Sam's Journey - Onward

Wow. It's been a while since I last wrote. Typically around here when school starts, a lot of other things come to a screeching halt. This year has been no different, especially with Sam and Sarah both being Seniors, in choirs at school and church and Dallas, and everything else we try to accomplish in a week. Despite all of the ruckus, the transition into this year has been relatively smooth. We're always busy, but it's (mostly) a normal busy with some minor anomalies thrown in here and there. Somewhere in the middle of all of the stuff, Sam & Sarah turned 18. We officially have no 'kids' anymore. We celebrated by seeing a family favorite movie Galaxy Quest at Alamo Drafthouse, and had a blast. I'm not sure if I ever mentioned this before, but this scene is quite Sam:

Sam finished up rehab part 3 in the middle of August. Throughout his time there, he continued to make progress. His big goal before leaving was being able to go back to school without his cane. After doing a lot of his PT outside, he was ready to go and can be seen during passing periods cruising around campus sans cane. I believe his aide had to talk to him about moving a little too quickly, as she's carrying his 10-15 lb. backpack (not hyperbole) and trying to stay with him. He has a new aide this year. We loved Mr. Ray last year. He was absolutely perfect for what Sam needed at that time. This year we have Ms. Vicki, and she is absolutely perfect for what he needs now. She gives Jim updates, had some great input at Sam's ARD (yearly Special Ed meeting), and has been a great addition to #TeamSam! (More coming about why later.)

Sam has continued to improve as expected - at the slower rate expected as well. We will take any and all forward movement happily. He has had a couple of changes to his treatment plan, most of which have been productive. First, at the recommendation of rehab staff, he started taking Ritalin. Its purpose is to keep him focused, especially when he's partially through the day and tired from everything he's already done. We do have to watch out for weight loss because he's always been on the thin side, and we don't lose the weight he gained back after the coma. (At one point, he was down to 125 lbs. Even for him that was bad.) I have been adding extra calories to his food ever since the feeding tube came out, and all the extra walking he does at school does not help. The weight seems to be holding ok, and the focusing is definitely better. In a perfect world, we could figure out to transfer our extra weight to him. So far, we have not found that magical solution, but that won't stop us from trying!

Sam also had his second round of Botox with the PMR doc. The first round was lackluster at best, so they upped the dosage to the maximum this time. The good news on that is that his arm has been really loose. In fact, one of the mornings I went to get him up, I got to see some thumb wiggling. I couldn't help but think about this scene (at :40) from The Princess Bride:

That is the good news. The bad news is that unless he makes some significant progress, this is the end of the Botox for him, and the only other real option would be surgery. We are not even remotely considering that at this point since that would really mess with the school plan. We're just hoping to see more improvement as it takes effect. 

One other change that is considerable also came out of the PMR visit. They want to try something new to try to increase flexibility/position in his left foot. It is called serial casting. What will happen is that over a period of 6 weeks or so, Sam will get different casts that will force his foot to stay in different positions in an effort to try to get more range of motion, and hopefully muscle memory to get that bad boy moving. We are not looking forward to it in the least. We're looking at 6 weeks of misery, "fun" with walking, itchiness, weird leg positions, and other general insanity. On the upside, we don't have to worry about trying to ram the choir shoes on since they don't fit with the brace. We'll also be able to give the brace a little break. That whole process starts in a week, so we'll keep you posted on how we're all coping.

Other than that, the big fun news is that he has already sung in two concerts already. One was with CCGD (Children's Chorus of Greater Dallas) and the other was with A Capella choir at school. In CCGD the young man Sam is next to has been wonderful with helping him be in the right place and carrying stuff if needed. We're not sure if he was 'enlisted' by the director or not, but it really doesn't matter. There are definitely good people in this world, and they keep showing up throughout this battle. Another one I mentioned earlier is Ms. Vicki. After working with him all day, she was there at the concert, helping him safely get up and down the steps twice. Additionally, there were other guys in the choir walking behind him making sure he was ok. Although it is possible they were just behind him waiting to get onstage, they were watching out for him nonetheless. It's good to have him back onstage in a tux again!

To close, here is a picture from the school concert with both kids making music again. Have a great week!

Photo Cred: Tiffany Wilson (Thanks for tagging us!)

8/1/17 - ***UPDATE ON YESTERDAY'S POST***

If you have read yesterday's post, you probably noticed that I was none too happy with Legacy Studios about some picture business. A friend who read the post took my not-so-subliminal hint-dropping and wrote to them asking them to reconsider. She must have been very persuasive, because I now have permission to post an image. 

First, thanks, friend, for your kind words and persuasive email! You completely and utterly rock!

