Well, Christmas morning was fun with Bennett. He got up early and we all had a blast opening presents for a while with my family. He LOVED his new dump-truck toy from my mom to him and his amazing quiet book from Dave's mom. He also liked his maracas from us and some other little things we got for him. It was fun to watch him crawl around and enjoy exploring the ribbons, wrapping paper, boxes, and new toys.
The rest of the day went well too, so we decided to drop by a quarter pill that night so we would have help during the days if his nights got crazy. He actually did alright the first night, and the second night was a little tougher, but not awful. He woke up more, and he was more difficult to put back down after his bottles, but at least we didn't have hours of screaming nonstop during the night!! So today is the second full day and third night of the wean and we definitely noticed more overall fussiness, making some weird movements with his mouth (nonstop raspberries all of a sudden?), and it took him about an hour to actually go down tonight for bed. Hopefully he'll sleep relatively well so we don't fall apart from sleep deprivation, haha.
***I never finished this blog post--which is probably a good indicator of about how well he was doing during this drop...haha***
Wednesday, December 27, 2017
Sunday, December 24, 2017
12.24.17 Christmas Eve
So we tried to drive through the night with Bennett on Tuesday the 19th to get to California for Christmas. Yeah...that was a TERRIBLE idea. When he woke up for his first bottle around 12 (had been driving about 3 hours) he would NOT go back down. It didn’t matter what we tried. And we tried for about 2 hours before we finally called it quits and stayed the night in St. George. Even once we were in the hotel he was still so worked up it took about an hour to get him to sleep and he kept waking up over and over again for no discernE reason.
We got up and started driving after breakfast the next day and we made it the rest of the 6 hours (turned to 7) by making sure we stopped around mealtimes and let him get out and about and really pushing forward when he was napping. I think we’ve decided it’s much easier to travel with him during the day than at night, and we’ll never do that again. It was awful.
Now that we’ve been here a few days though, he has finally started to calm down his sleep a bit. He still wakes up more than 2x every night and he can’t settle without a swaddle, but we think we’re seeing him level on the Pheno drop finally. Unfortunately, we need to drop again so he’ll basicLly be at 15 mg/ day. We want to drop it here in CA where we can sneak naps in if his sleep goes to hell again because my family is around to help with him. But we are seriously dreading it.
Overall during the days he’s been doing awesome. Super engaged, learning things, waving this week! Loved being with all of his aunts uncles and grandparents. Still sitting on his own and crawling like a fiend. Trying to walk. Etc. but we have to get off the Pheno so we’re gonna have to risk. Drop in daily mood.
Today was Christmas Eve. It was an emotional church for me because for some reason “Once in royal David’s City” was performed and really brought up all of the emotions SCN8A holds for me. I was just looking over watching my siblings And parents play with Bennett and couldn’t help but think of how heartbreaking it would be if we were ever to have a Christmas with our family where he wasn’t there. Or if we ever had to miss Christmas because he was in the hospital recovering from a seizure or something.
I think that talking about Mary and her giving birth to Christ, her baby boy, just triggered all of my strong feelings of love for Bennett and with those seem to come all the feelings of fear lately. I was also just overwhelmed with gratitude for how well he’s doing right now and how happy he is during the days. I’ve been so grateful my family is getting to spend as much time with him as they are this week. I want them to get to know him and love him like we do and up to this point he hasn’t really spent much time with most of them.
Anyway, I’m not sure why today was one of those days for me, but I know that watching Bennett play baby Jesus in our family nativity (and be totally chill and adorable the whole time, haha) was the highlight of this Christmas season for me. It was so tender for me to see him be held by my cousin and just seem to enjoy every minute of it. I don’t want to ever have to think about how we would cope if he were ever gone. So tonight I’m just thinking about how grateful and happy I am that he’s here, and he’s doing so well. Can’t wait for Christmas morning tomorrow! He loves the ribbons on the presents, so I think he’ll have a ball!
We got up and started driving after breakfast the next day and we made it the rest of the 6 hours (turned to 7) by making sure we stopped around mealtimes and let him get out and about and really pushing forward when he was napping. I think we’ve decided it’s much easier to travel with him during the day than at night, and we’ll never do that again. It was awful.
Now that we’ve been here a few days though, he has finally started to calm down his sleep a bit. He still wakes up more than 2x every night and he can’t settle without a swaddle, but we think we’re seeing him level on the Pheno drop finally. Unfortunately, we need to drop again so he’ll basicLly be at 15 mg/ day. We want to drop it here in CA where we can sneak naps in if his sleep goes to hell again because my family is around to help with him. But we are seriously dreading it.
