After all of the craziness of the last 6 months, it appears that I'm tired. Who knew? I do have a couple of weeks of curriculum work coming up so I don't completely forget how to be a productive human among other humans.

While there are a few exciting things to report with Sam progress, we are in a pretty well-developed pattern of routine. While it's enjoyable to (mostly) know what's going to happen in life, there are always little bumps in the road, most of which have nothing to do with Sam. Are we moving closer to "normal"? That has yet to be determined. Personally, I've always felt that "normal" is highly overrated anyway. 

It has been great to have Sam in his own space, and he really seems to be enjoying it. I can't imagine how hard it was for him to sleep in the middle of where other people were existing. And it was odd for us, too, trying to tiptoe around while he was sleeping in the middle of everything. Have you ever tried to silently do dishes, wash clothes or make coffee?  If not, try it, and let me know how it goes. If you're successful, I'd be interested in learning some of your ninja-mundane task techniques for future purposes. 

As for progress, Sam pretty much has the pureed foods consumption down, and they're starting to introduce some texture to work on chewing. Water intake continues to be a challenge for him but is getting better slowly. We keep trying new ways to see what will work best for him. He is now getting more cognitive activities in his Speech therapy. The bottom line is that he needs to practice practice practice. A lot of the things he's doing will probably become very tedious for him, if they're haven't already. However, that's what's going to keep his forward momentum going. He is doing really well in PT and pool therapy. 

We had a really great family visit yesterday at rehab. All five of us went out to PATE in the morning, and we all had a great time. It was nice to see what an average morning looks like for him, especially for Aaron and Sarah who had not yet been able to see where he spends all his time when he's not at home. We were reminded of how very fortunate we are to be able to have this place available to him. We know that not everyone has this opportunity, and we are grateful for it. I complain from time to time about the ridiculousness of the insurance and medical billing world, but in terms of taking care of Sam, our insurance has been beyond excellent. My heart breaks for the people who do not have that alternative.

We got to see pool therapy and a little bit of speech time. During pool time, we got to be a part of therapy while he played frisbee. He got us a little wet, which I think was his main goal for the day. Here are a couple of pictures, photo cred to Sarah:

What the TV looked like after Sam hit it with the frisbee.

The last couple of bits of news are the most exciting for us. As I say on a pretty regular basis, Sam's works hard, and his progress is steady. Well, the main purpose of our visit yesterday was to get trained on the right technique for supporting Sam while he walks with his quad cane. He's walking, people! In the last couple of weeks, his left leg has decided to get with the program, and he is able to walk for pretty decent distances with very little support. The hallway at rehab is about 100 yards, and he can do a round trip without stopping to rest. We didn't want to start walking at home, which might have brought on some bad habits, but after our training we can now! He basically needs a spotter, and his biggest difficulty is to keep is head up and not look down. This is excellent news, and we're excited to get him up out of that wheelchair!

The other exciting news happened yesterday while in the process of writing this. (I usually start these posts and come back to them throughout the day as I've had to do other, more pressing things. This one's taking a bit longer to finish up.) After I had started this post, he said, "Hey, Mom, look at this," and he lifted his left arm. That is the first really purposeful movement we've seen from this arm since December 12th, and we are thrilled! He's done it several times throughout the day, and as he keeps practicing, he's had to concentrate less and less to get it to move. At the beginning, the look on his face was pretty intense, or something like this.

We are also trying to get him to practice "singing", and like everything else, it's a work in progress. And as church musicians I know have said, practice makes perfect on any organ. This time though, we're talking vocal chords. He is starting to change pitch, and while it's going to be a lot of work, we are convinced he will be singing sooner rather than later.

We have some company coming through this summer. We got to see some longtime family friends for the first time in many years and had a wonderful time. And tomorrow, Grandma's coming with Aunt Billie! We're really looking forward to the visit. Talking of which, Sam would love to have visitors from friends as well. He is busy during the week until about 4:45, and weekends are pretty free. If you'd like to come by (or we could come to you) message me, and we'll set it up!

Thanks for your continued prayers. Additional prayers are requested for:

• the boy who was in a bike accident at the end of the school year and his family. He continues to progress, but is on a journey of his own.
• a friend who is facing a struggle in the middle of a larger one
• a colleague and her child as they mourn the loss of his friend. 
• all those traveling for safety

Thanks so much, friends! Have a great week!