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.

4/29 - Sam's Journey - Day 139

It's been a decent week at Casa Loeffler, despite the feeding tube drama of last week and this week. Sam passed his swallow test, clearing the path for eventual feeding tube removal. On Monday morning, he had an appointment with the gastroenterologists, and they were impressed with how much progress he is making. Apparently, the last time we were in, he still had the trach and that seems like forever ago to us. It's sometimes easy to get so wrapped up in waiting to see him make progress that we forget how very far he has come. A few days ago, I was silently lamenting the fact that we haven't heard him 'sing' yet, and then I realized that he's only been speaking for about a month. Every day his speech gets clearer, he forms longer sentences, and does not need to breathe in between words as much. Except for when he has just woken up. Then it sounds like he's had too much to drink, which is kind of comical. I'm not sure he feels that way, though. The other night, he apologized for being annoying. When we asked him how he thought he was annoying, he said, "I talk too much." If you consider that he was silent for more than 3 months, the concept of him talking too much is laughable. We told him to talk as much as he wanted. (And to not be offended if we don't catch everything he says.) When he was little, he was the slowest to talk and was always a man of few words. We always attributed that to the fact that he could hardly get a word in edgewise with the other "talkers" in the house. Now is his time to make up for that, and we're encouraging him to do that.

Other than continuing his progress at rehab, he had an outing to his sister's softball game last Friday. With his left hand still not cooperating, he has developed some workarounds for clapping. He either claps against his cheek (not my favorite) or claps with someone else's hand. A while ago before he was talking, he had come up with symbols for different people. Sarah's, for whatever reason, was holding up 3 fingers. Sam will say, "Hey, Sarah," then flash her the symbol, and she'll return the gesture. He was holding it up while she was on the field and on deck to hit, which of course she missed. And while it's kind of Hunger Games-esque, it's rather endearing that they have their own special greeting. 

Monday night we headed to Clark together for the first time since the accident. We told Sam that we were going to cheer for Sarah winning an award, which we were. What he didn't know was that he would be receiving the principal's award. What Sarah didn't know was that she would be receiving it, too. It was a fantastic night. They were both very surprised, and we were all very touched with everything that was said about and done for us. Everyone at the school has been beyond supportive, and the evening just felt like a big celebration/homecoming. 

I wish I could say that that's where the evening ended, but as we were getting Sam to bed that night, his feeding tube completely came out. So, off to the ER we went and were back home again with a new tube by 2am. All is well now, and when we reminisce about 4/25/16, we'll just remember the first part of the evening.

As Sam moves forward, our mantra continues to be "slow and steady wins the race". We are in the middle of the marathon now, and we are just going to let him run it. Knowing him, he'll run right past the finish line and go another 12 or 13 miles before he takes a break. 

This post's pictures are courtesy of all of the #TeamSam T-shirt photos I've been getting. Enjoy your weekend!

         

4/19 - Sam's Journey - Day 129

A very brief update for you...

He passed the test!!! Mushy food, here we come! His first requests are for strawberry frozen yogurt and soup. (I'm guessing not together.) It is entirely appropriate that one year ago today, he met John Rutter. have a great night!

4/17 - Sam's Journey - Day 127

It's been a very busy week for all of us, although I'd be hard-pressed to think of one that hasn't been since December 12th. The normal stuff of life keeps rearing its ugly head, and it showed up in force this week. Sarah had what we think was food poisoning. She's starting to feel better, but it's been a rough few days for her. Jim is super busy with extra music festivals and performances for a few weeks. Things should calm down shortly, but it's just one of those special times of year that he's running around so much that sometimes he sees his own butt running around the next corner. His head cold isn't helping much either. 

I am busy with school and wrapping up the next to last grading period. I'm also dealing with the ever so exciting medical bills, insurance issues, and recently, problems with some of his feeding supplies. Part of his feeding tube completely came apart yesterday afternoon, and we ended up at Children's in Plano to try to find a solution. (Thank you, Carrie, for getting us there and back, and sitting through an interminably long--yet often humorous--trip!) That visit could have been avoided if we had been sent the appropriate supplies in the first place. Although we still don't have the right "parts", we have a manageable compromise, so Sam can still eat and get his meds. 

