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!

Day 7 of 0mg of Zonegran!!

it has been exactly 1 week since we dropped our last dose and went to 0 mg of Zonegran. We decided to finish the wean starting the day after his loop recorder surgery. As far as effects we’ve noticed: appetite is ever increased, language and gross motor skill development/motivation seems to be continually regressing, and sleep has continued to be excellent—down around 6:30, bottle st 6:30am, back down until around 8 or 9. It’s a dream. He does seem more fussy and clingy during the day right now and we’re attributinf it to the end of the wean, but we’ll see if it levels out here soon or not.

It’s hard to know what’s a direct effect from the wean vs just coincidental timing. But it seems that the increased appetite and zero effect on sleep has been consistent with each drop. His mood and development are trickier.

Overall lately it’s been difficult to watch him lose motivation to work on his walking and communication. For a while there he was really really eager to try to stand and take steps back and forth or around the kitchen. He would flash a huge “cheese” any time he was proud of his success. It was really fun to watch him be excited to progress. Now it seems like he dreads walking, he feels like we’re forcing him, and he isn’t very successful much of the time.

His communication is similar right now. For a while there he was trying hard to mimic words and connect them to meanings. He actually said “grandma!” Multiple times intentionally to indicate his grandmas. But now we just hear this high pitched whine that’s pretty universal and keeps him from really trying to specifically communicate what he wants with us. Our Kids on the move therapist worked with me this week on how to not anticipate his needs, and actually create scenarios where he has to reach out for help or protest verbally so that then I can help him remember I’m there and I can help if he asks me. He sometimes seems to understand what’s happening, but mostly just seems to get frustrated that I keep delaying giving him what he wants, haha.

It’s been difficult on Dave and I lately. It’s hard not to watch a regression and wonder if this is the beginning of the end of his development. That just seems like such a common trajectory for our SCN8A kids. We feel like we’re being faced with the reality of the very real possibility that he may never walk or communicate verbally with us. It’s pretty overwhelming and scary for us, and it gets hard during the days when we’re trying to get him to communicate with us and we can just see that his brain can’t connect what we want him to do or why. It’s discouraging and repetitive without much positive feedback to keep us going.

We’ll see if as he levels out of the Zonegran wean we see some progress in his development. I’ll keep you posted!

3/24/18: Day 5 of Zonegran 10 mg Wean

We dropped Bennett’s Zonegran again 5 days ago so he’s been on 10 mg once a day in the mornings instead of 20 mg. I would say this drop hasn’t gone quite as smoothly as the others, just because he has been a little fussier overall this week. I do think he’s experimenting with his language  more now though and his appetite has skyrocketed again. Honestly, the increas d appetite may be why he’s been fussier—I’m not used to feeding him so much so it took me a day or two to realize he was so hungry!  His sleep has continued to be great—sleeping through the night with no bottles. Able to settle himself right down for naps and bedtime, but his naps have definitely been shorter and not as consistent as usual (which is unfortunate for me, haha).

He and Olivia have settled into a pretty good routine at this point so it’s feeling like I can do this 2 under 2 thing, which is an improvement from where I was at last week emotionally by far. Bennett’s getting used to having Olivia around 24/7 and he’s getting a little more patient when I need to run her upstairs and leave him downstairs and things like that.

In a few days we are going to drop his Zonegran so he’s completely off of it. I’m expecting a breakthrough seizure once we’re off, just because almost none of the SCN8A kids have seizure control with a single medication at a time. But if we could stay on just the Trileptal that would be awesome!! It seems to have less side effects than the other drugs so far. The only negative we’ve noticed is it may be affecting his overall balance. But we aren’t even really sure about that.

We may hold off on the final drop of Zonegran just because he’ll be going in on Monday (3/26) to get his loop recorder placed for his heart and we don’t want to push his little body’s seizure threshold any more than we have to. No seizures is still the goal—even during weans!

3/23/18: First Physical Therapist Appointment!

Today we had our first appointment with James from Kids on the Move, the physical therapist assigned to Bennett's team. We wanted him to come evaluate Bennett to make sure there wasn't any physical abnormalities or issues getting in the way of his development as far as walking and balance go. He's been cruising along furniture by himself since he was about 11 or 12 months old, but we're now at 15 months and he still can't really take independent steps. He can take about 4-5 "falling steps", but he's struggling to stay standing on his own very long, get from a sit to a stand on his own, and take steps where he's in control long enough to actually get somewhere. We've been at this point for about a month now, and we expected to see more progress once he took those first independent "falling steps".

