7/27/19: 1 Year Seizure-Free!!

Today I woke up to an alarming memory on my iPhone that showed me "One year ago today...". It was a picture of Bennett in the hospital--hooked up to monitors with red puffy eyes and a big guaze bandage wrapped around his poor hand after being poked a million times to no avail. He had just had his longest seizure cluster ever, the rescue med hadn't stopped it until the paramedics gave him another dose of it, his tongue was still bloody, he was disoriented and distraught, they couldn't get any blood--even from his head, and Dave was trying to comfort him. 

July 27, 2018: American Fork Hospital

One. Year. Ago. Today. 

I can't even believe it. It brings me to tears when I sit and reflect about what this means to us. 

It means 1 year of no ambulances showing up at our house, no hospital trips, no messing with medication levels.

It means 1 year of incredible developmental gains. A year ago he couldn't even walk. And now he's walking, running, jumping, playing, talking, dancing, counting!

It means 1 year of mostly restful sleep and less and less panic attacks as the months have gone by about SUDEP. 

It means 1 year of watching Bennett be the sweetest older brother to Olivia (when he's not hitting her and stealing her toys--as he is most of the time lately, haha). 

It means 1 full year of holidays without seizures.

It means 1 more year with Bennett than some of the other parents in our group had with their kids. 

It means 1 year of feeling like I can function like a normal human being again.

It means 1 year of no developmental regressions--only gains! 

It means 1 year closer to a cure. 

And mostly it means 1 more year with this sweet boy and feeling a little less afraid that this awful disease will take him from me too early. 

I can't really articulate how meaningful these milestones are to me, because I can't really articulate the depth of the fear every time he has a seizure and for 20 minutes I don't know if he's going to come back to me. It's not a feeling I would wish on anyone. And today, we're celebrating that it's been an entire YEAR since we've had to feel it!!!

Way to go, Bennett, you keep defying expectations and we couldn't be prouder--can't wait to get to year TWO! 

1 year!!

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!!

2/24/18: Starting Trileptal, New Baby Sister, and a Helmet!

Lots has happened here in the past 3 weeks. Just 4 days after Bennett's last seizure, baby Olivia decided to come! I went into spontaneous labor with her and she was born 36 weeks to the day. I mostly labored at home because I didn't really think I was in labor (I've been contracting like this for months), but when it had been about 4.5 hours and the contractions weren't stopping I told Dave there was a sliiiiight possibility I might actually be in labor and we headed to the hospital around 11 pm on February 7th.

Thankfully, Dave's mom was here so we could just peace out and know that Bennett was fine and she had everything under control in case we ended up actually having the baby. It took about 3 hours for the triage nurse to be convinced I was legitimately in labor, but we were eventually admitted and my midwife was called around 2am I think. After a short and not very intense labor (until the very very end) Olivia was born around 5am on February 8th! She came out screaming and didn't need any assistance after the birth. She also stayed out of the NICU miraculously, which meant we were able to come home within 36 hours of delivery!

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Just a few days before Olivia's birth, Dave went to see Dr. Morita with Bennett to ask her to write us a prescription for Trileptal (Oxcarbazepine). I tried to ask her to just send it in since I was on bedrest and couldn't really do the appointment and we had already talked about how this would be the next step if we had another seizure, but she made him come in anyway. So we started the generic of Trileptal on Tuesday, February 6th I think?

As far as side effects go--I would say his appetite definitely started to increase after about 2 weeks of being on it. He's finally eating some table food and not just taking bottles! He did seem just exhausted in the beginning. Like too tired to function, but then he'd have insomnia basically and not be able to sleep. But I think that leveled out around a week and a half after starting it (so hard to remember because it was all right after Olivia was born). I haven't noticed any effects developmentally except that he actually did start to take some independent steps about a week after we started it. And he kind of seems like he's babbling more right now (3 weeks in)?