There are only 33 days left of the school year, and that is a relief. As that part of the year closes, I freely admit that this is not my finest teaching year. Before you start scolding me because I had the mother of all reasons for that to happen, let me explain. I do not feel guilty about it. I just feel bad. I love my job, and I pride myself in doing it well. I know that my students did not get the very best of me this year, and they deserve better. For that I feel bad. It's interesting that throughout all of this, we've experienced every emotion possible. For me, it's as if each one is in its own separate little box, and they open and close at will. It's odd to be able to differentiate between feeling bad and feeling guilt, because prior to this, I wouldn't have thought there was much of a difference. There have been so many new learning curves since the accident, and the emotional realm has not been exempt from that. 

Now on to the the Sam stuff! He has been busy as well with all of his therapies and some medical evaluations. You will be happy to hear that there continues to be good news in his progress. He is such a hard worker, and is moving forward in a lot of areas. He continues to have small bits of mushy food, and the big news about that is that he actually fed himself this week. In OT, he's working on un/dressing himself, and he's still doing "walking" practice in PT. This week he has a swallow test scheduled which will determine how we will move forward with feeding. While he has been improving a lot, we have no idea how this will turn out. Prayers for a successful study so that we can work toward the removal of the feeding tube would be appreciated! We're also weaning, and/or getting rid of several medications. This makes life easier for us, and less chemical-based for Sam. Both of those are good.

Our wonderful next-door neighbor came and gave Sam a desperately-needed haircut. Not many things breed hairdos as strange as those after multiple brain surgeries, and he looks so much better now! He also had a good visit with two of his humanities teachers. He was so excited about them coming to see him. He's still a part of the humanities chat groups and had already asked me to download the book they are reading right now. A few weeks ago, he asked me to get him a notebook so he could take humanities notes. Only this child would make such requests. 

One other note for the school community...Sarah was nominated for a student achievement award, and Sam will be attending the ceremony on the 25th in a show of sibling solidarity. So, friends and teachers of Sam, if you are there, I know you'll be excited to see him. He's anxious to see you all, too. At the same time, we don't want him to get too overwhelmed. Please do come say hi to him, but if it looks like he's had too much, I might give you the 'not now' sign. Please don't take it personally.

When I find myself in a new, life-altering situations, my tendency is to read about them. I seek out resources, particularly first-hand stories of people who have found themselves in the same position. I did this with the surprise (ambush?) of a twin pregnancy, and I'm doing it now. I do not look at a lot of medical advice this time, because there are just too many variables with brain injuries to make it worthwhile. People can also lose their minds when they rely on WebMD as their primary healthcare resource, thinking they have a terminal disease when it's probably just gas. I just don't have that much mind left to lose. I have recently read two different books of personal accounts of brain injury. There are ample similarities and gaping differences between their stories and Sam's. In reading them, I find myself torn between being bitterly jealous and consummately grateful. I'm envious of the advances those survivors have made that Sam has not. More often that not though, I find myself in a position of gratitude for the things that Sam has recovered that those in the books have not. One of the reasons for that is Sam's demeanor. He is certainly not exactly like pre-accident Sam. (We sometimes call him Sam 2.0) He is much more verbal with his emotions, and frequently tells us he loves us, and thanks us (unprompted) for doing things for him, and that rarely happened before.

I have read on several occasions about how TBIs breed aggressive bursts of anger or violence. In Sam's case, this has not happened at all. Ever. If anything, he is sweeter, kinder, and more appreciative than he was before. There's been a lot of talk in the media and locally after a TBI survivor acted on that aggression with tragic results. My heart hurts for the family and friends of the victims, but I also find myself troubled by some of the assumptions being made. Yes, it is true that brain injury causes aggression and violence in many survivors. However, since brains are so bizarre, this does not happen to everyone. Assuming that this will happen to Sam because he, too, is a TBI survivor, while understandable, is also faulty. No two brain injury survivors are exactly alike. It's like they're each some kind of broken, oddly-shaped snowflake swirling around in their own personal storm, trying to find their way to solid ground to join the rest of us oddball snowflakes. Some make it. Some do not. All I know is that every story is different, and right now, Sam's doing the majority of the writing. So, friends, until he writes the last page of his book, I'm just going to sit back and see what he comes up with. 

I only have one more thing to add before closing. If you ordered a #TeamSam shirt, they are on the way! Thanks so much, Sue, for all of your hard work on this!

Have a great week, everyone, and thanks for your prayers for continued progress and a successful swallow study!

Still happy to be home!

**Addendum: When you get your #TeamSam shirts, I'd love to have you send me pics of you in them, both for posterity, and for posting in the blog! (with your permission, of course!)

