Seize The Day: 12.3.2017 Day 12 Pheno Wean and He Sleeps!!

So........it turns out it wasn't the Zonegran OR the Prevacid causing Bennett's crazy insomnia the last few days. Two nights ago Dave asked me somewhat sheepishly, "Wait...so with these new pills, is Bennett supposed to have one and a half? Or just one?" The answer was one and a half, and you can probably guess how much he'd been giving him (just one...). So Bennett had accidentally dropped to 15 mg/day of Phenobarbital, when he was supposed to be getting 22.5 mg/day per our wean schedule. As scary as that was, we were glad it wasn't the Zonegran or Prevacid that seemed to be the culprits. Once we had him back at the right level he was already sleeping better and acting more like himself--hallelujah. Poor Dave was dying from the lack of sleep and having to take care of me being sick. And thank goodness Bennett didn't have any break-through seizures or anything as a result of the mistake! So far we are still seizure-free almost 2 weeks into the wean.

Actually, in just the last couple of days Bennett's been making some great progress in his walking, crawling, and even babbling! He loves walking around in his little 4-wheeler walker, and he's able to push the VTech Sit n' Learn Walker across our carpet because it gives enough resistance to keep him going slow. He's also constantly trying to get up on his knees to get into a sit or a stand on his own from his army crawl, but for some reason he has such a hard time staying up on those knees. I honestly think he'll be walking before he figures out crawling correctly, haha.

Just the last day or two he's started really babbling a lot with us! He can only really articulate "baa baa!" but he walks around all day going "babababababa", haha. I think he is trying to say Mama or Dada, but he can only figure out the "b" sound right now. It's so fun to see him trying to communicate in other ways than just screaming or crying, haha. I really hope we hang on to and keep growing his language. This morning I caught him flipping through a book on his own just making sounds to himself like he was trying to "read" it. That was huge!!

Overall the last few days (since we leveled the Phenobarbital out) he's been really happy and explorative. It's been so fun. We're dreading the next dose drop (this Wednesday), but we're also excited to see what other connections he's able to make with less medicine coursing through his veins!

Also, I love having the pulse oximeter at home. We did stop using it those nights his sleep went crazy cuz it was just too much to handle all at once, but I was actually able to get him to sleep one night by watching which things I did soothed him (lowered his heart rate), and which things aroused him more (raised his heartrate). It was pretty cool! And we figured out how to get the Oxygen and Heartrate levels in the baby monitor view so we can just get a snap look at them if we want to in the middle of the night. I've noticed that now I'll wake up worried about him and then be able to go right back to sleep because I know if something was wrong, the monitor would have alarmed, whereas before, I'd toss and turn for a bit and watch him on the monitor long enough to be sure he's breathing and safe. I love the peace of mind that's come from the pulse ox for me.

* * * * * * * * * * * *

The other thing we had to do this week was take Bennett to get his blood levels checked. :( We're considering adding CBD oil to his med regimen (it's supposed to really help these kids with the cognitive and other side effects of the anti-epileptic drugs), but we want to make sure we watch his levels closely because it can interact with some of the traditional drug levels in his body and we want to make sure we know what's happening with all of those--especially as we wean off the Pheno. He was a champ during the blood draw, and the phlebotomist was awesome actually! I've been hacking up a lung all week, so Dave was the one holding Bennett during it all and by the time I walked in to check on him, the guy had used a mini-heat pack first on his little vein to draw it out and already tied the elastic around Bennett's arm (which usually induces severe screaming...) and Bennett was happy as a clam!

Obviously he wasn't so happy once the needle went in, but the phlebotomist was able to get the blood flowing and only had to stick him once which is nothing short of a miracle. Poor Bennett was just upset and not understanding why we were all just watching and talking to him instead of getting rid of the pain while we were waiting for the vial to fill, I'm sure, which was heartbreaking, but once we got back to the car and turned on his jam (still "Helpless" from Hamilton--has been from day 1, haha) he was just fine! We'll have to repeat those labs once we add the CBD so probably in about a month or so, which is rough, but man, if we can have that phlebotomist every time, bring it on! And Bennett was really so brave. He's such a champ to go through all this and keep bouncing back. These poor kids are so resilient it's really amazing. We're pretty proud of him. :)