We wanted to start the Trileptal and get off the Zonisamide because I'm worried the Z is holding him back developmentally, but we've been too gun shy to start another wean and risk losing seizure control yet. Especially with the new baby and still trying to adjust to life with 2 under 2.

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In other news around here, Bennett loves his little sister. He doesn't really understand "touch soft", but we're trying to help him understand that he can't hit her in the face. He's very interested in her and likes to be around her when we have her downstairs with all of us. He's a little confused about why her bottles aren't his for the taking, but he's getting used to it. 

He's been walking more and more each day starting about 2 weeks ago when he took his first steps! With this development we decided we needed some head protection from him in case the next bonk on the head triggers a seizure. We found a relatively cute soft helmet on Amazon and he kind of hates it, but has been pretty good about keeping it on for the most part. And it has definitely saved his head a few times already. Who knows if hitting his head would cause a seizure, but for right now, we don't really care to find out. Better safe than sorry.

This week he ate chili, lots of pudding, yogurt, took some bites by himself of a graham cracker, and devoured some of those baby food pouches, plus lots of other mini-successes I'm forgetting right now. This is all pretty huge as he's been struggling a TON with eating real food--even baby food purees for about a month now. My mom has been in town helping for the last 2 weeks and she has basically made it her mission to get him eating table food and doing less formula through the night and day. 

At this point, he has slept about 4-5 nights in a row with NO BOTTLES. This is pretty incredible, because I can't remember the last time we didn't give him a bottle through the night. Actually, I don't think we ever have. He's almost been sleeping through the night no fussing too--but either way, he's self-soothing if he does wake up. She hasn't had to go in very often because he can get himself back down to sleep when he wakes up. I can't even explain how life-changing this is. Of course, we also have a 3-week old baby now to keep us up. But still, 1 baby rather than 2 waking up through the night is HUGE. 

My mom has been taking both of the kids through the night since she got here so Dave and I have had uninterrupted sleep for the first time in a looooooong time, and we are so sad she's about to leave, but so grateful she's been able to help us get Bennett in such a good place. I also think he's leveled out on the Trileptal and that has helped things, but her efforts have for sure been a part of it! 

Hopefully we all survive when she's gone in 3 days....

1/29/18: 3 Months Seizure-Free!!

Well, we hit a pretty huge milestone on Monday, the 29th of January. 3 Months with no seizure activity! And this was during the Phenobarbital wean which is practically unheard of for SCN8A kids. We are so relieved, and thrilled to have gone so long no seizures!

Even though I've been contracting consistently for a few months now, and they've really picked up the last few weeks, as well as having high blood pressure, I wanted to make the day special for Bennett--especially since we kinda dropped the ball on his birthday and didn't even make him a cake...so I made cupcakes for him right before I headed to an OB appt. to check on baby girl. I figured we could celebrate with Bennett once I got home after dinner :).

Unfortunately, I got sent over to labor and delivery to be monitored because of high blood pressure, protein in my urine, and painful contractions which have left me dilated to a 3 and 70% effaced at just 34 weeks (movement from the last two weeks, unfortunately). I fought really hard to not have to go in to be monitored because I really wanted to celebrate with Bennett (even though I logically know he has no clue what's happening, haha), but in the end I agreed to go at least get labs drawn. I cried on the way over because I was so sad to miss celebrating with my baby on what feels like a HUGE day for us. And I ended up staying hooked up to the monitors for a few hours, so I definitely missed dinner and bedtime. It was the first time I felt a little resentment (or something close to it? Maybe not that strong), or a pang, that I had to miss an important moment in Bennett's life because of this second baby we're about to welcome to the family. But pretty quickly I had the rational thought, "She is probably going to have MORE than enough opportunity to be missing her parents on important days because of medical emergencies or other crises for Bennett. It's going to work out. You'll find the balance." As hard as that is to acknowledge, I'm pretty sure it's an accurate statement, and I'd be lying if I didn't say I was a little nervous to start navigating that dynamic with our kids. 

