12/25/16 - Sam's Journey - Merry Christmas!

We've had a fantastic Christmas break so far, and we still have a week left! After our trip to San Antonio, Sam finished up his last week at rehab. Here is a video of him as he was leaving: 

Yes, he would have kept going if Dee hadn't stopped him.

We know it is time for him to move on, but it was very bittersweet. We are indebted to everyone who has worked with Sam, and we are sad they won't be a daily part of our lives any more. However, we know we will be in touch since this past week, we went to his original rehab and reconnected with some old friends who helped him get going on this journey. The doctors, nurses and therapists were blown away by how far he has come, and we can't wait for future visits!

It has also been good to actually have a Christmas. While the intermittent power outages have made preparing food interesting, they are nothing compared to what we were going through last year. 

I'm asking again for your prayers, for a smooth transition to school and the new schedule. I'd also like to lift up two very special little girls fighting the good fight of their own TBIs. They were both injured Thanksgiving week in separate car accidents. Please pray for Liberty and JayFay and their amazing families as they go through mirror images of what we did last year. 

We wish all of #TeamSam a very Merry Christmas, and our prayer for you is for health, peace, and happiness in the new year!

In closing, here is our family photo after Christmas Eve services:

12/11 - Sam's Journey - Day 365

It is very hard to fathom that tomorrow (Monday) will mark one year since the accident happened. We're kind of dreading it, and at the same time it gives us an opportunity to celebrate how far Sam has come. Monday also is the beginning of the last week of the semester for Sarah and me, as well as the last week for Sam of outpatient rehab. He's excited. For me, it's bittersweet. He has made insane amounts of progress there, and the therapists have far surpassed what we were hoping for. (And our hopes were high.) The good news is that he is ready to go back to school, and they are ready for him. The plan that was laid out in the meeting left no stone unturned. I am incredibly impressed with the amount of forethought and man hours that were put into this far in advance of him going back. I am confident that he is in the best of hands. We chose to move to Plano because of the school district, and they are taking very good care of our boy. Wildcat Nation, we are grateful for you!

Additionally, the tube did indeed come out on the 28th! Sam is thrilled, we are thrilled, and we move on to the next goal. We have decided that we will use the button covers as tree ornaments this year, because that's just how we roll. Thanks for all of the prayers and encouraging comments that day!

Finally, we are back from our trip, and it was excellent. It was good to be together with relatively little stress. We purposefully did not pack our schedule, although Friday was rather tiring. The concert was incredible. Billy Joel is without a doubt, the consummate entertainer. Jim was saying that he was so tired at the end of the concert. Then he remembered that Billy had been performing all night (including a 4-5 song encore) at the age of 67, so he decided that he wouldn't complain too much. He (Billy) missed very few of our favorites, and it was an amazing show. Here are some pics of our weekend:

Boy bonding at a pit stop







Lunch at Mi Tierra

 Riverwalk-ing

And, concert time!

Finally, quite a while ago in this journey, I'd posted a video of Sam singing She's Always a Woman. We were thrilled when it was a part of the concert. Here is most of the song. Peace, #TeamSam, and thanks for walking this year with us!

11/26 - Sam's Journey - Day 349

We had a very good Thanksgiving with lots of thankful moments.  Here are a some photos from our time together.

    

We had an excellent day together.

There hasn't been too much else going on, but the next 2 weeks will be full of good things. Tomorrow, we get to say goodbye to this awful thing:

Sam is pretty excited. He'll be wearing his favorite button cover, the one with moustaches and top hats on it. We will all be glad to see it go.

On Friday, we're having a meeting about the transition to Plano Senior. The following week is Christmas 2015 in San Antonio. We're still making decisions about lodging, but we'll settle in on that soon.  

After this week of Thanksgiving, I would be remiss if I did not thank all of you. Your ongoing prayers and support are such a gift to us, and we appreciate all you have done. 

11/13 - Sam's Journey - Day 336

Not much to report here. The 11 month mark passed by quietly yesterday with no fanfare. In fairness, most of our Saturdays are like that. Sam's just moving along as he always has. A couple of things of note:

