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!

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!

6/5 - Sam's Journey - Day 176

The big news of the week? Sarah and I survived the school year. That is no small feat considering the year we have had. We are all excited to see summer vacation arrive. Even though we get a bit of a break, Sam will continue with rehab during the week all summer long. 

Sam's had a good week. He has pool therapy twice a week, and his food intake continues to improve. He and Jim even made a trip to a frozen yogurt place. Other than the annoying teenagers irritating them both, they had a good time. We're still working on getting his water intake up so that we can get that feeding tube out. It's kind of funny to watch him drink. It's kind of like the scene from Napoleon Dynamite when he drinks Gatorade.

There have been no major feeding tube issues since the last one came out (knock on wood) but it can be an annoyance. Lately it's been irritated and uppity, and the sooner we can get rid of that thing, the better. His walking is getting there, and we're hoping to see him using the wheelchair less in the near future. Things are good, and we keep rolling.

Sorry to be so short, but no news is good news. We just keep going and going and...

Click here for: What we do...

We ask your continued prayers for Sam, and for those mentioned in previous posts. Thanks so much, #TeamSam!

5/29 - Sam's Journey - Day 169

The end of the school year is always a beating, and this year has been no exception. Classes are officially finished, leaving only final exams and grading. And crowd control. I think we will all be happy at the arrival of summer so we have some time to refresh and regroup. It is shaping up to be a little busy, but certainly not as insanely so as the school year. 

For our family, the last few weeks have been filled with some very high highs and some discouraging lows. But we continue to move on through whatever is placed before us and try to hang on to the good stuff and let go of the not so good. We have had a couple of adventures out, both involving the choir. Last weekend, we all (except for Aaron who is working pretty much nonstop) went to the choir banquet. We got there a little after it had started, and when we walked in, Sam got a standing ovation. I think he had a really good time with his friends, and we all had fun. 

This was followed up this past Thursday with the final choir concert of the year. The song dedicated to Sam was so beautiful, and it was an amazing way to end all of these years of being a part of Clark choir. Here is the video:

As for Sam progress, he continues moving forward. It's getting harder to see the progress since we're with him every day, but there are definite improvements. He finally got pool time at PATE. It's pretty incredible. There's a treadmill with video in the pool. Sam said he really enjoyed it. Here's a picture from their website:

Other than that, there's nothing super-new or exciting. There's just more hard work and continued baby steps forward in recovery. He's still eating pureed foods which can be an adventure. Sarah cannot stand being in the kitchen while I'm prepping stuff (overactive gag reflex,) and at times, I can't really fault her. Very few things I've put in the Nutribullet were ever intended to be pureed. My apologies for desecration of food to the following: JS Chen, Einstein Bagels, Angelo and Vito's, Big Tony's, and Salsa Tex Mex, among others I'm forgetting. I offer no apologies to McDonald's since it's disgusting in original or pureed form.

One more note...today is the final day for the last round of #TeamSam attire. If you want a shirt, time's a tickin'! Here's the link:

#TeamSam Shirts

Please continue to pray for Sam's recovery and our patience. We know he will continue to improve, but at the same time, it's a constant battle to not want all of those improvements RIGHT NOW. We know he is doing astonishingly well, especially considering that we almost lost him entirely. It's easy to lose focus in the middle of the marathon, though.

There's a lot of people in our lives who are in need of some prayers right now. Without too many specifics out of respect for their privacy, they are:

• for peace for the family of the friend who had setbacks after surgery. They proved to be too much, and she was taken from us way too early. She was a constant source of happiness, support and love, and her absence is being felt very strongly by many people.
• for strength for the family of a boy who was hit by a car while riding his bike, and for those affected by this. (Before this Sam adventure started, I never truly understood what "My heart sank" really meant. Now, I've experienced it personally several times. Hearing this latest news was one of those times.) From what I have heard lately, he is making improvement, and is in the best hands possible. 
• for a friend who pretty recently received a brutal diagnosis, and for his family who is dealing with everything that comes with it. We love you guys!

And finally, 

• for all the teachers and students out there as they finish up the school year. It has been a very difficult year for so many of them/us, and this adds additional layers of stress. 

As always, thank you for your unwavering love, support and prayers! Peace to you as well!

Here are a couple of pictures to finish out this entry. The first one has nothing to do with Sam, but I wanted to give a shout out to these ladies from choir booster club. It's been an honor working with you, and I love you guys!

Finally, this #TeamSam shirt moment is brought to you via an amazing former student who is kicking butt and taking names on the diving team at the University of Iowa. With the picture, she posted this:

To one of the strongest and most talented guys that I know! Sam, I'm thinking of you and your family all the way from Iowa!🙏🏻💪🏻🎼 We are #TEAMSAM#SAMSTRONG — with Ann Bougher Loeffler at CRWC.