Anyway, so my labs came back with incredibly high protein levels in my urine, and high blood pressure, but they still felt comfortable just diagnosing me with preeclampsia officially, keeping me pregnant and sending me home just watching very closely from here on out for symptoms of HELLP or preeclampsia to escalate.

We were able to celebrate one day late and Bennett still loved his cupcake and I had time to make him an SCN8A onesie finally, so that worked out great. :) We're pretty grateful to have seen him make such strides the past 3 months. He's getting closer to clearly saying MaMa and DaDa and maybe actually knowing what they mean. He's communicating better with us overall. He can climb the stairs all by himself! His sleep has still been pretty stable--NO SWADDLES--halleluuuuuujah! And he is even more confident with his cruising and pulling to stand than he was before. Just waiting for those first real steps! Congrats Bennett, keep it up!!

Remus took his cupcake ^^.

1.24.18: Day 7 of ZERO mg of Phenobarbital and He Sleeps!!

I know I said I wouldn't ever say it out loud if Bennett started sleeping better for us because that always seems to curse things, but we're just so thrilled over here that I want to shout it from the roof tops!! Our 13 month old is able to put himself to sleep WITHOUT a swaddle, WITHOUT a baby swing, and WITHOUT a 1-2 hour bedtime (and naptime) routine. Whaaaaaat? We're beside ourselves, honestly.

It actually happened a few days before we did our last Phenobarbital drop. Dave left for a work trip to Florida about 10 days ago (Bennett was at about day 7 of dropping to 7.5mg at this point) and up until he left, putting Bennett down was a complete disaster. Dave had to take him even when it was my night with him because I couldn't rock him to sleep long enough before my body would start contracting to the point that I needed to be in the bath or something to manage the "pressure" (aka...pain). Needless to say, I was more than overwhelmed and terrified for Dave to leave us for three days and two nights where I'd be handling things 100% on my own. But we both prayed (probably more fervently than we have in a while) that somehow things would work out and I'd be able to get Bennett to sleep without going into preterm labor while Dave was gone.

The very first morning Dave left (Monday, January 15) I was contracting like crazy for some reason so when it came time to put Bennett down for his 9am nap I literally had no choice but to just give him his bottle in the rocking chair, sing a short song, put him in the crib with his blanket and hope for the best. It sounds crazy, but when I'm badly contracting, even leaning over the rocking chair footstool to swaddle him makes it significantly worse, so I opted to leave it out of the routine and just see what happened.

MIRACULOUSLY, and seriously by the hand of God we're pretty sure, he cried for 4 minutes and passed out! I was so shocked and relieved that I started tracking his sleep for every nap and bedtime for the next few days in case it helped me figure out the secret, haha. Turns out, I really didn't need to do that. He repeated the same amazing feat at his 1:45pm nap AND bedtime!! Over the course of the three days Dave was gone I was actually able to completely wean Bennett of the swaddle (cold-turkey!), shorten our bedtime routine to under 10 minutes basically, and move his bedtime back up to around 6:30pm instead of the 8:45pm we'd been stuck at for a little while. (Mind you, we had previously tried no swaddle, letting him cry for a while, etc. and it had NOT worked up to this point in the last few months. We're talking hours of endless screaming and completely inconsolable...Something big shifted this day.)

He still woke up through the night, but it was literally for a diaper change, bottle, and back down. Less than 5-10 minutes each time, no problem. I can't even describe how incredible this was. After months of hours and hours trying to rock him to sleep and feeling like we were defusing a bomb every time we transitioned him into the crib, it just felt like a dream. It WAS a dream, and still is! He can be put in his crib now and play anywhere from 1 minute to 30 minutes on his own before just falling asleep by himself, and he doesn't always cry when he wakes up--sometimes he stays in and reads his books or entertains himself for an extra 20-30 minutes. This has been heaven-sent for us right now mostly because my contractions have been so strong and they get triggered by lack of sleep and lifting Bennett, so the less I have to do that throughout the day and the more naps I can take, the better!