Overall during the days he’s been doing awesome. Super engaged, learning things, waving this week! Loved being with all of his aunts uncles and grandparents. Still sitting on his own and crawling like a fiend. Trying to walk. Etc. but we have to get off the Pheno so we’re gonna have to risk. Drop in daily mood.
Today was Christmas Eve. It was an emotional church for me because for some reason “Once in royal David’s City” was performed and really brought up all of the emotions SCN8A holds for me. I was just looking over watching my siblings And parents play with Bennett and couldn’t help but think of how heartbreaking it would be if we were ever to have a Christmas with our family where he wasn’t there. Or if we ever had to miss Christmas because he was in the hospital recovering from a seizure or something.
I think that talking about Mary and her giving birth to Christ, her baby boy, just triggered all of my strong feelings of love for Bennett and with those seem to come all the feelings of fear lately. I was also just overwhelmed with gratitude for how well he’s doing right now and how happy he is during the days. I’ve been so grateful my family is getting to spend as much time with him as they are this week. I want them to get to know him and love him like we do and up to this point he hasn’t really spent much time with most of them.
Anyway, I’m not sure why today was one of those days for me, but I know that watching Bennett play baby Jesus in our family nativity (and be totally chill and adorable the whole time, haha) was the highlight of this Christmas season for me. It was so tender for me to see him be held by my cousin and just seem to enjoy every minute of it. I don’t want to ever have to think about how we would cope if he were ever gone. So tonight I’m just thinking about how grateful and happy I am that he’s here, and he’s doing so well. Can’t wait for Christmas morning tomorrow! He loves the ribbons on the presents, so I think he’ll have a ball!
Tuesday, December 19, 2017
12.19.17 Next Drop of Pheno—Still Love CBD!
We are officially at about 19 mg of Phenobarbital a day at this point. We dropped a quarter pill about 7 days ago now. A quarter pill is equivalent to basically 3.5 mg—that’s how slow we’ve decided to wean him from here on out. We just can’t do another week of hell-sleep as he adjusts to the wean. We’re still at the 40 mg of Zonisamide a day and it seems like his nocturnal seizure activity (or whatever it is) has stayed away so far. We’ll see what happens when we drop the next quarter Pheno pill. We plan to drop it in 3 days, right after we get to California for Christmas after a 12 hour drive.
Overall this past week Bennett has been pretty content, which we attribute almost entirely to the CBD. We give him about 5 drops 2-3x/day which is a little higher than the recommended starting dose, but we just notice such a HUGE improvement as soon as we give him the drops that it’s difficult not to want to give him more. Of note this week is his new ability to get in and out of a sit on his own no problem. This is pretty life-changing. Now he can crawl to a toy, get in a sit to play with it, crawl to a new one when he’s bored, get into another sit, etc. he isn’t constantly upset and frustrated now and really only clings to us when he wants help walking or standing. He is definitely Italy needing to be swaddled every night still. He’s having a hard time self-regulating, even though he can nap during the day with no swaddle like a pro. Not sure what that’s about.
He seems to have leveled on the Zonisamide too because just yesterday Dave was remarking that he hasn’t been letting his tongue hang out or drooling nearly as much as last week. So weird that that seems to be a side effect of the Zonisamide, but he’s definitely keeping his tongue in his mouth more. And he’s also started babbling so much more than he ever has. He will babble to himself, try to copy our noises, babble when reading books, etc. It’s really great to hear!
This week he’s also showed more interest in other kids when he’s playing than he ever has. He’s interacting with them and genuinely smiling and responding to them when they try to play with him. It’s totally awesome.
We wouldn’t be surprised if he’s walking in the next month or so barring anything drastic happening to interrupt his progress, and we definitely plan to stay the course with the CBD as long as we keep seeing these improvements. I think it’s helping make the Pheno wean smoother as well, which is great. Most parents say it’s getting off the first 50% where they see increased seizures so with our next drop we’ll be there still with no seizures! (Knock on wood)
We’re nervous about the long drive to California, but we’re trying to do it through the night so Bennett will be asleep for the majority of it. Wish us luck!! 🤞🏻
Overall this past week Bennett has been pretty content, which we attribute almost entirely to the CBD. We give him about 5 drops 2-3x/day which is a little higher than the recommended starting dose, but we just notice such a HUGE improvement as soon as we give him the drops that it’s difficult not to want to give him more. Of note this week is his new ability to get in and out of a sit on his own no problem. This is pretty life-changing. Now he can crawl to a toy, get in a sit to play with it, crawl to a new one when he’s bored, get into another sit, etc. he isn’t constantly upset and frustrated now and really only clings to us when he wants help walking or standing. He is definitely Italy needing to be swaddled every night still. He’s having a hard time self-regulating, even though he can nap during the day with no swaddle like a pro. Not sure what that’s about.
