9/24 - Sam's Journey - Day 287

I know that many of you are waiting news of the ENT exam yesterday, so here it is: no physiological damage. This is really great news! Once the scope was in, it didn't take very long at all. The doctor had him make sounds, and they watched how his vocal chords moved as he did it. Jim was with him and got to see the video as they did they scope. He said that outside of it being an exam on his own kid, it was really intriguing. He could see the chords on the right reacting when he made sounds, but the left ones were really sluggish. From Sam's perspective, he said it wasn't as bad as he expected it to be, and that it just felt "odd." I think the worst part was probably not being able to eat for most of the day. Here's a pic of me bringing him home after everything was said and done. As you can tell, he is none the worse for wear.

The bottom line is this: the physical capability to regain full use of his vocal chords and swallowing mechanism is there, and we are back to the waiting game while Sam works to make those connections again. It's frustrating to us--and probably him--that it's taking so long. We still feel he will make a full recovery, but the wait is excruciating. We've already established that I'm not a good wait-er, and how my mind goes into overdrive during the waiting. That's when "what-ifs" go on the attack, and doubt creeps in. After the last 9+ months, you would think I would have learned by now that none of that is helpful. Sadly, not so much. I do know that Sam will not quit working until he is satisfied with where he is, and his standards are insanely high. He and God are on this, and I'm just going to stay out of their way so I don't mess up their plans.

Thank you all for the kind words and prayers as we maneuvered through our day. They were much appreciated. You've still got it, #TeamSam!

Other than that, it was a pretty mellow birthday. We had dinner together and all four of us were together and bonded over the new TV version of The Exorcist. Make of that what you would like. While it wasn't overly exciting by some standards, it was extraordinary that we are able to celebrate this day at all, considering everything that has transpired. For all of you who took time to make their day special with messages and gifts, thank you! All things considered, it was a very good day.  

To wrap up this entry, I'm including some pictures that Sarah took. As you can tell, he's still a big (not) fan of selfies. Peace to you all!

                          

9/18 - Sam's Journey - Day 281

It's been a relatively quiet couple of weeks since I've last written. We're slowly getting into the routine of school. In the meantime, we passed the 9 month mark of the accident. We'd love to have a solid week where there isn't something pulling Sam out of rehab for even part of one day, and it looks like that might happen the last week of September. Last week we had some more testing for school. As part of that, they want to see how he reacts when he gets tired or frustrated, and I'm interested in hearing what they say when we meet in October for the big meeting to make an official long-term school plan. Sam does get tired more quickly than he did prior to the accident, although his stamina has increased throughout his healing. He is still sleeping as I write this at 9am. (Naturally, as soon as I typed that, he woke up.) Sleep is an essential part of the TBI recovery process, and whenever he is able to grab some extra shuteye, we certainly let him capitalize on that. We have yet to see him react negatively to excessive frustration though, and I'm curious to see what he does for others when they test the limits of his patience. If they really want to irritate him quickly, all they'd really need to do is play a looped recording of loud, screamy children. That seems to be his trigger point!

Other than the school testing, Sam saw the neurologist about coming off the Keppra. They want to get some more info, EEG's and whatnot, to make sure there is no seizure activity, and if that's clear, we can start the weaning process. I'll keep you posted on that. He occasionally has minor headaches. They usually last for very brief bursts of time, as in less than a minute. You could almost time them with a second hand, they are so short-lived. My understanding is that this is pretty common with TBIs, and I only wish my headaches were that cooperative. 

Yesterday, Sam was able to spend some time with a good friend he hadn't seen in a very long while. It's hard to coordinate visits with his schedule and everyone else, and I'm so glad they finally had some time to reconnect. I'm hopeful that he is able to do that more frequently as time moves on, as one of the major pieces of his life his is working to recover since the accident is the social one. The majority of his social life revolved around school, choir and youth group, and having been out of those circles for so long has been pretty isolating for him. This is no way an indictment of anyone reading this! It's just one more piece of the puzzle we're trying to put back together. My latest comparison to the accident is that it's as if Sam had his arms full of laundry when the accident happened. Everything went flying, and ever since then, he's been trying to pick it all up and put it in the right place. A lot of people are helping him and handing him things, and he's got a lot of it put away where it belongs. There are still some of those elusive socks, the ones that always seem to disappear, and often the best ones, that he's trying to find. He's still looking, and he still has an army helping him. We know he'll get there!