We were nervous to drop his Pheno completely after having such amazing sleep for three days, but we were also just so eager to get him off of it all the way that we decided to drop it the night Dave came home. Since we did that, we've noticed maybe a slight regression in his overall demeanor throughout the day (clingy, fussy, tired), and he's definitely shortened his naps significantly even though he's exhausted, but overall his sleep has not really suffered! We are so grateful. I was telling Dave tonight that it's so crazy that even after 7 days of him being able to go down like a normal kid I am still floored every single time he does it. It just doesn't even feel like real life. I wonder how much EMDR therapy we're going to need to recover from the trauma of the hell that was trying to get Bennett to sleep for so long?

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I am worried that now that the Pheno is out of his system we're seeing a higher Zonegran level (he's at 40 mg 1x/day) which might be contributing to the exhaustion and zombie-ness we've seen emerge since the final drop, so we're considering backing off of it just a little bit to see if we notice any improvement. That's scary though because other than the CBD oil, Zonegran is the sole medication for seizure control right now, and we're less than a week away from 3 months seizure-free!! We would hate to break that streak, obviously. But some parents have said that Zonegran caused as much of a fog as Phenobarbital did for their kids, so really it would be best to be off of it and on one of the meds that are better for our SCN8A epileptic kids. We just don't think we can face another full titration-to-therapeutic-level-of-a-new-drug-while-managing-new-side-effects-before-starting-a-new-wean-while-managing-those-side-effects with a new baby so close (I'm 34 weeks now). 

We saw good seizure control at just 25-30 mg/day before though, so I would feel comfortable titrating down by about 5mg per week or two weeks if it means he'll sleep better at night (still waking up twice regularly) and be less of a zombie during the day. We'll just have to see how ambitious we are once we feel like he's fully leveled off the Phenobarbital and it's not in his system anymore. CBD continues to help improve his mood and clarity immediately after we give him his morning dose and afternoon dose. But again, even though it has come with no side effects we can tell so far, I would love for him to not have to be tied to so many substances every day :/.

Overall, Dave and I have just felt profoundly grateful for the last week of relative calm we've had. Someone asked Dave at church how Bennett was doing and his knee-jerk answer was something along the lines of "He's hangin in there...", but then he took a moment and realized that actually, we can honestly say right now, "You know what? He's doing really well! He's cruising around everywhere he can, so close to taking those first independent steps. He's trying new words all the time and trying to communicate with us more. He's been almost 3 months seizure free. He's completely off of the drug that was probably causing some severe delays in development. He's sleeping better than he has since he was a baby basically. And we've been able to get some solid sleep this week which has changed our lives! So overall we're actually doing really well this week!"

It's amazing what a little sleep can do for you, right? Keep it up Bennett-boy! You're doing great!!

12.11.16 Birthday Boy--1 Year!

A year ago today I gave birth to Bennett! Sometimes it feels like this year has been 10 years, and other times it feels like the year flew by. This has been the craziest (understatement of the century...) year of our lives and I would never have imagined we'd be dealing with so much as we're celebrating our little man turning 1, but here we are! And we're all alive and standing--which I think we should be proud of, even if it hasn't been pretty along the way.

1-December 11-January 11: The first month of Bennett's life feels like a dream when I look back on it. I was so happy and elated after the birth (mostly just to not be pregnant anymore, let's be honest), and he was such a good baby--we soaked in all the cuddles, skin-to-skin, swaddle baths, and middle of the night feedings that were so quick and effortless with him. Bennett was always incredibly alert and aware of his surroundings (now we have a better understanding of why), and it was fun to watch him soak in the world every day. We celebrated our first Christmas together as a family of three and Bennett was blessed by Dave when he was just 3 weeks old.



 


2-January 12-February 11:The second month of Bennett's life included a lot of Bennett accompanying me to school and being a dream baby during class. At this point Bennett's favorite things were bath time and diaper changes (hard to believe he ever loved diaper changes, haha). He still loves baths more than anything.