He seems to have leveled on the Zonisamide too because just yesterday Dave was remarking that he hasn’t been letting his tongue hang out or drooling nearly as much as last week. So weird that that seems to be a side effect of the Zonisamide, but he’s definitely keeping his tongue in his mouth more. And he’s also started babbling so much more than he ever has. He will babble to himself, try to copy our noises, babble when reading books, etc. It’s really great to hear!
This week he’s also showed more interest in other kids when he’s playing than he ever has. He’s interacting with them and genuinely smiling and responding to them when they try to play with him. It’s totally awesome.
We wouldn’t be surprised if he’s walking in the next month or so barring anything drastic happening to interrupt his progress, and we definitely plan to stay the course with the CBD as long as we keep seeing these improvements. I think it’s helping make the Pheno wean smoother as well, which is great. Most parents say it’s getting off the first 50% where they see increased seizures so with our next drop we’ll be there still with no seizures! (Knock on wood)
We’re nervous about the long drive to California, but we’re trying to do it through the night so Bennett will be asleep for the majority of it. Wish us luck!! 🤞🏻
Monday, December 11, 2017
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.
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
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
Saturday, December 9, 2017
12.9.17 Intro of CBD
So the last post ended with us celebrating that we were getting back onto the correct dose of Phenobarbital and it was helping Bennett's sleep. Haha...I should never say things like that out loud, ever again. On Monday (12/4) He was up for something like 4 hours in the middle of the night--I took the second shift when Dave needed to tap out. And then on Tuesday (12/5) He was up from about 12:30-6:45. I took him after about an hour I think, because Dave had a huge presentation the next morning at 8:30am. We spent about 3 hours driving the freeway--because of course he wasn't content just being in a still car...we had to be moving. And the rest of the night was spent with him crying and climbing all over me and the furniture until I finally just put him in the crib at 6:45 and told Dave that I quit, haha. I believe Dave swaddled him and he went down for like an hour or something ridiculous before he was up for the day.
The rest of the week followed suit, and Bennett was not much better during the days that he was during the nights. Lots of crying, overtiredness, restless, and frustration all over the place. Not a great appetite this week either. We were trying to go back to the Omeprazole (from the Prevacid), just in case that had something to do with the insomnia, but we didn't really notice a difference, and it's literally impossible to break those time release capsules into accurate doses every night for him, so now on Saturday we're back to just giving him the Prevacid tablets and hoping for the best.
But--I do think he's trying to say "mama"!!
In better news, we got our Charlotte's Web Everyday Plus CBD Oil in the mail yesterday (FINALLY). It's taken something like 2 weeks to get here! I've been doing all my research through the Realm of Caring website to figure out his dosing and all of the things we need to be aware of before starting him on it. They actually have a really solid organization and it's been really helpful getting started! So I knew we were supposed to give it 2 hours between administering CBD and his regular anti-epileptic meds (AED's), so last night we just put him to bed like normal without the CBD, but then he was wired (surprise, surprise...) so he actually ended up staying up another 2 hours just crawling all over upstairs and on top of us, so by the time 8:00pm rolled around we decided we would try the CBD and try to put him down again. He actually really liked the taste of the drops which was weird because it's just plain olive oil, but we aren't gonna look a gift horse in the mouth. So far, this kid will eat anything from a syringe like it's candy! So we then swaddled him and he actually calmed down within about 5 minutes!! Throughout the night he only woke up at 1:30 am for a bottle and didn't scream himself to sleep like he's done all week. He just cried mildly until he fell back asleep. Still not the easy up, bottle, down like we'd hope for, but better than hours and hours of screaming!
Then this morning I gave him his second dose (tiiiiiny dose--3 drops from the dropper) and all day he's been a different kid! He's mellow, happy to play independently for stretches at a time, smiley, babbling, and crawling (on his knees) and pulling himself up all over the place. Dave actually walked in to find he had pulled himself to a stand in his crib after his nap all by himself! And he's beginning to understand how to put himself in a sit from his army crawl position. This is huge because it would mean he could crawl to a toy he wants and actually sit himself up to be able to play with it like he wants to instead of getting upset when he reaches the toy and can't sit up by himself.
Then when Dave went to put him down tonight (he'd given him his second dose for the day around 3:30pm) he wasn't tired, but instead of screaming inconsolably, he actually PLAYED in the crib by himself for something like 25 minutes! Then Dave got him up and he was content and happy to just move around, and when Dave swaddled and put him back down at 7 (an hour earlier than this week's par), he went right to sleep!
