5/14 - Sam's Journey - Baby steps

I hope you all had some quality family time over the Easter weekend. We had a relaxing long weekend, and despite putting a rut in the road between home and church, it was nice and mellow. Now we're just muddling through the rest of school year. There's really not that much time left--14 days to be exact. I know Sam will make it. As for the rest of us, we'll just have to wait and see. 

In general Sam news, we've had a couple of events of note. The first was his doctor appointment at Children's with Physical Medicine and Rehab. When we got to the hospital, there was a downpour of biblical proportion, and we were absolutely soaked by the time we got in there. We waited for a while, saw a couple of nurses/assistants and waiting even longer. I was starting to get a little irritated when the doctor finally came in. It was definitely worth the wait, and we LOVE Dr. I! She checked a lot of different things, and based on what she saw, she recommended that we do a couple of significant things. One is that he have intensive rehab again. (So much for a lazy summer!) We are working on getting him back into PATE for that (his choice) which meant he had to go back and visit with his former therapists there. Everyone was really happy to see him, and he was pretty happy, too. We're waiting to hear from insurance, and we're hopeful they'll be cooperative. I might have to dust off my angry mommy voice if they are not.

The other recommendation from Dr. I is that he switch out the medication for preventing tone and spasticity. (Basically it keeps his muscles from firing constantly and prevents pain associated with that.) He has been on Baclofen since last April or so, and he takes it in his applesauce cocktail twice a day. (Side note: I swear, once this kid starts eating real food again, he will never touch applesauce or pudding for the rest of his life.) The problem with the Baclofen is that it goes through his whole system, which relaxes everything and actually slows down brain function. <---This is particularly bad for someone recovering from a brain injury. Her recommendation is that he receive Botox shots in his arm and leg to keep the medication localized and target the spots giving him the most problems. If they work, he would need to get another round of shots in 3 months. We would try this for a few rounds to see if it makes any difference. I am really hopeful that this makes a huge difference in his mobility. Once he regains movement and control in those areas, his balance will improve. When that is in place, that gives him a lot more freedom with taking care of just about everything independently. I'm feeling really good about this plan, and I'm optimistic he's going to make some more really big strides like the ones he was making when he was back in therapy full time. Back when we were constantly living in the world of medical decisions, my gut was right pretty much 100% of the time. Here's to hoping that that streak holds!

Otherwise, his sleeping EEG is coming up shortly. Aaron has been home before leaving for his Alaska salmon fishing journey (that's a whole other blog) this summer. Because he does not have school or work the next day, he has been charged with keeping the boy awake most of the night so that there's a shot of him actually sleeping during the EEG. 

School continues to go well for Sam. Sarah and I are in the crazy busy time of the end of the year/get ready for next year stuff, and Jim is neck deep in accompanying schools for their end of the year stuff in addition to church stuff. We're pretty fried, but we always cross the finish line, even if we're dragging each other over it.

Today saw a spontaneous pop up game of frisbee. Sam, Sarah & Aaron were the main participants, but I did play back stop for a while. It took me back to the day Sam went bowling and what a huge step that was for him. It also reminded me that the night before the accident occurred, I had a conversation with our Athletic Director who also happened to be Sam's PE teacher at the time. For those of you who don't remember, pre-accident Sam was not very fond of physical or athletic activity. He did ride his bike everywhere, but most every other sport was deemed outside of his sphere of tolerance. That was, until they came to the Frisbee Golf (Ultimate Frisbee?) unit in PE. Suddenly, he was tearing it up in PE like some kind of frisbee savant, and people wanted him on their team. I am pleased to report that the great majority of his frisbee-related skills are still intact! He does have some trouble seeing the frisbee coming to him at some angles, but even there, we see improvement from where he started in his recovery. Here are some pics from today's frisbee fun fest:

 

 

That's pretty much all I have for now. Stay well, and stay sane if you're hurtling toward the finish line of your own school year!

One final thing. If that was not enough frisbee goodness for you, here are a couple of videos. Enjoy!

4/2/17 - Sam's Journey - More boring, but...

It's been relatively calm here, with a couple of extra events mixed in. School goes on for 3/4 of the Loefflers, and it's hard to believe that we're in the last grading period. That is welcome news for all of us. While this has certainly been a much easier year for us than the previous one, it has still been rather draining. Summer can't come soon enough!

In addition to moving through the normal routines, a couple of things of note have occurred. One was Sam's academic conference to plan out his final year of high school. It was amazingly quick and painless. At the end of the meeting, several things were clear. They are, in no particular order:

1. His classes for next year are chosen. I think his favorite of the bunch is Music Theory. 
2. Sam will not need to go to summer school for anything, which, while very aggravating to his sister who does have to do some summer work, is phenomenal news.
3. Barring something catastrophic, Sam will graduate on time with 1/2 credit more than he needs. (In your face, TBI!)