Second, I want to thank Legacy Studios for considering our situation and giving us permission to post the picture. I didn't pull any punches in what I said, and while I still don't fully understand why permissions could not be granted, we are very grateful for their generosity in providing us a free download. Also, if you ever should have the need, may I recommend Legacy Studios for your portrait needs? That website is: https://www.legacystudios.com I'll even go one step further and let you know that there's a Groupon for photography classes from them in Keller, if you're local. You can find info for that here: Groupon to Photography class in Keller

Also, here is the most recent email they sent to me:

Hello,

I am so sorry to hear about your difficult situation. I hope you know that everyone here at Legacy is sending you are warmest wishes. I have attached both the image and the copyright for you. Thank you for reaching out to to us, and we are wishing you and your family the very best. 

Finally, because it was pretty central to yesterday's post, I've decided that the tux picture would be the keeper. Here is the man himself, complete with Copyright permission. Enjoy that smile!

Sam in Tux[Photograph]. (2017, July). Legacy Studios, Getzville, NY.

Permission requested and given by Legacy Studios.

7/31/17 - (Sort of) Lazy Days of Summer - finally

Sorry it's been so long since the last update. I worked until a few of weeks ago, and if you're following my Facebook posts, you already know about the last two weeks and my gallbladder adventure. The short story is that I no longer have one, and everything went well. I should be ready to go for the beginning of the school year next week, which can be good or bad, depending on how you look at it.

As for Sam, the 'no news is good news' adage certainly applies to the lapse between posts. Sam has had a few things going on, all of which have been positive. He has spent the summer back at PATE for rehab, and he's continued to show progress in the goals they have set for him. While there have been no adverse effects from the Botox, we haven't seen a huge difference in improvements either. That's a little disheartening, but we're not giving up on it entirely. He has a Botox check next week, and we're going to talk about maybe increasing dose. Additionally, PATE is going to give them info that might help the injection locations be more precise. Hopefully, they can find the magic combination!

Sam also had a neurology check-up where they (finally) went over the sleeping EEG from May. The doctor was reserved, yet encouraging. The really great news is that there is no new damage and no seizure activity. The reserved part comes in with the prospect of future recovery gains, and even that we viewed as positive. The damage to the right side of Sam's brain was so extensive, that we often forget that there was also damage on the left side. That said, the doctor said he saw continued improvement on the left side and fully anticipated continuing to see that happen. He didn't make percentage statements, like "he'll recover 100%" or anything like that, but it was very positive. (Jim was the one at the appointment, so if I'm incorrect, I hope he will make the correction!) As for the right side, the news is pretty good there as well. Again, improvements were noted, and the doctor said he fully expected improvements to be made, except...he wouldn't specify at what speed or to what degree. The damage is so great, so any gains he makes are phenomenal. We are also pushing up against the magic 2 year recovery window. That is the general measure of time typically given for the greatest improvements after the initial trauma. 

We are still encouraged that he is making improvements, and often it is a case of finding the deficits so he can work on them. A recent example showed up when Sam was working on sight reading practice for his All State preparation. (See next paragraph.) He does fine reading Solfege going up a scale in order (do-re-mi, etc.) but going backwards, he cannot. We'll put it in the category of Curious Things That Sam Lost, along with telling time on an analog clock, the last 3-4 letters of the alphabet, and capital letters. He has already gained back those skills, so we'll just get the Solfege taken care of, too. Long story short on Sam's brain: it will continue to recover, although we don't know at what pace. A long time ago at the beginning of this journey, I maintained that no one could understand the way that boy's brain worked before the accident, so why should we now? He takes limitations as a personal challenge, so I'm looking forward to seeing how he defeats this round of obstacles! 

Other than rehab this summer, Sam also went to choir camp to prepare for All State. He will not give up on the dream of going back and is busting his butt like he never has. That said, he's got his work cut out for him. He has a big team of supporters behind him, and we all want him to have every opportunity to go as far as he can. We cannot predict how this will all turn out. What I can tell you is that there will be NO student involved in the All State process that will work harder than Sam, and we will be incredibly proud of him no matter how far he goes. We will also be grateful that he is here to be able to go through the process at all, since at one point that was an option that might not have been available.

On that note, we've got a significant milestone coming up in a little less than a year. As proof of that, here you go:

___________________________________

So, here is what was supposed to happen in this space: I had a copy of the proof of Sam in his cap and gown ready to go, along with some others in the post. However, after all of our curriculum work this summer, it has been drilled into my feeble little brain that I needed permission to post them. I wrote to Legacy Studios saying that I wanted to post the a few proofs with the words "proof" all over them, including that I would cite them as the creators/owners. I received a very polite email saying that would be Copyright infringement, and would I like to buy a digital download? The cost of those would be $600, they would be unretouched, and I would still have to print them out at additional cost. Since I did not agree that that price was reasonable for 4 pics with words across my kids' faces, I cannot post them here. I was considering posting the passwords, but 1) I still don't know if that's legal, and 2) if I ever purchased a package, (which let's face it, it's graduation pictures, I'm going to do that--once I rob a bank or something) there would be retaliation. The last thing I need is to spend lots of money for pictures of my kids with an extra eyeball in the middle of their foreheads or dangling boogers or something more creative. So instead, I will just leave their email address here right here:

customercare@legacystudios.com

In case you wanted to share your opinions with them. (They already know mine.)

