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.