We've had a couple of non-health struggles regarding the recovery, particularly in the arena of billing and insurance payments. Not surprisingly, when I had all kinds of time to call people this summer, there were very few issues I had to deal with. Now that I'm locked into the daily school schedule, everyone's made a concerted effort to get uppity. Things that were covered earlier in the year in their entirety are now being applied to a deductible that I'm reasonably sure we've satisfied about 72 times by now. (I'm not saying we've paid it, just that we can't owe it more than once.) On one bill, I did a little bit of digging. Without going into too much detail about 'who done what', someone billed us $14,000 for a month's supply of something (in our opinion, way overpriced*.) Insurance allowed only about $2,000* of that and called $700* our responsibility. (They paid 100% on an almost identical bill earlier in the year.) I just don't know what people who have really bad insurance, or those who don't communicate as--shall we call it 'persistently'?--as I do. The system is definitely broken, and it's virtually impossible to have any kind of significant medical procedure without exposing its shortcomings. We'll figure our issues out, and I'm just having a personal pity party. It's just exhausting, that's all.

One other main point of concern is happening this Friday. This will be a momentous day for a couple of reasons. Many of you may already realize that the 23rd is Sam & Sarah's 17th birthday. This would be a big day in an average year, and this has certainly not been one of those. We have much to celebrate. The other event of note on Friday, is that Sam will have the long-awaited ENT visit. Because what says 'Happy Birthday' better than having someone shove a tube down your throat to check out your insides? Regardless of the cruddy timing, we are looking to get some answers. What is going on there is what is affecting both his eating and vocalizing. These are two of the most important things in this child's life, so as you can imagine, we are eager for the results. To break it down, if there is no physiological damage, that means Sam is not yet re-creating the connections he lost in the brain injury and will continue to work in rehab to do that. If there is some physical damage, it will be determined what, if anything, will be done to repair it. After talking about it, Sarah asked, "So which one do we want?" And we have no answer. Neither is good, and neither is bad. It just is. And this is the source of my anxiety. 

Throughout this whole process, Jim and I have been relying on our strengths and letting each other take charge of the situations where those strengths will get the best results. For example, in an emergency situation, I'm your go-to gal. (See "Feeding Tube Falls Out," April 2016.) I'm also your "Don't-Mess-With-My-Kid-Or-It-Will-Not-Go-Well-For-You" person. (You know, just for future reference.) However, when it comes to procedures when we have this giant unknown hanging over us, Jim's the man. For example, when it came to putting the bone flap back in, a major medical procedure where we just had to wait, I had to be at work. If I had sat there waiting with him, I'd have been a nervous wreck. My mind just works itself over from one hypothetical situation into another, and then I'm no good to anyone. I'm already doing that about this ENT visit, and so it's a good thing I'll be at school all day, although you may want to make sure my students and coworkers have survived! We would certainly appreciate your thoughts and prayers that day, (the procedure is at 2pm) and that whatever the results are, that Sam continues to heal. We know he will get that voice back, and fight like hell to do it. (And to eat a cheeseburger that hasn't been pureed!)

That's all for now. I will post when we know something after our Friday visit. Have a wonderful week. Thanks for your continued prayers!

I don't have a lot of recent Sam pictures. I do have this one, however, of the wheelchair taking a break while he is at rehab. Olivia seems to be enjoying it, though.

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!

8/14 - Sam's Journey - Day 246

It has been a month since I posted the video, and the subtle (mostly) messages that a blog entry was sorely lacking have been received. Naturally, after a summer that started off smooth sailing with a lot of necessary rest after the crazy year we had, the last part has been insanely busy, and has succumbed to Murphy's Law. (Clarification: Sam is fine.) For pretty much the entire month of July and August thus far, we've been dealing with doctor visits, birthdays, out of town visitors, phone calls, meetings, roofers, A/C problems, baby rabbit infestations, 

seriously, me trying to get into my car the other day

chimney removal, floods, bugs, insurance, incorrect bills, broken down cars, school starting, locusts, boils. Oh, wait. Scratch those last two. I got confused for a minute. I did want to wait until a couple of things happened so I had something more official to report to you. So here we go...

Overall, Sam is doing well. He continues to progress in almost all areas. He finally got his let brace adjusted, and he did not have any injuries related to the knee hyperextension. He keeps moving forward with physical and cognitive goals, although he may have hit a small bump in the road. In speech they have tried a variety of different things to develop swallowing and suction, and there really isn't as much progress as they'd like to see, so he will have an ENT appointment to see if there's something going on in there physiologically. That's certainly not great news, especially because these things are related to eating and singing. But as you've probably already guessed, we are not giving up on finding a solution to what's going on. And, if it is physiological, the potential of fixing it is almost easier than having to recreate those brain connections. Adding to the stress is the fact that we have to wait until September 23rd. (Sam & Sarah's birthday.) I'm asking that you keep this situation in your prayers as we move forward.

