9/20/18: General Bennett Update

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!

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.

7/24/18: Look Who's WALKING!!!!

Bennett has had a great stretch the last month or so. We are STILL (cross your fingers) seizure free, which brings us to 5 months and 3 weeks today!! I almost can't believe it. As much as I can't believe he started walking 3 days ago!!!!!!! I didn't even share any videos of it until the second day because I was scared it would disappear and then I'd have to tell everyone that he lost it as quickly as it came. But here we are, and we have a little walker! He seems happier and more independent. And they weren't kidding about the walking/talking/eating connections. It was like a switch flipped 3 days ago because all of a sudden he's imitating words. Like real WORDS. Not just sounds. He's trying to say what we say to him. It's kind of incredible. And he's started to chew his food with his back teeth!

All of these things sound so small and insignificant when you compare them to the typical milestones of a toddler his age (19 months). But for Bennett, who's been stagnant at around a 10 month developmental level in all of these areas for 11 months, these are HUGE. And it's incredible to watch them all happen together so spontaneously. I wish I could connect the dots with what led to the changes, or what finally clicked for him, but honestly nothing has changed in the last few months, so we have no idea. Other than the fact that we just spent a week in Island Park, ID with my family, which meant lots of walking and talking cousins his age around him. That may have provided motivation for him to try some new things. And then of course the walker my parents made him has given him the confidence to try to walk everywhere he goes. I think that obviously made a huge difference for him and we're so grateful my mom pushed so hard to do that for us.

What's especially interesting is that just last week we met with James (PT) and after taking a video and slowing it down, he was able to isolate the fact that Bennett's left leg drags along and almost limps when he tries to walk. He was discussing cerebral palsy with us because he said that's how Bennett was presenting, even though it would be very rare to have CP develop non-congenitally. Except that a lot of the SCN8A kids have cerebral palsy, or at least CP-like features. So it wouldn't be unheard of. He was a little confused because Bennett didn't present exactly like anything he'd seen before, but he emphasized that it looked neurological to him since it wasn't totally consistent 100% of the time and his muscles don't seem to have any issues.

You can see that left leg dragging here.

When he walks independently now we still see some unevenness, but his leg looks WAY better than it did last week, which makes no sense! If it's neurologically based (which I agree with), it's confusing that all of a sudden he seems to be doing better. We'll just keep watching it and meet with a peds orthopedic surgeon soon to see what they think we should do about it. (Not surgery, obviously, but just who to work with to make sure we're using that leg and helping that foot and hip develop as best as we can).

Medications are the same at this point. 2 mL of Oxcarbazepine (Trileptal) 300 mg/mL 2x a day and CBD oil (5 drops) once a day in the afternoon. We don't want to mess with the cocktail since he seems to be doing great with seizure control and even development as of 3 days ago! Hopefully he keeps this up and we just keep seeing him learn more! We're so happy! We wish we could just be carefree and grateful he's walking, but it's always in the back of our mind that any seizure or med-change could take all of this away, which is so sad to us, but we're trying to just stay present in the moment and celebrate this HUGE victory!! Go Bennett, go!!!

Here he is in all his glory!!

6/15/18: 4 Months Seizure Free!

We've gone exactly 4 months and 11 days since Bennett's last seizure and I'm so grateful, but also feeling like another one is inevitable at this point. Once we hit the 3 month mark (last time's record), I started to feel anxious again about when the next one would come. But so far being on the Trileptal alone seems to be giving us solid seizure control!

As far as his development, Bennett's walking hasn't changed much in the sense that he still struggles to make it past just a few independent steps at a time. But we got a walker from our physical therapist last week, and then my parents made him a smaller PVC walker and ever since we got that, Bennett has just taken off. He still can't walk on his own, but he LOVES running around with the walker. The first two days he was literally running laps up and down the street, haha. It was pretty emotional to see him feel that sense of independence for the first time. I just wish he could walk and run on his own--not just for him, but because then I might stop wondering "Will he ever walk?". Since a lot of the SCN8A kids don't walk, it feels like a very real and scary possibility that Bennett might not either. That wouldn't be the end of the world, but it's just hard to not know.