3-February 12-March 11: Bennett's third month included a flight to California for Corinne and David's wedding! He did awesome on the flight, and he got to meet his cousins Emily and Sam for the first time (Emily is just 3 weeks older!) while we were down there. It was heartwarming to watch all the women I grew up with admiring get to hold and cuddle Bennett when we were at the reception and saw so many friends. There was so much love to go around! At this point, we were definitely needing the swaddle to get Bennett to settle to sleep and he was starting to get a little more fussy like a normal baby, haha.



 





4-March 12-April 11: Bennett saw his first ever movie (Beauty and the Beast in theaters) with us and actually really enjoyed it. He's always been a music baby, so he was enthralled through most of it--a phenomenon we have yet to see repeated...haha. This was when "Helpless" from Hamilton became the song that could remedy anything for Bennett basically. He had to have his tongue and lip ties cut twice in this 4 week period because they reattached the first time and it was causing problems with him taking in too much air and refluxing after eating. He was a champ, but Tylenol was definitely our friend during this stretch.




5-April 12-May 11: During this month we were working on selling our house, buying a new house, packing up our old house, finishing the last semester of classes for both Dave and I, I had carpal tunnel surgery on both wrists simultaneously so my mom came out to be my hands for a little bit (thank goodness!), and we took a trip to Moab with my family where Bennett got to go on his first hike and swim in a (mildly warm) hot tub for the first time which he LOVED. It was an INSANE push to get everything done, and at the same time Bennett started rolling over intentionally as well as babbling a ton! We were pretty sure we were going to die at the end of this month.






6- May 12-June 11: Bennett found his feet during this time period and as soon as he realized he had them he started using them like fingers! I've never seen a baby so dexterous with his feet, haha. We also got his highchair and started trying to introduce him to some solid food--without much success.



7-June 12-July 11: We officially moved into our Spring Creek Ranch house here in Lehi, which is when things got a little insane. We tore out the entire house (basically) and lived with no floors, or water or electricity downstairs. We were making bottles every night and all day using the bathroom sinks upstairs and we only had carpet up there (and our bed!) put in once we got back from Toronto where I presented at a conference. We also went to the Rackham family reunion in Couer D'alene, ID. That was our first long road trip as a family of three and Bennett did surprisingly well! We were able to make the trip both ways in one day--no stopping overnight anywhere. This month we also discovered that Bennett LOVED the water. He's definitely a little fish! He loved spending time in the family hot tub (again, mildly warm) when we stayed in Toronto. He was also starting to mimic our expressions and sounds. Oh, and we found out we were pregnant again right after we got back from the family reunion trip.

8- July 12-August 11: The eighth month of Bennett's life was definitely the scariest month of our lives. On July 14th, Bennett had his first generalized tonic-clonic seizure. It lasted approx. 5 minutes, happened right as Dave was getting him ready for bed after his bath, and we had no idea what to do. The paramedics arrived quickly and by the time they got there Bennett had stopped convulsing, was breathing again, and just seemed very out of it and tired. We headed to the ER--not in an ambulance because he seemed stable according to the EMTs. That was a long night that included 4 unsuccessful IV attempts (until they finally got the NICU team to come just put the IV in his head), a CT scan that came back clear, a mostly inconsolable Bennett, and no answers. We did get to come home that night and didn't have to be admitted, which I'm grateful for, but it was terrifying all the same.





