Bennett's been doing pretty well the last few weeks since his last seizure.
Physical Development--He's pretty stable on his feet nowadays! He struggles on terrain like grass, woodchips, hills, etc. but he can manage it, it just takes a lot longer than most other kids who are 21 months old. He even kind of started running this week chasing us and letting us chase him! His giggle when he gets into a chase is just the best sound :). He still can't get the hang of staying upright when he tries to go down a slide, but we keep working on that core strength so hopefully that comes soon.
He learned how to swing in a big kid swing this week by himself! (With very close supervision, obviously, haha) That was a really really cool milestone to hit!!
Cognitive Development--His expressive language (what he can say) hasn't changed much in a few months. He still has some consistent signs and can verbalize a few sounds ("Daaaa"-mom and dad, "up!"-up, "baaaa"-bath, "uhlalala"-water and Olivia, "caaaaa"-car), but hasn't really picked up any new verbal words or sounds. He is trying to mimic our sounds all of a sudden, which is super fun. If we say "Can you say _____?" he'll actually try. His sounds aren't usually even close to ours, but he's pretty convinced he sounds exactly like us, haha! Maybe it's the beginning of getting a wider sound vocabulary and even some words? Hopefully! It would be nice to have other people be able to understand what he's asking for sometimes.
His sign language is about the same, but he has picked up a few new signs lately (macaroni, but I can't think of any others right now, haha). And he's just gotten very consistent with the ones he knows. He doesn't really use them spontaneously anymore to ask for what he needs. Very rarely he'll sign "help" if he can't reach or open something, but for the most part we have to prompt "do you want this? do you need help? Are you hungry?" At least he's able to confirm what he wants when we guess right though, haha, we'll take it!
So overall, his expressive language is soooort of improving? A tiny bit.
His receptive language has improved a lot though! He understands what we're saying now the majority of the time, which means he can actually respond to things we ask him to do. He'll actually bring us something now if we say "Bring it to me, I can help you!", which is a HUGE improvement. So even though he can't exactly communicate to us what he needs, at least he's able to understand more of what we're trying to communicate to him. We're thrilled with that!
Feeding Development--He still can't really chew with his back teeth, which means he swallows everything he eats whole, or he just spits it out. His diet has to mostly consist of pureed vegetables and fruits, yogurt, Gogurt (still his favorite), bread, Eggos, and other things that will dissolve in his mouth. I do think he's slowly getting the hang of chewing using his back teeth though. We've been working on just manually opening and closing his jaw to get him to understand what it feels like and yesterday he had 4 BITES of ground beef in his chili (he looooves chili, haha) which he actually CHEWED and SWALLOWED!! He was chewing the beans pretty well too! So maybe we're making some good progress there. It just feels like a glacial pace to me, haha. Luckily Olivia is also delayed so she's not in a high chair yet, or we'd have two babies in high chairs both basically eating the same foods!
Sensory Development--He still seems to need a TON of vestibular input on the day if we want him to be content and able to focus on anything inside for any extended period of time. Vestibular input is basically big movement, so for him that's mostly swinging or being thrown up and down, riding in a stroller for a while, being swung in a blanket between Dave and I, etc. And then baths always seem to provide a lot of the tactile input he needs as well. He's still sleeping perfectly though, so he doesn't seem to need deep pressure or anything to really settle down at night. He just needs about an hour and a half of reading in his crib quietly before he's ready to fall asleep, but we're not complaining :).
So overall, he's not exactly making strides in his development, but we're really proud of how hard he keeps working at his language and physical development even though it seems to be really difficult for him. It's definitely fun to be able to take him to the park and actually see him play with some things instead of just crawl around. Some of his favorite things right now are reading books, drawing on paper (and the walls, chairs, furniture, etc.), watching Daniel Tiger, exploring all of the drawers and cabinets, taking things in and out and in and out and in and out, haha, and playing with Olivia and seeing her giggle at him!
Thursday, September 20, 2018
Thursday, September 6, 2018
9/6/2018: The Seizure That Ended the 6-Month Streak.
The last post I wrote over a month ago was about Bennett starting to walk independently, which felt like a miracle!! I'm happy to report that his walking has only gotten more stable as time has gone on, which is even more of a miracle considering he had a seizure just 3 days after my last post. We were 1 week (to the day) shy of 6 months seizure free and I was really looking forward to celebrating that milestone, so this seizure was more difficult than most of the other ones for me. I felt gutted.