___________________________________

And while we're at it, we'll share some twin love...

___________________________________

This is where Sarah's grad picture was going to go. 

Again, that address is: customercare@legacystudios.com

___________________________________

This is happening, people!!!! We found some other skills deficits during picture taking. For example, he thought he was smiling with his mouth closed when in fact he was not, and had a look like he was completely unimpressed. He was looking at his ID card on the way home and was very quiet. I asked him what he was thinking about, and he said he didn't like his picture because his smile was crooked and he didn't know that until he actually saw it. 

___________________________________

This was going to be a picture of Sam in his tux, with a slightly crooked smile.

___________________________________

I told him that I loved that smile and thought it was one of the most beautiful things I'd ever seen in my life, because there was a time when we didn't know if that smile would even be a possibility. He got quiet again and finally said, "You make a good point and have made my argument moot. I like it now, too." Because #perspective. 

Have a great week/end of summer/school prep time, and to my teacher friends, we can do this!

Sam's Journey - Of Botox and Summer Vacation

We made it through the school year! Everyone passed and/or got their work done, and we can close the book on another year. It's hard to believe that Sam & Sarah only have one year left, and that I'm making appointments for their senior photos. Even though we have a pretty busy summer ahead of us, we're really excited right now. Sarah's headed out for college visits with Jim, I'm doing some work, and Sam's got...REHAB!!! We got approved yesterday, which is good, since it's starting on Monday. Yesterday was Botox day. We had no idea what to expect since it's his first shot at this treatment. Correction--we knew what was going to happen, but we didn't know how Sam would react to that many shots. He's not a big fan of pain. In fact, he's not even a fan of minor irritation. End of the story first - he did great. There were a couple of shots that he really 'noticed' and had to breathe through, but overall, it was pretty quick and uneventful. They spray where they're giving the shots with this really cold numbing stuff (not the official medical term) but since it's an intramuscular injection, it still doesn't feel good. He had four shots in his arm and three in his leg. The doctor used an EMG (electromyograph) that detects where the right muscle is she wanted to inject. It's kind of a cool process if you don't mind the needles. Getting pre- and post-instructions and getting prepped took longer than the actual shots, which took about 5 minutes total. He is in the middle of his two days of the not-moving-around-too-much time period because we don't want the Botox moving out of the target area. After that, he'll be wearing his AFO (leg brace) a lot more, even if he's not going anywhere. Then on Monday, it's back to intensive rehab. The goal is keep the muscles flexible so they don't atrophy. We're also hoping that with rehab, he can rebuild more brain-muscle connections, and gain more movement and balance on his left side. If he works as hard and does as well as he did last time, there's no telling how much he can recover. We're really looking forward to seeing how far he can go with this new combo. Rehab can be really brutal, but Sam has always given 100% because he knows what's at stake. Even with all of the work ahead of him, he's pretty excited to go back. Besides, we can't have him just sitting around like a lump on the couch this summer. The only slight bummer in this new plan is that he's not going to come off the Baclofen yet. The doctor wants to see how the Botox does to make sure that's the thing that's working. We have another appointment in August to see how it's doing, so hopefully it can come off then. We'll keep you posted on how everything goes.

The only other medical event was the sleep study. Aaron did a world class job of keeping Sam up. The poor boy was falling in his oatmeal he was so tired. Jim took him to the appointment. They attached all the sensors and wrapped him up, but before letting him sleep, they did some different things. They had him blow on a pinwheel for 2-3 minutes (that might have killed me,) and they flashed a strobe light a little bit for which they had him cover his eyes. After that, Jim said that the guy turned back to Sam to tell him he could sleep, and he was already out like a rock. That boy sleeps like a typical teenager, although his brother still holds the household record. They only had him sleep for about 15 minutes, and when they woke him up he didn't even believe he'd been asleep. After that, he was on his way, although he required a shower before going to school to get all the goop out of his hair. We still do not have the results, but his next neuro appointment is in July. I'm guessing if they found something really horrible, they would have told us by now. We'll keep you posted on that appointment as well.

Now that we're in full-on slug mode, there's not much else to report. Aaron should be headed out to Alaska next week, but that's about as exotic as we get. I hope you all have a fun and relaxing summer, and especially for you school-type people, that you get some time to do things you might not normally get to do during the school year. In keeping with sloth-like state, here's a picture of Sam during the sleep study. Thanks for all the continued prayers!

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.