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!