We're very excited about all of the above, and we're thrilled that the plan we laid out last year is working!

The other event of note is that Sam finally took his English 2 STAAR exam. For those of you who don't know, that is one of five state assessments required for graduation for all students. It is the bane of the existence of just about every student and teacher in Texas. I could explain interminably about why this test is an instrument of evil, but this video pretty much sums up how I, and many other teachers feel about the whole process:

Our goal for Sam is just that he passes. Even if he does not, there are ways to get around it, and he'll still graduate. So whatever happens, it's all good. (In your face, State Assessment!) Prior to the test, he got some assistance from his English 2 teacher at Clark, and he went to some tutorials with a fantastic teacher at Senior. (Whether or not he followed their advice is unclear. Sam is, after all, still Sam, and does his own Sam thing.) At the end of the day, it's over, and he will not have to take the exam again. Here is a photo of a home study session. Chester was ever so helpful.

Other than that, the big excitement was that we had some visitors. Jim's mom and brother were here for a few days, since it had been a while since we had seen them. Aaron was also able to coordinate a visit at the same time. Although school prevented us from spending a lot of time together, the time we did have was wonderful. And, while the rest of us were at school, Jerry and Aaron got the dining room dry walled. (We've been living with open brick face since the termite disaster of a couple of years ago.) We're so glad they were able to visit, and we hope they had a great time, too! Here's a picture from family dinner at BJ's:

In a couple of weeks, Sam has an EEG to see how things are going on in in that brain of his. We have to deprive him of sleep the night before so he sleeps during the test. That should be a delight for all of us. We also need to set up an appointment with a physiology neurologist to get some official rehab going. I guess he'll be having his own little version of summer school! We'll keep you up to date on any developments. Until then, #TeamSam, peace!

3/8/17 - Sam's Journey - Boring is good

Sorry it's been so long since I last wrote. The truth is, it's been pretty boring around here. While I definitely prefer tedium over the excitement(?) we had after the accident, it can be incredibly monotonous. We're on Spring Break this week, but when we're in our normal routine, it's can seem endless and tiring. I'm not so sure things would be easier without all the 'Sam stuff', but it certainly doesn't help. There are days I can't remember if I did gave him his meds, and I did, completely on automatic. Sometimes I walk into the kitchen, and the Nutri-bullet and I stare each other down thinking horrible things about each other. All things considered, though, I'll take this daily grind over the alternatives. 

Since the last entry, and at the risk of jinxing it, Sam has had no seizure activity. The Keppra is doing its job, and we're happy that seems to be settled for now, at least. Sam had a neurology visit last week, and the doctor seemed satisfied with how things leveled out for him now that he's back on the meds. He did order an EEG to see what's going on in that noggin, but he didn't seem to be in a huge panic to get it done. He also wants to give us a referral for a specialist in TBI on the physical side of things. One other thing of note was that Sam is now officially classified as epileptic. When Jim first told me that, I was pretty bummed, but as the doctor explained, it's kind of a good thing. It just puts him on the epilepsy spectrum, and there are even college scholarships for epileptics. I was curious and did a cursory search, and there is some interesting stuff out there for both that and TBI. There's one mini-silver lining to this whole thing, although I'm pretty sure he wouldn't have been hurting for scholarship money had the accident not happened. 

Sam also had an eye doctor appointment, because as I was eventually informed, he hasn't been seeing well for a while. We were filling out a survey for PATE checking on how his transition to 'regular' life was going. I got to the vision question, and Jim said, "Oh yeah. He can't see anything past six inches away from his nose." I don't think it was that bad in reality, but it would be good to know these things if you want to, say, SEE THINGS. As it turns out, his vision hadn't changed all that much, and his new glasses came in today. Because the new frames are basically identical to the old ones, no one will know they're new--except for the cleanliness factor.

Other than that, like I said earlier, it's been pretty boring. Sarah & I are going on a college visit tomorrow, and I get to see a good friend on the trip. (Yay!) I spent several hours on the phone today with insurance companies, so I am truly excited to get away for a couple of days. Hopefully when we get back, I'll have time to get my grading done, get together all of the tax documents, and shovel a path through the house before Jim's mom and brother come out for a visit. I have a feeling I'll be picking my battles on that one.

Prayer requests for this entry:
-please continue to keep JayFay and Liberty in your prayers as they move through their recoveries, especially for Liberty as they need her to wake up a little more to stay in rehab. Also, please pray for their families as well. They are in the middle of the most grueling part of this, and are doing everything they can to help their daughters recover.
-please remember Jim's aunt, Sylvia, as she has recently been placed under hospice care.
-the families and friends of three girls who were involved in a fatal car accident a few weeks ago. One of the girls survived, but has a very long road ahead of her. 

