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:

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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!