At this point I was already ridiculously sick with my pregnancy, but didn't know exactly what was going on yet (i.e. the extent of the hyperemesis gravidarium) or why Bennett's crying was triggering my vomiting so much, so I asked my parents if I could come to CA early for what was supposed to be the family get together that summer the next week so my mom could help me with Bennett, which was a godsend. 10 days after Bennett's first seizure--a couple days after having been in CA at this point--he had another generalized tonic-clonic seizure that started the same way--not breathing for about 30-60 seconds before convulsing with all limbs and eventually losing all muscle tone--all while unconscious. Annie and I headed to the hospital as the rest of the family was at church already (I was running a few minutes late and hadn't gotten in the car yet thankfully--remember, I was throwing up all day every day at this point still) and once we got to the ER they told us they'd need to admit us to run all of the tests for Bennett overnight and the following day. At this time Dave was in Utah working on getting floors in our house and they only allowed one parent to stay with the baby in the pediatric unit overnight so in between vomiting in the bathroom and dry heaving everywhere else, I handled Bennett by myself (with the help of some really kind nurses who took pity on us) all night as we attempted an MRI unsedated (successfully!!) and had more labs drawn which again all came back normal. We also had our first EEG done the following day which my mom was able to come handle for me--thank goodness because I felt like I was dying at this point after being up all night vomiting and taking care of Bennett, and he was not easy during the test.



Before we were discharged (after what felt like forever), the pediatric epileptologist from the area came and evaluated Bennett before discharging us and told us she thought we should do genetic testing because she was noticing some floppiness and a little less interaction than she would expect from him at 7 months. She then put us on Keppra, but wrote the prescription for 10 TIMES the amount that was appropriate for Bennett's weight. The only reason we realized something was wrong was because the following day at home he began having what we now know were "drop seizures" or "atonic seizures" where you just lose all muscle tone, go unresponsive briefly, and then come back. They are much harder to spot and identify than the typical tonic-clonics because they're so short and subtle, but we called the doctor to ask if that was what could be happening and we learned that he had been given a severe overdose. We were reassured over and over that there was no way the Keppra could possibly be causing these seizures, and that there is no such thing as overdosing on Keppra. It's the "safest drug" out there--overdosing isn't even possible. Now 5 months later, we know that that was NOT true. And SCN8A epilepsy kids actually do have a toxic reaction to Keppra so not only was he on a terrible medicine for him--but he was on an extremely high dose that continued to cause seizures for us for weeks to come.

Bennett didn't improve quickly, so Dave flew down that night to California because we were so worried about all of these new seizures (that everyone assured us could not possibly be seizures...) and he stayed down there with us for a few days before we felt comfortable that Bennett could make it through the flight back to Salt Lake without having a seizure on it. We had an appt. set up for right when we landed with a neurologist here in Utah and thus began our saga with the doctors up here and trying to fight for good care for him.

We continued with the Keppra--the doc up here actually raised the dose to stop the breakthrough seizures, but he didn't believe that Bennett was having drop seizures. For some reason he was convinced that kids Bennett's age couldn't have those yet--he was wrong. When Bennett had more generalized tonic-clonics he added Phenobarbital to try to add more control. Bennett stopped seizing as regularly, but still had some breakthroughs, unfortunately (now we know there's a good possibility Keppra was actually causing some of these, but none of the doctors believed me when I said I thought it was making him worse).

During this month of Bennett's life, he stayed with complete strangers (at the time) from about 8am-5pm every single day because I was too sick to get out of bed for anything other than IV fluids at the hospital twice a week--let alone feed myself or him, shower, or function at any basic level. Our Spring Creek ward here stepped up in an incredible way and set up a network of volunteers to take Bennett for me while Dave was at work so that I could rest and do my best to stay alive essentially. Bennett was amazing during all of this because he was pretty content, very mild, and didn't seem to struggle with separation anxiety like we expected him to at that age. And we will forever be grateful for the angels of the Spring Creek 1st Ward who stepped in to be Bennett's second moms for about a month and a half before they even knew us at all. We could never have done this without them.

9-August 12-September 11: At some point during this crazy stretch I finally got on a feeding tube and a very strong anti-emetic and started to feel more like myself. I was still incredibly weak and recovering from being emaciated and dehydrated for so long, but not vomiting nearly as much. Because I was finally feeling up to showering regularly again and even putting on makeup about once every 2 weeks we decided to take Bennett to get some 9-month pictures done in the beginning of September. This is where it feels like everything changed for me.