We really liked James, and Bennett took to him immediately. As far as evaluating him, he was really thorough watching him walk and crawl and bend down, etc. all over the kitchen and family room to get a good sense for his muscle tone and abilities. Overall, he said he didn't see any glaring physical abnormalities or issues--a little low muscle tone (which we already knew), some hyperflexibility (seems common with SCN8A kids), one of his feet turns outward when he takes steps, but other than that he didn't think there was anything physically wrong with him--he thinks he's just mostly afraid to walk on his own.

Bennett doesn't squat down like typical toddlers do to pick things up, or go from standing to sitting. He always puts his knees down and kneels first to go down and pull up to things. James showed us how to motivate him to squat down to reach for things instead of popping down immediately to his knees, he also showed us an exercise to work his squatting muscles which should help him with his core strength, and he introduced us to the doll stroller, which they call "Dumbo's Feather", haha.

It's just the frame of a little doll stroller and the point is to make Bennett feel like he's holding on to something while he's walking, but it actually doesn't provide any resistance at all, so he's walking on his own, he just doesn't realize it. He did incredibly well with it! His balance was WAY better than Dave and I thought it would be! He was able to walk about 10 foot stretches, it was amazing! Hopefully we can keep practicing and get his muscles a little more developed so he can start to feel more confident in his walking unassisted.

It was a great first visit, and hopefully we can keep this momentum going and help him develop his gross motor skills more quickly now!

3/15/18: All the Feelings

I don’t know any parent who feels like their job is easy. We’re all trying to do our best at something we have no idea how to do. We’re all trying to balance what keeps us fulfilled with meeting the needs of everyone around us. I think we all probably experience moments of doubt, insecurity, guilt, and overwhelmed ness (us that a word?).

Maybe it’s because I’m only 5 weeks post-partum, maybe it’s because I now have two kids, or because I’m exhausted, but being a parent to a child with special needs is starting to feel heavier than it has up to this point. The moment Olivia was born it was like everything hit me all at once. Everything I’d compartmentalized during the pregnancy. Bennett’s seizures (which started literally 1 week after finding out we were pregnant), his SCN8A diagnosis and the prognosis that comes with that, the horrific pregnancy, the fear that Bennett could pass away young and unexpectedly, the fear that Olivia will always feel like everything is about Bennett because medical emergencies are bound to happen and take precedence over important moments for her, the fear that after this awful pregnancy and resenting the fact that we now have two children 14 months apart, I may not be able to bond with her or love her as much as I love Bennett. I’m not sure how rational all of these feelings and thoughts were in the moment, but I basically had a panic attack and everyone needed to leave the room while I handed Olivia to Dave so I could breathe and calm down for a minute.

The weeks following this meltdown have been more of the same. All of a sudden I am feeling the fear of losing Bennett more poignantly than ever before, I’m struggling to bond with Olivia and I’m wracked with guilt about it. I’m worried about Bennett’s developmental progress more than before, And I’m itching to get back to my old life where I had the flexibility and freedom to see clients when I wanted to, write my dissertation when I wanted to, and overall just be successful in this PhD program I only have 1 year left in. I’m tired of being on sick leave, but I feel guilty wanting to leave my kids for hours at a time. I don’t know the best option for childcare and I don’t know if I want Olivia to be with someone else so young or if I can handle having her stay with me while I try to be productive.  I don’t even know if I want to continue along the same track with my dissertation or take it in a completely new direction at this point.

I’m so tired all the time, not to mention anxious, and I just don’t know how to do everything. While I feel better physically than I have in 9 months (Halle-freaking-lujah!), I’m conflicted now because I want to do all the things, but I’m still recovering from 9 months of my body being completely wrecked as well as an intense birth with a lot of pain during recovery. At least before I was so sick that I didn’t have to make any of these hard decisions about where to spend my time and how to prioritize my life or balance being a mom with being a therapist and student. I just needed to white-knuckle it and survive until Olivia was born, which meant there were no decisions to be made really.

I think overall I will probably get the hang of this work/life balance thing eventually, but for now it just really feels like I need a break. I need a break where I can sleep through the night, not worry about Bennett having a seizure or going into cardiac arrest, not freak out every time Olivia forgets to breathe and turns blue before she starts breathing again (which she always does, thankfully), not have to feel the guilt of wanting to leave my kids to get back to my PhD and the equal amount of guilt for not working on my PhD at all for the last solid year. I’m not sure how new moms do this, and I’m especially not sure how people balance their lives when they have a special needs child constantly throwing curve-balls at them, but I have a whole new respect for people who do it with (what looks like) grace. I’m hoping I can get to a good place quickly where I feel fulfilled professionally and as a mom to my kids, but until then, wish me luck navigating the waters through this tough transition in my life. And thanks for the support from everyone. It is so appreciated even if I’ve been too overwhelmed to respond to you.