July 27, 2018. Bennett and I were lying in bed and he was watching Daniel Tiger (of course) on my phone while I was trying to catch a little more sleep before fully starting the day, when all of a sudden I heard choking noises and looked down to find him in a full-blown seizure--bloody drool dripping from his mouth onto my comforter. It lasted for a total of about 18 minutes start to finish, with a cluster of 4 generalized tonic-clonic seizures in there. I gave him the first dose of the emergency med (the one we had at home) right after the second seizure, but they didn't stop until the EMT's got there and gave him another dose. So in total I gave him 1.8 mg of nasal Versed, which didn't stop them, and about 10 minutes later the EMT's gave him another 1.5 mg, after which the seizures stopped within 30 seconds. He responded to the Versed great again--no respiratory issues and woke up fussy, but not having regressed at all.
He had been sick that week with a pretty nasty cold so I had actually been telling Dave earlier that I was worried he was going to have a seizure since this was pretty much the exact circumstances before his last one. He had just taken his first few independent steps, he had a cold (rhinovirus), and then he had a seizure after hitting his head. This time he had just started walking independently confidently, he had a cold (also the rhinovirus, as it turns out), and then had a seizure, but with no identifiable trigger.
I think this seizure was harder for me because I've had 6 more months of being engaged in the SCN8A community and coming to grips with the fact that sometimes seizures send our kids to the hospital for days or weeks at a time. Sometimes seizures cause sudden death. Sometimes seizures cause a complete loss of developmental skills. Sometimes seizures cause pneumonia. Sometimes the seizures can't be stopped without an induced coma. You get the picture. There's a lot more fear surrounding seizures now that I've watched 2 more of our young SCN8A kids pass away. And I was alone this time. I texted Dave and our nanny, Nicole, and they both headed over even though it was 8am in the morning (bless her!). Nicole got there first right after the paramedics arrived so she could help with Olivia, and since they let us transport Bennett to the hospital ourselves (quite a fight to refuse the ambulance...), Dave took him and I stayed for a few minutes to grab some things for the hospital before Nicole drove me over. (Our other car was in the shop that day, of course, which meant Dave was on Frontrunner when he got my text and had to Uber down back home.)
Thankfully, once Bennett had gotten some sleep and we were out of the hospital back home (couldn't get an IV in his veins after 4 attempts, including his head), he was acting like he hadn't even had a seizure! He was still walking, babbling, signing, etc. To say we were relieved is a massive understatement. I sort of live in constant fear that one day he'll have a seizure and wake up not knowing who we are or how to communicate with us. It's happened to some of the other kids and it terrifies me.
July 27, 2018. Bennett and I were lying in bed and he was watching Daniel Tiger (of course) on my phone while I was trying to catch a little more sleep before fully starting the day, when all of a sudden I heard choking noises and looked down to find him in a full-blown seizure--bloody drool dripping from his mouth onto my comforter. It lasted for a total of about 18 minutes start to finish, with a cluster of 4 generalized tonic-clonic seizures in there. I gave him the first dose of the emergency med (the one we had at home) right after the second seizure, but they didn't stop until the EMT's got there and gave him another dose. So in total I gave him 1.8 mg of nasal Versed, which didn't stop them, and about 10 minutes later the EMT's gave him another 1.5 mg, after which the seizures stopped within 30 seconds. He responded to the Versed great again--no respiratory issues and woke up fussy, but not having regressed at all.
He had been sick that week with a pretty nasty cold so I had actually been telling Dave earlier that I was worried he was going to have a seizure since this was pretty much the exact circumstances before his last one. He had just taken his first few independent steps, he had a cold (rhinovirus), and then he had a seizure after hitting his head. This time he had just started walking independently confidently, he had a cold (also the rhinovirus, as it turns out), and then had a seizure, but with no identifiable trigger.
I think this seizure was harder for me because I've had 6 more months of being engaged in the SCN8A community and coming to grips with the fact that sometimes seizures send our kids to the hospital for days or weeks at a time. Sometimes seizures cause sudden death. Sometimes seizures cause a complete loss of developmental skills. Sometimes seizures cause pneumonia. Sometimes the seizures can't be stopped without an induced coma. You get the picture. There's a lot more fear surrounding seizures now that I've watched 2 more of our young SCN8A kids pass away. And I was alone this time. I texted Dave and our nanny, Nicole, and they both headed over even though it was 8am in the morning (bless her!). Nicole got there first right after the paramedics arrived so she could help with Olivia, and since they let us transport Bennett to the hospital ourselves (quite a fight to refuse the ambulance...), Dave took him and I stayed for a few minutes to grab some things for the hospital before Nicole drove me over. (Our other car was in the shop that day, of course, which meant Dave was on Frontrunner when he got my text and had to Uber down back home.)
Thankfully, once Bennett had gotten some sleep and we were out of the hospital back home (couldn't get an IV in his veins after 4 attempts, including his head), he was acting like he hadn't even had a seizure! He was still walking, babbling, signing, etc. To say we were relieved is a massive understatement. I sort of live in constant fear that one day he'll have a seizure and wake up not knowing who we are or how to communicate with us. It's happened to some of the other kids and it terrifies me.
Subscribe to:
Posts (Atom)