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!