His speech has stalled as well, if not regressed again. He doesn't mimic sounds or words, but he can sign pretty regularly and effectively.  He's actually started signing chains of words like "want" "food", then point to what he wants. It's amazing to be able to communicate with him, but it also means he's acting much more like a typical toddler when he doesn't get to do what he wants. It's like before he didn't get frustrated because he knew we didn't know what he even wanted. But now he knows we're actually saying "no", haha. So that's fun...

5/19/18: Signing Time!

The last post about Bennett talked about how awful the week had been with him (screaming for hours on end with nothing to help), but I wanted to update that because he has actually had a really really good few weeks since then. He is in such a cute stage. He wants to cuddle with anyone and everyone, but especially Olivia. He’s LOVING soft blankets (never showed an attachment to blankets before). He is smiley smiley if you work for it. His “cheeeese” is so cute I can’t even handle it. As far as his walking and talking go, he’s still in the same place if not a little bit regressed in the walking department. He can stand forever if he’s distracted, but he’s back to mostly taking a few falling steps or just crawling where he wants to go. It seems like a motivation issue more than anything, but who knows?

His talking seems to depend on the day. I can NOT figure out why some days he’s babbling and imitating up a storm and other days I can barely get an “aaahh” out of him. But on those great days he seems to be really trying to imitate! He’s just pretty bad at it, haha. He can do percussive sounds better than vowels and consonants combined. And he has pretty good pitch-matching abilities when he sings along to music. He’s also signing a few things consistently and seems to LOVE that he can communicate with us! We love it too. Right now he signs “more”, “open”, “food”, “milk”, want, “help”, “swing”, and “all done”. Most of those are really touch and go, and no one else would ever know what he’s doing with his hands, but we know what he’s doing and he has a few really consistent ones! Right now “swing” and “more” are the most consistent. Oh, and “open”, and “help”.

He's been on the same dose of Trileptal now for 3 months and 2 weeks and has been seizure free since we started it (longest streak yet!). We're hoping this isn't just a honeymoon period and we continue to see seizure control as well as developmental gains with no serious regressions. The side effects seem to be minimal and we love having a content, happy, stable Bennett!! It makes life about a million times easier than when we never know what mood we're going to wake up to.

We're grateful for the relatively good stretch we've had lately with him, we just wish we would see more progress mentally, emotionally, socially, and physically. He's way more emotionally attached to us than he's ever been, which is fantastic, but it's still hard to watch other kids his age and see how far behind he is without knowing if he'll ever catch up (or even move past this stage). Hopefully he continues to surprise us, though, and just keeps improving! We are loving our team with Early Intervention here in Utah. They've really helped us with communicating with him and getting him to engage more with us! It's such a blessing!

5/15/18: Hyperemesis Gravidarium Awareness Day

Olivia Jane Rackham. Born 2/8/18. <3

I know that this is supposed to be Bennett's SCN8A blog, but my therapist says I need to write about Olivia's pregnancy to help me process it, and today is Hyperemesis Gravidarium Awareness Day so my Facebook feed has been flooded with HG mamas doing their best to educate the world and be a little vulnerable in the hope that others like me will get more help in the future.

HG is basically morning sickness on steroids. But that doesn't even do it justice. It's more like morning sickness on steroids, on steroids, on steroids. You basically throw up from the moment you get pregnant to whenever your medical team is able to find you a management system that keeps it to a minimum, which for some women isn't until after delivery--sometimes days, sometimes months later. I was one of the "lucky ones" who found a miracle cocktail after a feeding tube helped get me semi-stable after hitting the lowest of the lows around 5 months with Olivia.

