9/3 - Sam's Journey - Day 266

And just like that, the school year has begun. So much has happened since the last time I posted. There is a lot of good stuff happening, so I'll try not to miss anything.

In my last post, I talked about the school meeting, and we were waiting on some decisions to be made. Those decisions did come through, and I'm happy to say that they were exactly what we were hoping for. We wanted Sam to continue his rehab, because according to the research he is coming to the end of the time where his biggest strides in recovery will be. (Even though we have seen that Sam has refused to work within the confines of pretty much everyone's guidelines of what should have happened, we don't want to lose this momentum.) In the school districts here, there is a homebound program for students who are unable to be at school for health reasons. However, there were some significant challenges with Sam's situation because of where he is in rehab. I won't go into all of the behind the scenes details, but thanks to some incredible support by the administration at our high school, Sam will be able to continue in rehab for a full day, and still receive the homebound services from our district. This means that as of this past Thursday, SAM IS OFFICIALLY A STUDENT AGAIN! He is currently working on finishing up 2 of the 4 required classes he didn't finish last year because of the accident. He has actual homework this long weekend and is probably only one of about seven students in the state over the moon about this fact. I asked him if he was happy to be back in student mode, and he said, "Oh yeah!" We're keeping tabs on how his injuries impact his learning, and we will have another meeting to evaluate where he is now and set up plans on where he is headed. 

Sam doing homework. He's baaaaack.

On Friday, Jim went to the monthly care conference at rehab. When I got home, he asked if I had read the notes from the meeting. (Um, no. Teaching?) By all accounts, Sam has retained his rock star status, and is working on meeting the goals they are setting for him. There is something that he's been taking to rehab that he should not bring any more:  his WHEELCHAIR. He is walking everywhere while there, and they continue to work on transfers and just a greater move to independence.  The only time he's using the chair at home is when he's eating because it facilitates the whole process. At rehab, they're also working on steps and redeveloping a more natural gait. All good news, people!

Medically speaking, he's had one appointment and has a couple more coming up. On Thursday, he had a follow-up with the nephrologist. If you've never had the necessity of working with a kidney specialist, our experience has been that they operate on a plane of consciousness that far surpasses the average Loeffler one. If you recall our adventures in Kidneyland in December and January, Sam was tearing through all kinds of dialysis equipment, and managed to baffle even these titans of higher-thinking, and decimated just about every treatment they tried with him. However, the doctors eventually prevailed, and got his unruly kidneys back in line. At his last office visit, the docs didn't do too much, and frankly Sam's kidneys are just dandy, thank you very much. With all of the other recent interruptions to his schedule, we were viewing this appointment mostly as a source of irritation and were going to insist that it be the last.

Because I'm at school, Jim is pretty much stuck with all of the extra doctor visits and whatnot, and the texts started rolling in shortly after the appointment time was scheduled. "Blood draw." "Urine Sample." "Losing Patience." Fantastic. As you might imagine, teaching class while all of this other stuff is going on is not tremendously easy to navigate. I waited for the bell to ring to end class and checked my phone again, only to read texts in a much happier tone. Apparently, the doctor came in and was so blown away by the progress Sam had made that he couldn't believe it was the same kid. Later on Jim told me that he kept going on and on about the faith we had that he would get better, and how we never gave up. In the end, Sam's kidneys are indeed (clinically) fine, and we are now released from nephro. But in processing all of this, maybe the reason for the visit wasn't just a simple run-of-the-mill follow up. What we considered an annoyance to us may have had a completely different purpose. This doctor hadn't seen Sam since early Spring, and for all he knew was still immobile, non-verbal, and in a state of semi-renal shutdown. His reaction was unexpected and completely out of character. This boy's incredible recovery continues to astound the same medical professionals who had their doubts about any quality recovery. (And, that, I am guessing is the greater reason for this visit.)

As for the other upcoming visits, next week, he has a visit with a neurologist who will evaluate whether or not he can come off the anti-seizure medication he's been on. We're hoping for a yes, since we've seen no evidence of seizure activity, but we'll let the experts weigh in on that first. And on the 23rd, he has the long-awaited ENT visit. We are hoping to get some answers about why he's not making as much progress on swallowing and suction as we'd hoped. Good, bad or ugly, we just need some answers.

Finally, it's good to mostly be back in a schedule. We're not quite there yet, for a variety of reasons. The first few weeks of school are always grueling for me, and consequently for Jim whose schedule also picks up in the fall. Sarah started classes at Senior and is settling into her routine. We may be starting up the meal train again if I can find the time to figure out exactly what we need and when.  We're super busy over here, and we know you are, too. Thanks for your continued prayers, and for taking the time to catch up with what's going on here. Peace to all of you as you embark upon your own fall adventures!