It was very clear that the photographer expected Bennett to be much more expressive, interactive, and responsive when he made silly sounds or faces. He was surprised Bennett could barely sit on his own and only cracked one or two feeble smiles the entire session. I went home feeling very unsettled. To the point that I started doing some intense research about developmental milestones and such and realized that Bennett had actually plateaued at about a 6 month developmental level and we hadn't seen progress since his seizures had started. He was not babbling or mimicking anymore, he never responded to his name, he didn't seem to care who his mom and dad were as opposed to random strangers holding him. It was almost impossible to elicit a smile or laugh from him, and overall he just seemed like a very zoned out, drugged baby--not the Bennett we knew a few months before.

At this point I was still too sick to be taking Bennett all day by myself, but I had just enough energy to get the ball rolling asking for genetic testing and switching neurologists until we found one who would order it for us. She also listened to me about the Keppra and suggested coming off of it first, but wanted us to do a pretty slow wean. Honestly, this period is all still a bit of a blur to me, but I do know that as we started to come off the Keppra, we began to get our baby back.

10-September 12-October 11: Mid-September I started taking Bennett full-time again on my own, which was still difficult, but at least it was feasible and it was great to be able to actually be his mom again. We also completed the entire Keppra wean in this time period and immediately saw HUGE improvements in both seizure control and developmental areas. He started sleeping through the night better with less wake-ups, he would make eye contact and respond to facial expressions, he responded to his name about 50% of the time, began working on crawling on his knees, and started recognizing Dave and I as his mom and dad, which was so incredibly heart-warming I'm not sure I'll ever really be able to fully express what that meant to me. We were also working with Kids on the Move here in Utah which is the 0-3 years early intervention program for kids who are at-risk or on the spectrum in order to help parents work with them on their skills as much as possible at home to encourage social and emotional development. We started to see improvements like crazy when he came off the Keppra and all the therapists were stunned by his progress compared to his baseline assessment.

11-October 12-November 11: The gains from the Keppra wean just kept coming this month! Bennett started clapping on command, began to wave, would wiggle his head when we asked or did it ourselves, had a better appetite for solid foods, and had better sleep. We will never forget October 18th, the first day we saw Bennett belly-laugh again for me and go back and forth effortlessly with smiles and joy. It had been 4 months since we had seen that from him, and I think a part of us had already mourned the loss of that side of his personality--so when it returned, we were so overcome with joy and gratitude, we still get emotional when we talk about it.

We will also never forget November 8th, the day we got the genetic testing results which showed his mutation on the SCN8A gene. We thought our lives had already been turned upside down just with the generic diagnosis of epilepsy with no underlying cause and dealing with developmental delays...Little did we know how much harder it would become with a specific diagnosis. We're still SO glad we did the testing and know about his mutation because it has brought a whole new family into our lives of parents of kids with SCN8A epilepsy who are literally the only other people in the world who understand how we feel right now. And the access to the research regarding our kids' specific sodium channel issue has helped us guide treatment and given us a direction to go, which is comforting. But at the same time, we now live in a space of perpetual ambiguity--we will never know what Bennett's life will turn out like, but we now know that he has much higher odds than most of passing away early from SUDEP, he is more likely than not to be developmentally delayed, and his seizures will likely never be fully controlled. This is a hard place to be and there are times where it is still too much to bear and I just break down from feeling overwhelmed by the lack of answers. But I am so so grateful to the people before us who have worked and fought so hard for our kids to get the research and the treatment they deserve--even though they are so few in number. And I'm grateful to have a group of parents and friends that will celebrate the fact that Bennett tried out a new consonant this week as hard and as energetically as if he had won a gold medal in the olympic--because they just get it.