I was losing weight. I couldn't keep water down. I swear if one more person suggested I eat crackers or try ginger I was going to lose my mind and seriously injure someone. I couldn't take care of Bennett. I had to have someone take him every day for me for 2 months. I couldn't get out of bed most days. The stairs were an impossibility, which meant that some days I didn't leave the bedroom at all. I showered maybe once or twice a week. I was making twice-weekly trips to the hospital for IV injections of fluids just to stay alive essentially. I was on about 5 different medications trying to help with the endless vomiting. Not to mention the relentless nausea, which never really subsided, and still remains once in a while today. You get the idea.

Actually, no, you don't. You literally can't, unless you have experienced it yourself. My sister called me at some point to ask me what I "do" all day? I responded, ".....I literally stare. at. the. wall." Reading made me sick. Watching a show made me sick. Holding my phone made me sick. Sitting up made me sick. Listening to books made me sick. Bennett's cries made me sick. People told me to "get out, find distractions, go for a walk." That was laughable. I kept emesis bags in every single purse, car, room, drawer, etc. because if I ever had to go anywhere, it was an inevitability that I would need to vomit at some point.

I got to a point where I would eat what I was craving anyway just because I desperately wanted food to taste good, but no matter what I ate, it came back up. Nearly every time. I can't even count the number of times I called my younger sister from the kitchen sink throwing up begging her to come watch Bennett for me that day. It wasn't until after a month of this that I accepted the situation and set up full time child care for him.

I am still dealing with the effects of HG. 3 months later. I have a beautiful baby girl, and I love her and I'm grateful, but I struggled (and still struggle) to bond with her because of how traumatic the pregnancy was for me. I have so much guilt over how disengaged I had to be with Bennett during a time when he needed his mom. He was having seizures daily for over a month, and I was in the hospital with him throwing up in between holding his hand and explaining to the doctors what was happening with him. I missed his developmental delays because he was at other people's houses during the days. He was on Keppra longer than he should have been because I didn't have the energy to take him into the office to get him seen again by our then-neurologist. I could barely make it through phone calls with his doctors without crying because I was just so ridiculously exhausted and famished. No one understood. No one was willing to make allowances. We had to come in to the offices, and it was impossible for me. 

I have incredible guilt and shame over the fact that I was in so low of a place 2 months in that I wanted the pregnancy to end. I wanted it to be over. I honestly didn't think I would survive. I have guilt over the fact that Dave had to go in to work late and be home early every single day. And once he was home he was a full-time single dad to his son and caretaker to his completely dependent wife. And Bennett was NOT easy. He never slept through the night, and Dave took every single feeding. We both reached breaking points we didn't even know we had.

I have guilt over the fact that I never ever ever ever want to be pregnant again. I wish I felt like our family was complete and we were done, because I want to ensure that this never happens to me again. It literally does not feel worth it to me--which feels like the most terrible thing a mother could say. Of course having Olivia makes it all worth it logically, I just need more time to get there emotionally. And I don't think any amount of time is going to make me brave enough to want to be pregnant again.

Literally the moment Olivia was born, I had a full-blown panic attack. In the hospital room, before they had even stitched me up or put her on my chest for skin-to-skin. The tears just started flooding and I could barely breathe. Dave had to take Olivia for skin to skin because I couldn't handle her on me. I was having flashbacks of Bennett's first seizure, being stuck in my room, feeling trapped, living over the toilet for so many months, the fatigue, the resentment, the fear, the guilt. It was like everything hit me all at once and it was just too much.

Since that moment, I feel like all of those emotions have just been spread out through my post-partum period. I have suffered from severe depression and anxiety like I've never experienced before. The tiniest things are enough to completely paralyze me. I am overwhelmed by the prospect of every single day I have to be alone with the kids. I thought once I wasn't pregnant anymore I would be back to normal and feel like myself again, but that just hasn't been the case. Don't get me wrong, I feel about a million times better physically than I did during those 9 months, but I'm still reeling emotionally from the last year. I had to get in to therapy soon after the birth because I knew I was suffering from PTSD. I was waking with nightmares, having intrusive images and thoughts, having panic attacks (which I've never had before).