Thanks for waiting so long for a rather uneventful entry! May you all be well!

I realized I don't have a ton of recent photos, since it's been kind of slow, so I just snuck this one of Sam sitting on the couch reading his coin book. He still has a thing for blankets.

1/31/17 - Sam's Journey - Two steps forward blah blah blah

It's been a while since I last wrote. I guess I was saving up for a big event, and today was that day. First, though, the mundane. We've been crazy busy with school for three of us, and solo and ensemble season for Jim. Sam has continued to do very well at school. We keep finding little things that have to be reprogrammed. Rounding numbers is the latest. He sees the number after the decimal point, decides it's inconsequential and largely dismisses its existence. While I'm sure this is a TBI thing, it might also be a genetic math defect passed on from his mother. We may never know.

And now for today. A lot of you have seen some of this on Facebook, so please forgive the duplication. This morning started like any other school day. I got breakfast ready, Sam started eating, and I went to the kitchen to get other things ready for the day. When I came back into the dining room, Sam was slumped over to the right, and it looked like he was reaching for something he'd dropped on the floor. Except he wasn't. He was having a very mild seizure. While it was unnerving, I got him upright and kept him supported until it had run his course. As far as anyone knows, he had never had a seizure before, so as you might imagine, it caused a lot of concern on our part. He had been on anti-seizure meds previously, but we had weaned him off of those (yes, with a neurologist on board) a few months ago. There were no seizures until today. 

So, after we regrouped, Sam finished breakfast, and I put a call in to above-mentioned neurologist to see what our next move was. Sam was fine for a good 3 hours, and then he started complaining about a headache. Right after that, he had another seizure. It was on the mild side again, but still no fun to watch. We were engaged in a great game of phone tag with the neurologist when he really started complaining about the headache and began throwing up. A lot. Poor kid threw up more than he had in a long time. Then he asked for pain meds for the headache, and that was our cue to go to the ER at Children's in Plano. If you know Sam, this kid complains about nothing physical. When he was little, he'd get hurt with great frequency, after which he always said, "I'm ok!" even if he clearly was not. It was very reminiscent of the following: 

Just for you, Tiffany!

In any case, once we got there, they took him back right away, started an IV with fluids and ran blood tests on him. Jim and I waited while Sam puked some more. They gave him something for that, but didn't want to give him pain meds until they saw what was going on in his big ole brain.

Eventually, he had a CT scan, and I got to with him. I even got to wear the fancy lead apron, you know, in case I want to have more kids ever.  

I humored them and wore it anyway. The doctor came in and gave us the results, which were the best they could possibly be. There were no changes they saw compared with the MRI from August. No new brain bleeds, no new vascular issues. Nothing. New. That is good. Additionally, his blood work was on point, and they even said that his kidneys were excellent. One year ago, they most certainly were not that. At that point in our day, they were ready to give him pain meds, but he had finally gotten to sleep, and we wanted to see if he was still having pain. We woke him up and asked him if his head still hurt, and he shook his head no. I asked him if he wanted us to shut up and let him sleep, he nodded. That's our boy, honest to a fault. After a bag or two more of fluids, we were sent home. They originally thought we might be going to Dallas since there's no neurology department at the Plano hospital, but after the powers that be conferred, we were released on our own recognizance, and have been keeping a low profile at home. 

So, despite it being a draining day overall, it went so much better than it could have. A couple of downsides did come out of the day. One was, well, watching my kid have a seizure. After all that he's been through, it's really off-putting to see him take what could be a big step back. Another not great thing is that he is now on Keppra again, and most likely will be for the long term, if not for life. That's a complete bummer, but it's honestly something that is much easier to live with than constant seizure activity. All in all, we'll call the day a pseudo-win and move on from here.

Thanks so much for thinking about us and being in prayer for us. If you could keep the following in prayer as well, I'd appreciate it:

• Tyler's mom and family. He lost his battle shortly after I last posted, and while he is no longer suffering, this is a very difficult time for those he left behind.
• A dear friend and his family as he continues to fight complications of ALS. This is a very difficult time for them as well.

and prayers of thanksgiving for

• Jay Fay as she has moved from Children's to Sam's old stomping grounds at OCH. 
• Liberty, who did very well in reconstructive surgery for her skull, and could be heading to OCH this week. Both of these girls are total rock stars, and I feel great things are coming to them.

