Brief update - all good! (July 18, 2019)

Worst. Blogger. Ever. Yes, I already know this. Since graduation last June, Sam completed his first year of college. He's going to Collin, our area's community college, and he continues to figure out how everything works. It seems like there's a new learning curve with each semester and all of the new teachers, and that's ok. He's learning to navigate his classes, and even has some pretty cool assistive technology (check out smart pen ) to help him out. 

This summer, he has started vision therapy and gotten new glasses. Apparently, injuries to the brain can age your vision to that of a "40 year old," as the doctor put it. Sam beat me (but not Jim) to bifocals, and he can finally see!  Before when he read, he would hold whatever it was about 1 inch from his face. Now, he's able to read normally and was pretty excited after he got them. Here's a picture of him right after he got them:

One thing of note: For distance vision, Sam uses primarily his left eye. Weird, considering he had a bigger right brain injury, but we'll take it. In any case, what usually happens in that case is that the other eye becomes "lazy" and eventually loses a lot, if not all of its capacity to work properly. When the doctor was evaluating the right eye, he said, "Hmmm," multiple times. In our vast experience with different types of doctors, that "Hmmm" could go really well or really poorly. After he was done, he explained what usually happened (above) and then said, "That's not happening here. His right eye moves up and tries to function with his left eye. I have no other explanation for you other than you (Sam) have a really smart brain, and that you have some higher force looking out for you." I forgot how fun it was to have God step in an introduce himself to Sam's docs. Welcome to the team, Dr. M.!

We're hoping that therapy will help him with not only his vision, but walking and general awareness of his surroundings. We'll keep you posted on how it all goes!

Also today, he went to the dentist for the first time in almost 5 years. (Yes, that's excessively gross. Sorry to those of you who might have been reading when you read that.) It went very well considering how long it had been since his last visit and all of the trauma from the coma, in addition to his ongoing problems with swallowing. There were no cavities, and the only potential issue is an uppity wisdom tooth, which would have happened anyway and for now, can wait. 

That's basically Sam's year in a nutshell. I just wanted to fill you in on his latest pursuits and to thank you for being a part of #TeamSam!

Sam's Journey - It is time

June 9, 2018

The day we thought might not ever come is here. I have not written in 5 months and 8 days, mostly because there was nothing new to report, AND we were so busy with the daily grind of getting to this day, the blog took the back burner. The basic update on Sam's health is that he had a neurology check up in May, and everything is moving along in a positive direction. He continues to regain skills even though it is not at the speed at which he was doing so before, which was completely expected. It is often difficult for us to take note of those improvements since we see him every day, but others who haven't seen him in a while continually comment on the changes they see. 

I will update you on Sam's forthcoming plans in a future entry, but for now, I'm just reveling in the day. All of the plans have been made, and as I sit back and reflect upon what this day means, I am very excited knowing that:

• Sam will be graduating on time with his twin sister and his friends with a half credit more than required. This is happening despite him missing almost a full year of in-school education.
• After not being able to speak or walk or remember the order of the alphabet not so long ago, Sam is officially an honors graduate.
• Two and a half years ago (almost to the day) we weren't sure he would still be here with us, let alone walk the stage and receive his diploma.

Life is good, God is good, and we are grateful to all of you for your love and support as we celebrate this day. We would not have made it here without you, and we hope that you are able to celebrate with us wherever you are. Peace and love and all good things, #TeamSam. You still rock!

Sam's Journey - Happy New Year!

I realize I'm breaking all kinds of blog etiquette rules by not posting an entry for 3 months. The good news is that there's nothing overly panic-inducing going on with Sam. Compared to some of the places we've been on this journey, we will happily accept that. Here's what's been happening in the last 86 days...

Last time I wrote, Sam was getting ready to start serial casting. It was very successful, and they stopped the process shortly before Christmas. He had a total of 7 casts, At least we think it was 7 because it all kind of blended together. He got to pick a different color every week, so at least he had some variety, although I think he's still kind of bummed that he never got to try out the glow-in-the-dark one. He got some good improvement in range of flexion back, and we're now trying to maintain that with more frequent use of the brace, along with a leg immobilizer at night. His walking is ok, but he had to adjust his gait because of the difference in the cast, so he's figuring all of that out again. Overall, it was well worth the inconvenience of getting pulled out of school for appointments. The biggest hassles fell to Jim because of dressing and showering, but on the upside, we didn't have to find matching socks for awhile. One more awesome result, you may have seen on Facebook, but I'll post again here:

We have movement in the left foot! 

When we checked back in with the PMR doc, she noted that his left knee was overly relaxed, so she cut his dose of Baclofen in half, and he only takes it at night now. He's been on that ever since he left OCH rehab, and I've been really anxious to see how he would do without it. It keeps muscles from constantly firing, but the side effects include slower brain function and slurring of speech. If there's anything Sam does NOT need, it's those particular side effects. When we took away the morning dose, we watched him very closely since coming off too quickly can cause seizures, which he's already trying to keep at bay with the Keppra. He had no issues though, and while I'm not seeing a ton of difference in the knee, yet, I'm glad we haven't seen anything negative from that either.

The PMR doc is also the one we go to for the Botox. The last round was better than the first one, but it still wasn't as beneficial as she had hoped. She is willing to try one more round (which is billed at about $14,000 a round) but she also talked about surgery again. We don't really want to head down that road at this point just to recover one isolated movement in his hand. We might change our minds after graduation, but until then, we'd like to stay out of the hospital as much as possible. 

I told Sam I was going to be writing a blog entry and asked if he wanted me to include anything specific. He said that I should include that he hasn't been using the patch for awhile. It's technically for motion sickness, but one of the side effects is that it causes dry mouth. Sam has had difficulty with saliva control ever since the seizures last year, and they were pretty helpful. Unbeknownst to me, he hasn't been using it for awhile, and overall, it seems like his saliva control has improved. While his improvements are not as mind-blowing as when he first began, baby steps are better than no steps at all.

Some of you may have seen on my Facebook page a request for prayers for a young woman who was hit by a car, resulting in very similar injuries to Sam's. Her prognosis was not very positive for a while, but I'm happy to tell you that she is doing incredibly well! She is responding well to therapy, and by all accounts is as much a walking, talking miracle as Sam. God is good! Thanks to all of you who added her to your prayers! I have one more request for you. My co-worker is going into the hospital tomorrow (Tuesday, 1/2) for a C-section. This is her first child, and she and her husband are not the only ones excited about his impending arrival! I'd appreciate any prayers you could say for a safe delivery, and a quick recovery after surgery. Thanks!

On December 12th we hit the two year mark since the accident. I've been going through the blog entries, and it's so hard to fathom how far Sam has come. It almost seems impossible that it all happened, but when I read past posts, it transports me right back to each situation. Sometimes I take for granted how much progress he has made, but reading through everything is a great reminder of how amazing he really is. We're looking forward to seeing what he will do with this new life, and we're honored to share in that journey with you.

To close, I thought I'd share with you this video. We got a recumbant bike for everyone to use, but especially for Sam. Since he's not in rehab officially, it's good for him to have different things to do around here. Hope you all have a happy and healthy 2018!

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:

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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.)

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

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

Again, that address is: customercare@legacystudios.com

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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. 

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

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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!