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.

5/14 - Sam's Journey - Day 154

Good morning, fine people!  I wanted to let you know that the #TeamSam shirt store is back open for a limited time. If you or someone you know is interested, please share this link with them:

#TeamSam Shirts

Here's what they look like:

Front of T-shirt

Back of T-shirt

Long sleeved

The shirts are available in short and long sleeves, and youth and adult sizes. They start at $18.50 which includes the shirt (no kidding) shipping and a $9 donation to Sam's medical fund which we're using with increasing frequency. The deadline to order is May 29th, and we will not be doing another run.

Oh my gosh! In my hurry to get this out to you guys I neglected to mention that my phenomenal friend will be heading this up. Thanks so much, Sue, for doing this!

Like last time, please do not feel compelled to order one. Lots of people were asking where we got them, so SPREAD THE WORD! As always, thank you for keeping Sam and all of us in your prayers!

5/11 - Sam's Journey - Day 151

It's been 11 days since our last post, and I really don't have anything super-exciting to report. We're into a pretty decent routine now, and our lives are almost (I'm a little afraid to type it so I don't jinx it) uninteresting. That's ok with us, though. We've had enough "interesting" to hold us for a good long while. Most weekdays, the van picks him up and drops him off, and we all go about our business. Secret confession: boring is kind of nice after the last several months.

I went to Sam's care conference on Monday, and everyone there is very happy with his progress. In PT he's working on walking with a four pronged cane. He needs two people for assistance, but they are hoping that soon he will only need one. He's also working on transfers, and he only needs minimal assistance with that. The goal is to need zero assistance. In OT, he's still working on getting dressed and undressed, and his left hand is still giving him some trouble. They're working on different ways to keep pain to a minimum, and to keep it flexible. It is not moving very much yet. The left leg, however, has been showing signs of waking up. His "walking" has been getting easier, and the left side is starting to engage a little bit. When he's sleeping, that thing moves all over the place. It's coming back bit by bit, and we're really encouraged by what we're seeing. In Speech, he is doing better all the time. His speech is noticeably clearer, (his tongue is starting to move!) and he is eating more and more. He might be able to cut out his feeding tube feed while he's at rehab since he's eating more there. He does eat at home, but he has a real talking issue. While he is home, he talks all.the.time. It's kind of funny because he was usually the quiet kid out of the three. The problem is that eating for him is a pretty slow and messy venture. Either he's so busy talking that he doesn't eat, or he takes a bite and then decides to talk. Or laugh. Or sneeze. At that point, one or more of the rest of the people at the table will be wearing whatever was in his mouth. Since everything has to be pureed, it can be pretty disgusting. Also, I've pureed some pretty odd things. Strangest on the list include beef lo mein, a little smoky link, and part of a Big Mac. He has also requested Skittles and ribs. I just don't even know where to begin with that, so they will have to wait. I'll let you now how the cheese pizza goes. 

We continue to be impressed with the rehab facility, and that was reinforced throughout the care conference. They repeatedly addressed Sam directly, and made him a part of his own recovery. One of my biggest takeaways from the conference was a time they directly spoke to him. They wanted to remind him of previous conversations they've had with him that his recovery is primarily up to him and how hard he works at it. They also wanted him to remember that he should be incredibly proud of the progress he has made, and that he should compare where he is now with where he was the day of the accident, not where he was prior to the accident. That was a really good reminder for me as well. We all want our boy back, exactly as he was before that Saturday in December. But it is important to be mindful of the impressive ground he has made up since then. When I think about how many times we could have lost him, how he was in a coma for more than two months, how he's only been speaking for a little over one month, it is difficult to be unhappy that he's not 100% better. He's had 2 brain surgeries and even had a portion of that incredible brain removed. REMOVED. I cannot even begin to understand the complexities of the brain, but I can say for certain that Sam is a living, breathing miracle. After the conference, I had a mix of emotions during the drive home. I was a little down because we talked about them making a custom wheelchair for him. (We were kind of hoping he'd be out of that sooner rather than later.) But mostly, I was encouraged. I am anxious--in a good way--to see who this new Sam is. What is his purpose? What amazing things will he do? With this kid, the possibilities are limitless, and that is downright exciting.

One more thing of note. 151 days ago or so when this whole thing started, I wrote about Sam's next door neighbor when he was still hospitalized in Plano. You may remember me asking for prayers for Kyle, and talking about his mom, Donna. She and I are still in touch occasionally, and she wrote to me the other day. Kyle's wife had the baby in March, and they are working on their new normal while he's in inpatient rehab. As it turns out, he's in a fantastic rehab--the same one Sam is in. I'll let that sink in a second.

Crazy, right? We haven't been able to meet face to face yet, but we hope to soon. It is just amazing how our lives keep intersecting. I still cannot get my head around how such deep tragedy can bring complete strangers together, even as they move out of that darkness and on into a much more positive direction.

Thank you so much for continuing on with us. This continues to be a marathon rather than a sprint, and we are constantly uplifted by all of you. We will be doing a second run on #TeamSam shirts for those of you who were asking, so spread the word so no one misses out this time, as it will likely be the last round. I do not have any specific information yet, but I will get that to you as soon as I have it.

Some prayer requests for you:

• That Sam continues to work hard in rehab and improve
• That pain in his left arm is alleviated
• For Kyle and his family, and that he continues to improve as well
• For a friend who is facing some significant setbacks after a surgery
• For all teachers and students as they cross (limp over?) the finish line

Thank you, friends! We are grateful for your love and support!  Here are some more #TeamSam shirt pics for you. (Grandma and fam get top publicity!)

Sorry, Stas. You just keep floating off to the side, you rebel, you.

4/29 - Sam's Journey - Day 139 - Part Deux

Hello, good people. I know I just posted a few hours ago, but I forgot to mention a couple of needs that we have, and one question. Any help would be appreciated. Here goes:

• If you'd be willing to trim the tree in our front yard before we get a letter sort of resembling a Howler (Harry Potter reference) from the city, we'd appreciate it. We're also not sure where Jim's tree trimmer went, so tools would also be necessary. 
• I hesitate to mention the following, because I'm afraid we'll have an outpouring of these items, but I'm going to ask anyway. We are going through an awful lot of paper towels and sandwich-sized baggies. If it starts looking like an episode of Hoarders, Paper Products Episode around here, I'll let you know!
• We are also going through a lot of the small sized water bottles for Sam's meds that are mixed and all of the flushes after he "eats". Again, if we have an excess, I'll let you know.
• Eventually, we are going to need some help getting Sam's room ready. Right now, he's temporarily set up in the living room, and we're excited to get him into his own space. We'll be looking for help with cleaning and (minor) furniture moving, and we'll let you know when that will happen. I don't have a date yet, but it should be soon!

Finally, several after seeing the #TeamSam shirts, several people asked where they came from, or said they missed the deadline. We would consider a second run, but we need a certain number to do it. If you are interested in getting a shirt, leave me a comment below with how many you'd like. (Shirts were $18ish, and a little bit more for long sleeved.) I'll tell you if we get the number needed!

As always, #TeamSam, you are a blessing to us. Thanks for all you are doing! Here's a bonus picture for today. I probably should have included it in the last entry since I talked about the awards ceremony. Here is a family picture from that evening.