• This morning, we woke up late. When I walked through to the other room, there he was in the doorway, sitting in his wheelchair. He'd gotten himself up, found his glasses and propelled out to the kitchen. "I lost my call button," was the reason. So, yay, independence, and pass the heart medication for Mom, please.
• He's been making the rounds at banks again on the hunt for quarters. It's a Dad/Sam 'thang'. When they go into the bank, it's like when Norm walked into the bar at Cheers. Everyone knows Sam.
• We're still on track to get the tube out on 11/28. Yay! Water intake seems to be getting a little easier.
• Now that we're at the end of our official school work for 2 classes, he's become a procrastinator. He'll get it done, but not without a lot of nagging. 
• Finally, some of you heard about our plumbing woes. Naturally, this all occurred in Sam's new bathroom. It was...unpleasant. (Ankle-deep in ghosts of dinner past is not something I'd wish for any of you, dear readers.) Jim dealt with the majority of it, but it turns out there were/are some significant issues. We have a workable solution, and while it's irritating that the bathroom is not completely working for him, he has a shower, and there are other options for other business. Thanks for all the offers of support and the incredible kindness of one amazing person in particular, (you know who you are!) for getting things going in the right direction!

Other than that, we continue on. Prayer concerns are:

• continued healing for Sam, Aaron, Corey, Ben, Kyle, and all others fighting through their own TBI journeys.
• for Parker Cusey, a football player from Wylie HS. He was injured in a football game, and that injury caused him to have a stroke. He and his family are at the beginning of the journey, although he is making some very good steps in recovery.
• for all of those who are experiencing stress, anxiety or depression, whether they be young people or adults, that there is always a safe place for them to turn. 

This has been a stressful time for a lot of people for a lot of different reasons. Love one another, and take care of each other.

Finally, a picture. It's one you may have seen Jim post on Facebook yesterday. I don't know why, but I went all the way back to the beginning of the blog, despite having about 1.3 million other things I should have been doing. In any case, I was reminded of how incredible this entire trip has been, and that it's nowhere near over. This picture brought a smile to my face, and I hope it does for you as well. Jim's status update with it was, "11 months today...strolling through Hobby Lobby, looking for coin wrappers of course." Peace!

 

10/30 - Sam's Journey - Day 323

We've had another couple of normal weeks at Casa Loeffler. Essentially, this means we're all neck deep in our routines. Sam heads off to rehab every day, Sarah and I go (limp?) off to school, and Jim runs around like a chicken with its head cut off with all of the musical gigs he juggles this time of year. For as crazy as our "normal" gets, it's still preferable to the alternative existence of the last 10+ months. 

Since I'm hoping to keep this brief, (I'll let you recover from your laughing fit...) here are a couple of developments in the continuing saga of Sam.  

First piece of good news: the Keppra is done! There don't appear to be any weird side effects, other than an occasional shiver here and there. We are currently down to ONE medication only--the Baclofen to keep the left arm loose. Well, that and Zyrtec, the number one drug of choice by the locals to fight Texas-sized allergies. 

Second piece of good news: the No Feeding Tube Use Plan has been in full effect for about a month now, and other than having to keep nagging about the water intake, things are good. Thanks for all of the help and suggestions with the applesauce! I got in touch with the gastroenterologist's office and asked when they would like me to set up an appointment since we were several weeks in with no tube. We now have an appointment set up to remove the tube--barring any complications--not for February like originally planned, but for NOVEMBER 28TH! We're just hoping we can find the magic bullet to keep the water intake up to speed.

Other than that, he's been practicing his walking so much at rehab that he keeps breaking the brackets on his leg brace. It stands to reason since it's the original brace he got shortly after leaving inpatient rehab. He's using the stuffing out of that thing, and we're pretty sure he's grown roughly a million inches since the accident, so we're not surprised in the least. This week he was molded for a new brace, and that should be ready in a couple of weeks. In the meantime, he just has to make due with the old one. Luckily, we have a pretty common phrase we use around here: Daddy fix. For the old brace, Jim has now graduated from zip ties and duct tape and moved straight to the wire. We're just hoping it holds until the new one comes in. I'm kind of glad that I got him that cold plastic welding pen for Christmas last year. He might need it!

Thanks so much for your prayers and support! (We are set on paper towels and water for a good long while!)  Please continue to keep Corey, Ben, Kyle and Tyler in your prayers as they progress through their TBI recoveries, as well as an amazing friend who is recovering after donating a kidney. 

I'll leave you with two pictures from yesterday's All Region concert. In the first one, Sarah is in the first position, front row in the mixed choir. The second is of Jim waiting to accompany for the women's choir. Have a great week! (Or however long it is until I write again!)

10/15 - Sam's Journey - Day 308

Another normal week has come and gone, and normal, as it turns out, is really good.  Despite having passed the nine month magical recovery time, Sam continues to tick things off of his "to recover" list. As we hit the 10 month mark and moved into the 300's in days, we realize how very fortunate we have been in so many ways. We are thankful for that, and for all of you for following all of the twists and turns in the path we've been on. Thanks to everyone who sent or brought paper towels and water, and for those who hopped on the meal train! We are grateful!

