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!