12-November 12-December 11: Here we are! We are 6 weeks seizure free (knock on wood!), in the middle of weaning off of Phenobarbital, and we have continued to see developmental gains since starting that. Bennett can cruise by himself at this point pretty regularly. He still falls once in a while, but seems to bounce back easier than before. He started pulling himself up on his crib rail by himself this week. We're actually seeing him crawl long stretches on his knees finally (not the army crawl), he's trying out new consonants other than just "babababa", and it sounds like he's trying to copy some of what we are saying. He's still smiley and giggly and he sure loves his dad and mom. His sleep is awful still (but it always has been), but we will take awful sleep with no seizures over great sleep and terrible seizure control.

He is working so hard to start walking independently, and he is starting to really love books. He's always enjoyed picking books out as well as flipping the pages, but for the first time he is actually pointing out pictures and recognizing phrases from the books which is new. He's starting to be more exploratory with table food as long as someone feeds it to him off of an adult fork and plate, haha. But that is tons better than before where he would refuse almost everything. We were able to take family pictures together last week and capture some great smiles from him which is a huge relief to me, and he still loves baths best, continues to love his carseat, stroller, and drives in the car (particularly if accompanied by Hamilton or some T. Swift), and is a happy, fun baby when he's not in the middle of some crazy medication change or post-seizure haze.

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Dave and I never thought we would be sitting here a year later with what seemed like our perfectly healthy baby at birth feeling overwhelmingly grateful for little moments like when he lifts his head up as he's falling asleep and is actually reassured by the fact that it's one of us who's holding him--some of these kids completely lose their memories of who their parents are when bad seizures hit. We never thought we would celebrate our 1 year old just barely starting to crawl on his knees or babble in a way that sounds nothing at all like what we're saying, haha, but just be so grateful to see him trying to form any sounds with his mouth and tongue. We never thought we would worry every time we said goodbye to him that he could have a seizure while we're gone. We never thought "seizure" would be such a familiar, yet still scary, word in our lives. We never thought we would still be swaddling our son to sleep at age 1 when he is completely dysregulated and inconsolable in the middle of the night. And we definitely never thought we would ever be so grateful just to see him make it to age one.

As rough as this first year has been on Bennett and us, though, we've also experienced a profoundly different sense of gratitude I don't think many parents ever really experience.

It's a strange thing to watch your child's personality slip away from you day by day, to live in fear of his next hospitalization, to be worried constantly that he could regress any moment and lose every skill he has--including just holding his own head up. So even though he doesn't sleep through the night, never has, and possibly never will, I can't even count the number of nights I've just held him for an extra 15 or 20 minutes while silent tears of gratitude stream down my cheeks for the simple fact that I have my baby here to hold close, and that the sound of my voice is at least some comfort to him--that I'm not a complete stranger to him. I can't even tell you how thrilling it still is every time I hear him get lost in a deeply joyful laugh, or spontaneously smile at me. Most kids do that effortlessly with their parents, but knowing that it doesn't come effortlessly to Bennett and that it could be taken away from us again means it fills my soul each and ever time it happens. I'm not exaggerating. I walk around very close to tears most days--some days happy tears because I'm overwhelmed with gratitude for everything we have with him, and other days sad tears for the fear of his future and the unknown. But overall, it all feels very soul-stretching and emotional because loving Bennett over the last few months of this chaos that is our life feels like it has somehow become an even more vulnerable, terrifying, threatening, and at the same time rewarding, sometimes close-to-Heavenly, and joyful experience than loving him was before seizures, medications, and mutations became regular words in our vocabulary.

I'm not sure I'll ever say "I wouldn't have it any other way"...because, truth be told, I would love for Bennett to never have another seizure and for all of this to have just been a bad dream, but I can honestly say that I am grateful for the new perspective I've gained from these last few difficult months being Bennett's mom, and for the unbelievable love and support our family, friends, and God have (sometimes very literally) lifted us through this with. We will forever be humbled by and grateful for our village helping us raise this cute boy!

Happy first birthday Bennett boy!! We love you so much! <3