In the last post, we had a couple of meetings coming up. The first was the visit to the gastroenterologist. We wanted to get his thoughts on getting the tube out permanently. In addition to replacing his current tube, the shelf life of which is significantly shorter than a Twinkie, he said we could start giving everything by mouth for hopefully 2 months straight. Barring significant weight loss, the tube could be out by February. That's great news! We have been completely tube free for a full week now, and it's going pretty well. We have to get going much earlier in the morning. By we, I mean me, since I'm the food person around here, and if you know me at all, you know I loathe mornings. We've been working so hard to keep Sam alive this year that we don't want to lose all of that hard work by having Jim step into the capacity of chef. We've even managed to figure out how to get him his meds orally. The trick is applesauce. Sam's preference is strawberry applesauce, but since they only make those in individual cups, we're probably going to make the switch to plain old apple-flavored soon. For not being able to taste anything since he's been eating, he's pretty insistent on strawberry flavored everything--yogurt, oatmeal, ice cream, you name it. If they make it in strawberry, he wants it. He's always been that way, though. Given the choice between that or chocolate, he always goes for strawberry. This is a huge aberration in the family, and for a while we thought they might have switched babies on us when he was born. We've settled in on it being a super recessive gene. While we're on the subject of flavors, Sam seems to think that his taste is coming back a little. So far he's been able to differentiate between sweet and salty, and has been able to taste garlic and parmesan. That's good since I can't imagine how hard it is to eat enough when everything you get is mush and it has zero flavor. 

Our other big meeting was about potential school decisions. In addition to reviewing the massive report of all the testing they did--about 50 pages or so--we discussed what he needs extra help with, and where he's headed academically. He's been doing really well with the homebound classes he's taking. In fact, if by the end of this semester he's able to pass English 2, and all signs point to that happening, he will be able to start at Plano Senior in January! Not only that, with a little of creative schedule planning and a lot of hard work on his part, he has every chance to graduate on time. ON TIME. Taking into account the events of the last year, that is nearly unfathomable. But, such has been his entire recovery, so I shouldn't be surprised. He is positively elated about this, and when I told him, he was literally bouncing up and down in his chair he was so excited. For a kid that rarely emotes, it was a welcome sight. He still has a ton of work ahead of him, but there is no question that he will get it done! 

Other than that, it's just the normal craziness around here. Teaching is always busy, and Jim's operating at full-throttle with his regular job, along with the extra accompanying gigs he's doing. Sarah is doing well in school, although her combo AP class is kicking her butt a little bit. During all of this, she has made it into the All-Region choir and has been practicing for the next step on the road to state. We're pretty proud of how she is handling everything, including all of the vexing stuff in the life of a junior. We're also starting to look ahead to the big trip to San Antonio in December. Since my best mode of planning could be qualified as "think about everything that could possibly go wrong and obsess about it", I'm considering our concert seat location (will there be too many steps?) how do we eat (do I drag the Nutribullet with us if we eat out?) and where the heck are we staying? A very good friend has offered her home to stay in, but the five of us can be quite cumbersome, and I'm not sure how to manage the Sam sleeping situation. I'm sure we'll figure it all out, but if anyone has any fabulous ideas, please feel free to share!

The other thing that happened was that I have been in contact with a family whose son was in a four wheeler accident and suffered a brain injury a few weeks ago. They were taken to Medical Center of Plano as Sam was initially, and I went to visit with them there. Not having been there since Christmas day, I was a little nervous about going back. We didn't exactly leave under ideal circumstances, and this was where this all began for us. It was the darkest part of the journey for us, and the one with the most uncertainty. I'm going to go ahead and say it's probably in my top three of least favorite places. Ever. Other than the smell of the place immediately transporting me back to last December, it was actually ok. I also got back to the floor Sam was on and left a note for the nurses, since the last time they saw him it was very bleak. I am so glad I got to meet this family, and I am hopeful that their son Corey can get the great rehab that Sam has been able to receive.

In addition to lifting Sam's continued recovery up in prayer, I'd appreciate it if you could also keep in mind:

• Corey and his whole family, who are currently all at home, but in need of a great facility for continued recovery, and peace as they go through the challenges they now face together.
• Ben, the boy who had the bike accident early in the summer, and his family. He has had a bit of a setback in his own recovery. 
• A very good friend and her family at the unexpected death of her mother-in-law, for peace as they mourn her loss.
• And finally, for my former student, whose laugh and genuine cheerfulness brought joy into my classroom every day she was there, and who was unexpectedly taken from us. Also, for her family, friends, classmates and school community who are reeling from this, that we can all carry with us that light that she had as a constant reminder of what a spectacular human being she was. 