One of the two big things to which I referred earlier was a big meeting to discuss plans about how to handle Sam and school. I am pleased to let you know that Sam is officially enrolled in Plano again. (Maybe I'll stop getting those calls from Dallas about the STAAR exam now.)  We are still making a lot of decisions, but the meeting was incredible. We are grateful to the massive amount of staff that was there to support Sam. In fact, there were so many people there, we had to move from the conference room because we didn't fit. We are waiting on some evaluations and a few other things, but we should have a plan shortly. We're trying to work out everything while he is still in rehab. Sam's goal for school is clear, however. He wants to graduate with his sister and his friends on time in 2018. If anyone can do it, it is this kid, and we will do everything we can to help him achieve that, for as long as he's not compromising his recovery. 

The second thing I wanted to talk about was his follow up visit with the neurosurgeon. His last visit was in March right before he started his current outpatient rehab program. I was in the middle of a delightful inservice about the new teacher evaluation system, and I was texting with Jim to see how it was going. He texted, ''Lots of people coming in to look at him." When I asked why and he didn't respond, I kind of flipped out a little bit. When he finally replied (which, in his defense was about 3 minutes later) he wrote, "They're all marveling at the progress he's made." The MRI was showing nothing new, and the doctor said that if something was going to show up, it would have by now. We also talked about him possibly coming off the Keppra (the anti-seizure drug) since he was put on it preventively in the first place. It looks like that might be happening sooner rather than later, so that's some good news!

Hopefully, that holds you for awhile, because school is starting, and I expect to have no life again until about Thanksgiving break. I will write as I have updates, but I'm guessing the updates will but much more brief. Thanks for your continued thoughts and prayers for Sam & his recovery. I would also ask you to lift up:

• for all of us as we work through all of the things going on at Casa Loeffler. It's been crazy, and we'd like not to be!
• for Aaron as he heads back to Colorado this week--provided we can get his car started!
• for Aaron, the little boy who suffered a brain injury on Christmas evening. Tomorrow (Monday) he has a neurosurgeon appointment and CT and they are hoping that the fluid has gone down so he does not need shunts. Prayers for good test results and continued healing would be appreciated
• for Ben, the boy who was hit by a car while riding his bike and suffered a TBI - continued prayers for healing, and prayers of thanksgiving for really awesome progress! He is starting the 7th grade and is doing really well! (Way to go, Ben!)
• for Tyler, they young man who suffered a TBI in a car accident prior to Sam's accident, and for his mom. He continues to face many challenges in his recovery. Please pray for him that he can find the right treatment, and that his mom can get the support he needs. 
• for a co-worker and his wife who just had their sixth child.
• for all teachers as we start off another school year.

Finally, a few recent pictures of Sam.

Sam after the marathon meeting with his principal

7/15 - Sam's Journey - Day 216

It's been a week since my last post, and we continue on. There's not much news, other than some of his meds are being weaned off, which is great. 

Rather than bore you by talking about the same things I've talked about before, or giving you a tutorial on how to puree a cheese steak, I'll instead point out that three days ago, we passed the seven month mark since the accident. Flipping back through the blog, it is unreal how much we have forgotten, how much Sam has had to endure, and how much he has overcome. Consequently, to commemorate this milestone (it's not like there's a 7 month post-craniotomy section at Hallmark) we would like to honor all of Sam's hard work, and thank all of you for the part you have played in his recovery. So sit back, relax, and enjoy this short, but (very) sweet video of our boy. Have a wonderful weekend. We love you guys!

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! 

6/28 - Sam's Journey - Day 199

Just a quick note that has not very much to do with Sam. We're enjoying our visits with everyone that's coming through, and I'll say more about them in future posts. Tonight, I wanted to share with you that I've been in touch with the mother of the boy who was hit by a car in early June. Knowing that you all are prayer warriors par excellence, I have included him in the last few blog entries without much detail. He is making incredible strides, and he has an incredibly supportive family moving through this with him. I got the link to the blog updating his progress, and I'm giving it to you to, so you can get to know Ben and his family. The link is:


https://my.lotsahelpinghands.com/community/the-schafer-family/home

And that's it for tonight! Thanks for being awesome, #TeamSam!