One more note before closing: I'm reactivating the Meal Train for the time being. Mondays and Wednesdays are a little more challenging with rehearsal nights for Jim. The link is https://www.mealtrain.com/trains/ngwwve if you're interested in helping out. Thanks to all of you for jumping right back onto the roller coaster with us today. You've still got it, #TeamSam!

I leave you with a picture of Sam in his deluxe suite at Children's today. He looks rather miserable because he was, but I took it to send to Sarah to try to convince her that everything was going to be fine. As it turns out, it was. Peace!

And check out those sideburns!

1/15 - Quick update

Good evening! There's nothing huge going on, but since we're in the middle of a three day weekend, I thought I'd take a minute to write. School is going pretty well, although I'm still not a fan of the homework. 

We're continue to discover things that Sam has lost and needs to recover. One that stands out is using capital letters. He was working on a presentation and his titles had all lower case letters. I pointed it out and asked him if he wanted to change them, and he said "Nah." (I eventually convinced him to change them.) I haven't heard from any teachers about other difficulties, but I'd rather see what he's able to fix independently. All in all, though, so far so good.

Other than that, Sam's big outing consists of going to RYOT, our church's youth group. It's great for him to be able to hang out with friends. Tonight, I was a little concerned for him, because they were going bowling. I didn't want him to be bored watching other people play and eat, or worse yet, get sad or frustrated that he couldn't be a full part of the group. I tried to convince him it might be better to stay home, but he really wanted to go and see his friends. So, off he went. I guess I forgot I was dealing with He-Who-Will-Not-Be-Limited, because not only did he go and have a great time, but the child actually bowled. One year ago, he was just starting to come out of the coma, wasn't walking or talking, and had just started PT, which consisted of getting him to sit in a special chair for an hour or two. And now he's bowling. (He even got a strike.) So, I'm sharing this photo with all of you, and to remind myself that he only has the limits we/I place on him, because he surely doesn't perceive any! I'm thankful for the neurosurgeon who refused to give us any prognosis that would have limited him in our minds, and also that we completely disregarded the people that told us we should give up on any hope of a real recovery. Now if we could just hone these bowling skills, I hear there's some good scholarship money there!

1/9/17 - Sam's Journey - Onward

The first week of school was a success! There were some minor glitches, but overall, it's just good to have him back there again. We have to work on some things, like using his planner, even though Sam feels like his memory can handle it. (He used to have a near photographic memory. Now? Not so much.) I'm not loving the homework, even though it's not really that much. I'm just spoiled that for the previous 12 odd years of his academic career, he essentially did everything independently. I don't think he took a break this week in any classes, even though he is allowed to do that at any point. That is simultaneously great and awful. We're not sure if he's really doing that well, or if he is just powering through because he's, well, Sam. We really don't want any excessive fatigue on his brain which is still healing, and despite all of the progress made, has a considerable way to go. Even though he's still adjusting to his schedule, he manages to keep his humor throughout the day. He was having some brace issues, and so I thought I'd check in with him today. Here is our text conversation:

Message received.

So all things are going well with the big return to school. Thanks for all of the well wishes and support as we move through this transition!

I wasn't going to write tonight, but I have been pretty lost in thought this whole evening. I found out that Tyler, the young man whose accident was a month before Sam's, is not doing well, and is getting ready to move to hospice care. I have been profoundly affected by this news. His mom has been fighting this same fight for her child, and loves him just as fiercely as we love Sam, yet the outcomes are so vastly different. My heart hurts for her and the rest of her family, and it is my hope that they can eventually find some peace in knowing they gave their all to help him recover, and that Tyler felt the constant love they showed him during every minute of their journey. They are all in our prayers, and we hope you will add them to yours as well. 

Sorry to end on such a somber note, but ever since I started this blog, it has been the best place for me to process thoughts I can't manage in my own head. You are a wonderfully patient and forgiving audience, and I thank you for bearing with me when things get heavy. Peace to you, #TeamSam, as you go through your week.

1/3/17 - Sam's Journey - First Day of School

This clip has been referenced multiple times today. Sam had a great first day at school. In the days leading up to the big event, Sam was beside himself with excitement. When I asked him how his day went today, he hadn't backed off too much from that. He even has a quiz tomorrow! Other than singing, school is the main reason this kid got up each morning. It is good to have him back in his natural environment.

Just in case you thought everything went smoothly, I assure you it did not. We started off in a bit of a panic when Sarah woke us up at 7:45 after I'd forgotten to turn on my alarm volume. I'm amazed that everyone got to where they needed to be. On time. Wearing pants. Hopefully tomorrow goes a little smoother. 

Thanks for all of your support to help us get to this huge milestone in this weird and wild trip we've been taking. Here are a couple of pictures from the day. The beam of light was totally unintentional and at the same time is a symbol of what today meant for Sam and all of us.