I'll close with a couple of pictures. One is our latest installment of "What's on the Pizza Box?" We love our friend at Papa John's!

And last, but not least, I always bash Sam for his hatred of selfies, but low and behold, guess what he has on his phone! It's not bad for a selfie novice, but I feel compelled to tell you that he does indeed still have a mouth and opens his eyes on a regular basis. Peace, friends!

10/1 - Sam's Journey - Day 294

It's been a pretty decent week here at Casa Loeffler. We've had a pretty decent routine, and there were no major interruptions to Sam's schedule. We've had several of pieces of good news. On Thursday, I got a call from the neurologist regarding his thoughts on Sam coming off the Keppra. He was able to get the original EEG from Plano, and said there was zero seizure activity. That's kind of what we'd suspected, but now that it's officially official, that's some very excellent news! Because of this, it also means two other good things happened. One is that we got to cancel the 'just in case we couldn't get the Plano EEG' appointment next week, so his schedule will be a little less disrupted. Additionally, we are now in the process of weaning the Keppra, and we're incredibly optimistic that it will be successful. 

The other good news was what arose out of his care conference at rehab yesterday. He continues to work toward and meet the goals the therapists set for him, and he continues to move toward more independence. He is requesting to use his left leg more, and they're working to not only develop using it, but gaining confidence in it as well. We continue to see his mobility improve at home. He's working on walking short distances without the cane also. At home, he is moving from the wheelchair to the sofa without any assistance. The first time I saw it was kind of funny. Previously, he had stood up on his own from the chair and then grabbed someone's hand to walk to the couch. This time, though, he stood up, and I held out my hand for him to use as support. He looked at me square in the eye and said, "Put that hand away." Now I need you to watch this clip from Air Force One and then go back and re-read what same said in the same way:

The hardest part was to not laugh out loud, because he needed to concentrate on the task at hand. Laughter has become a bit of an issue, especially at dinnertime. The rule is to make sure Sam's mouth is devoid of food before saying anything remotely funny, unless you want to wear it. That is a problem we will happily weather considering all that has gone on in the last 9 1/2 months!

The other news is that pending insurance approval, his discharge date from rehab is now December 16th. It didn't make any sense to us to start school and then stop shortly after for Winter break. We're hopeful that the approval goes through, considering the latest fun and games we've seen. I ranted enough in a recent post about that, so I won't go into all the sordid details. I will only advise you to ALWAYS check with your provider before going to an appointment to make sure they're in your network, even if they were when you've used them before. Because they could potentially leave the network within a 4 month period, and you know, not cover a routine (exorbitant) medical test. One that's required within 24 hours for an appointment by another doctor, who despite being in the same provider network is accepting your insurance. Because #idiocy. (So much for not ranting.) 

Sam has a couple of things coming up this week. He will be seeing the gastroenterologist this week for a checkup. His water intake has been steadily improving, but before the feeding tube comes out, he has to have everything--food, water, meds--administered by mouth for two months solid. We're getting closer to that, but he does have a bit of work to do before we can start the countdown. The medicine is going to be the rough part considering his swallowing issues. Those seem to be improving as well, and so we'll keep you updated on that.  

Also this week, we have another school meeting to make a plan for his return. Sam's goal is still to graduate on time, and we will see how that might work. It's going to take a lot of time and planning, but as of right now, it's still possible even if it's going to be tricky. I'm both anxious and excited about him finishing full time rehab and going back to school. It's time for him to regain more of his normal, pre-accident life. At the same time, he still needs some pretty intensive rehab, and we don't want to lose that momentum in his recovery. I also know that every time we have a major transition, it's absolutely exhausting for all of us. For that, I'm definitely not excited. However, it's still positive movement forward, and that part is exciting.

One other thing of note is that I've hit the realization that with the school year in full swing, there is a little too much for us to handle here on the home front. In truth the reality of life as we know it is what's done the hitting, but let's not split hairs here. Over the last few weeks, we've had a few #TeamSam angels offer to bring us dinner, and those days have been infinitely easier for us. So, I'm restarting the Meal Train. Here is the link to help out if you're so inclined! 

Loeffler Meal Train


Also, we are going through paper towels and small water bottles at breakneck pace, so we'd be very appreciative of any donations of those things. Thanks for always having our backs--and our stomachs, too!

That is all for now. Thank you for following along and continuing to stand by us on this journey! 

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!