While a lot of these symptoms have gotten better, I'm still walking around not knowing when the next breakdown will be. I still go into a complete panic every time I feel even the tiniest bit of nausea. They tell me the more traumatic your pregnancy, the more likely you are to struggle with postpartum depression, so I guess I should have expected this. But I didn't. People talked about the emotional effects of HG lasting up to a year or more after their pregnancy, but I thought I was handling it all pretty well emotionally and would be able to bounce back quickly. I haven't. I struggle every single day to have enough energy to show up for my kids mentally and emotionally. I've become all too reliant on Daniel Tiger to entertain Bennett. I have so much guilt about the way I'm not bonding with Olivia like I want to. I have so much guilt about so many things, it's honestly overwhelming to even think about.

Maybe this is all TMI and too personal to share publicly on the internet, and I apologize if it is, but I feel compelled to share the reality of the devastation HG causes on not only the mom and baby, but on the partners and kids and families as well. Dave and I's moms had to come for weeks at a time just to help us function when it got to be too much for us.

The only way we got through this hell that was my pregnancy was because of the support of our parents, our neighbors, our ward, and friends who continually reached out to me and offered emotional support. There were plenty of people who dropped out of our lives or said stupid things that made me want to punch them in the face because they added to my guilt, but luckily, we had enough support that we were able to push through the pregnancy without feeling completely destroyed by the end.

I'm sharing this because the next time someone tells you they're dealing with severe morning sickness or Hyperemesis Gravidarium, please pleeeeease do NOT tell them about the time you threw up for a few months during your first trimester, please don't try to normalize their experience by telling them "pregnancy is tough", please don't offer suggestions like crackers or ginger--trust me, they've tried them, please don't ask if they've tried Zofran or Unisom--they have, please please do everything in your power to help support them and relieve their guilt rather than add to it. I can't even tell you how low I got when someone said something to me about how absent I was with Bennett and how he needed his mom and was probably struggling because I wasn't taking care of him like I should have been. I can't tell you how frustrating it was for people to talk to me about how much they hated throwing up like 10 TIMES during their pregnancy. It was so invalidating and made me feel completely alone in a time when I needed nothing more than to feel like I wasn't invisible. Like people could see me. See my struggle. Like I hadn't been forgotten, even though I was stuck up in my room unable to interact with anyone for months.

It's not really fair to expect that people will support you in exactly the way you need all the time, and I honestly don't want to minimize how difficult pregnancy is on most people even without Hyperemesis--I just hope for a little more understanding, a little more educating ourselves on this awful condition, and a little more support all around. If I can help even one mom in the future who suffers from this, then it would be worth it. Thanks for reading this if you got to this point--it means the world to not only me, but HG warriors everywhere. <3

5/2/18: Progress Update and CBD

This past month has been ROUGH with Bennett. PartiLly I’m sure because Olivia is here and he’s realizing for the first time that my attention is split and she’s not going away. But partially we think it’s also teething, not feeling great, medication adjustments (?), and who knows what else.

We got so desperate we actually put him back on the Zonegran for about a week, but didn’t notice a change really so we took him off of it again. His appetite has gone down this month (back to mostly just eating pouches and yogurt, not doing great on solid table food), his sleep has been alright, but he’s just sleeping less overall, hisbwalking hasn’t changed, and he’s picked up a few signs, but gets them confused a lot.

We decided to put him back on the CBD a few weeks ago and started to see more progress for a bit in his language and movement, and I still think we’re seeinf the benefits (won’t be going off again anytime soon), but it sort of plateaued.

There was a stretch of days last week where Bennett literally screamed (and I mean scream) for about 4-6 hours per day. It was very...trying. Apparently these kids sometimes just feel pain at a ridiculously intense level—to the point where some doctors hve given the parents morphing to get their kids through those bad days. Even though they don’t know what causes the screaming necessarily.

One day it just sort of stopped so we have no idea what happened. My guess is it was probably mostly teething or something, but things have been more stable since then. Still not awesome though. He’s just overall pretty fussy. Luckily seizure control has stayed good on just 2 mL of Trileptal 2x/day!