4/10 - Sam's Journey - Day 120

Why, yes. It has been a while since I've written. The last two weeks having Sam home have been wonderful. And, at the same time, it's been incredibly exhausting for us. Jim and I have switched to the role of primary caregiver while he is at home. It took us a little while, but we have a pretty good system set up. It is very difficult though, when you consider all the other things we have to do in the day. Like work. And sleep. A big thank you to everyone who has made the "eat" part so easy! Thanks, also, for waiting patiently for the latest blog entry. And if you're not being patient and just not telling me, thanks for that, too. For as frustrating as some things have been, and for as depleted as we can sometimes feel, we're trying to keep perspective. I found out this week that two different stories of young people close to Sam's age who also suffered brain injuries were not doing well. In one case, the fight is already over. There are plenty of things about what happened to Sam that are excruciatingly difficult, incredibly unfair, and that just downright suck. But we still have Sam with us. Throughout all of this, it wasn't always a given that he would be. We will gladly suffer through the really challenging times, because we know we are some of the lucky ones.

When Sam came home, he had a couple of days before he officially started at the new rehab facility, and even managed to have a follow-up visit with his neurosurgeon. Everything seems to be going according to plan there, so he doesn't have to see him again for another 6 months. We also got to go out and tour the new place, and meet with the people who will be working with him. It's in Anna, way off the beaten path. The facility is on a ranch, and it's both beautiful and quiet. The quiet part is much appreciated after the unrelenting cacophony whose name is Dallas. The van comes to get him at 8 in the morning, and brings him back around 4:30 each weekday. That is a beautiful thing, because it lets Jim and me take care of what we need to here involving mundane life stuff. One of the harder things to get accustomed to has been not being as plugged in about what he's doing each day, and building relationships with his therapists. There has been one care conference already, and we journal back and forth with his speech therapist. We always get a report from Sam on Speech anyway, because that's been the favorite part of his day.  

The least amount of information we have is from OT and PT, so here's what I've got...OT is working on how he can get more of his independence back in basic life tasks like getting dressed, combing his hair, etc. In PT, he's doing a lot of "walking," and it's getting easier to get him to standing and moved to a different spot because he's doing more of the work. (For which my back is eternally thankful.) 

Like I said, Speech is Sam's favorite, mostly because it's where he works on what's most important to him: talking, singing, and eating. He is speaking more and more, and the speech is increasingly easy to understand. His tongue is moving better each day as well. No singing yet, but it will come. The therapist has had him do some humming practice, too. Prior to the accident, Sam would hum incessantly. It was pretty irritating, truth be told. And I had to stop sitting between Sam & Jim, because inevitably they'd both be humming. It might not have been so bad if they'd consulted with each other and hummed the same thing. Clearly, it's a genetic trait. However, after the last three months of relative silence, I am ready to welcome back that habit with open arms. Sam's other favorite part of Speech is eating. He is nowhere near getting rid of the feeding tube yet, but they have been working on trying small amounts of foods that don't require much chewing if any. So far, he has had some applesauce, mashed potatoes, and peach and strawberry yogurt. He was over the moon about the strawberry yogurt. I can only imagine how intensely unhappy I would be, knowing what fabulous food is available to everyone but me.

There's not much other big news to share in terms of his progress. He continues to move forward consistently every day. At the care conference, they gave us a discharge date of November something. That's really good news. They are seeing how hard he is working, and want to keep going with him. There really is nothing limiting how far he can go, although we are finding some interesting things he seems to be missing. We showed him the choir T-shirt from this year, and he said he didn't remember it. At some point, we had been told that sometimes, memories from within 6 months of the injury could be a little spotty. That might be the case with the shirt. Sometimes he doesn't remember things, but then later on he "finds" them. We'll just keep moving on, and trying to find ways to help get back the really important ones. The other thing that we have found out within the last couple of days is that he seems to have lost his sense of smell. To me, it's more intriguing than worrisome. We knew there would be some deficiencies, and frankly, sense of smell is not the worst thing to lose. It's also possible he'll gain it back, too. There are an awful lot of things in this world I would have preferred never to have smelled, so maybe he's the lucky one.

Today, he got to go to church for the first time since before the accident. The primary reason was that he was receiving a gift from the Cover Girls, the quilting group. It is a beautiful quilt, and includes all kind of musical things, including several of his former choir T-shirts. One of the most touching parts of it to me, is that on the back, there is only one panel of a former Tee surrounded by music notes. It is the list of singers from the only All Region concert where all three of the kids are listed. We are grateful for such a lovely gift that was crafted with so much love. Obviously, the outing to church kind of took the wind out of Sam's sails! Thanks, #TeamSam, for your continued good wishes and prayers, and have a fantastic week!