Who knows if this has all been his first few doses of CBD or not, but it is supposed to have a pretty immediate effect and this is exactly the effect I've been hoping for--decreased fussiness overall, better sleep (oh and he took 2 solid good naps today too!), more cognitive and physical connections and developments, and overall just a more normal everyday experience for Bennett. I'm super hopeful this is the beginning of a really good thing for him and us, but obviously nervous too, because it seems like a lot of times we have this "honeymoon" period that eventually comes crashing down where he stops sleeping through the night again and starts struggling with everything. We'll just have to wait and see!
Oh, and the other thing we did this week was take family pictures! I seriously have zero pictures I would feel comfortable showing anyone of me and Bennett since all of this started over the summer because it coincided with me falling pregnant and that put me in NO state to be taking pictures for a few months...haha. So I'm finally feeling more normal and Bennett is smiling again (not as much as before--I still think the Zonegran makes him a bit of a zombie) so we were able to actually capture some good smiles and get some pictures of the 3 of us for a Christmas card :) That made me very happy because I live in constant fear that some med change or some seizure will take that smile away from us again and I want to make sure we have it somewhere we can always see it.
Oh, and just for the record, we decided to up his Zonegran dose because Dave and I both started noticing those nocturnal twitching/seizure-like movements again during the night and think that as the Pheno level has dropped, it make mean he's breaking through with nocturnal seizures or something. So we're now at a full 4 mL of Zonegran and I think he's kinda foggy, drooling more, sticking his tongue out a lot, but I'm hoping he'll level out soon.
The rest of the week followed suit, and Bennett was not much better during the days that he was during the nights. Lots of crying, overtiredness, restless, and frustration all over the place. Not a great appetite this week either. We were trying to go back to the Omeprazole (from the Prevacid), just in case that had something to do with the insomnia, but we didn't really notice a difference, and it's literally impossible to break those time release capsules into accurate doses every night for him, so now on Saturday we're back to just giving him the Prevacid tablets and hoping for the best.
But--I do think he's trying to say "mama"!!
In better news, we got our Charlotte's Web Everyday Plus CBD Oil in the mail yesterday (FINALLY). It's taken something like 2 weeks to get here! I've been doing all my research through the Realm of Caring website to figure out his dosing and all of the things we need to be aware of before starting him on it. They actually have a really solid organization and it's been really helpful getting started! So I knew we were supposed to give it 2 hours between administering CBD and his regular anti-epileptic meds (AED's), so last night we just put him to bed like normal without the CBD, but then he was wired (surprise, surprise...) so he actually ended up staying up another 2 hours just crawling all over upstairs and on top of us, so by the time 8:00pm rolled around we decided we would try the CBD and try to put him down again. He actually really liked the taste of the drops which was weird because it's just plain olive oil, but we aren't gonna look a gift horse in the mouth. So far, this kid will eat anything from a syringe like it's candy! So we then swaddled him and he actually calmed down within about 5 minutes!! Throughout the night he only woke up at 1:30 am for a bottle and didn't scream himself to sleep like he's done all week. He just cried mildly until he fell back asleep. Still not the easy up, bottle, down like we'd hope for, but better than hours and hours of screaming!
Then this morning I gave him his second dose (tiiiiiny dose--3 drops from the dropper) and all day he's been a different kid! He's mellow, happy to play independently for stretches at a time, smiley, babbling, and crawling (on his knees) and pulling himself up all over the place. Dave actually walked in to find he had pulled himself to a stand in his crib after his nap all by himself! And he's beginning to understand how to put himself in a sit from his army crawl position. This is huge because it would mean he could crawl to a toy he wants and actually sit himself up to be able to play with it like he wants to instead of getting upset when he reaches the toy and can't sit up by himself.
Then when Dave went to put him down tonight (he'd given him his second dose for the day around 3:30pm) he wasn't tired, but instead of screaming inconsolably, he actually PLAYED in the crib by himself for something like 25 minutes! Then Dave got him up and he was content and happy to just move around, and when Dave swaddled and put him back down at 7 (an hour earlier than this week's par), he went right to sleep!
Who knows if this has all been his first few doses of CBD or not, but it is supposed to have a pretty immediate effect and this is exactly the effect I've been hoping for--decreased fussiness overall, better sleep (oh and he took 2 solid good naps today too!), more cognitive and physical connections and developments, and overall just a more normal everyday experience for Bennett. I'm super hopeful this is the beginning of a really good thing for him and us, but obviously nervous too, because it seems like a lot of times we have this "honeymoon" period that eventually comes crashing down where he stops sleeping through the night again and starts struggling with everything. We'll just have to wait and see!
Oh, and the other thing we did this week was take family pictures! I seriously have zero pictures I would feel comfortable showing anyone of me and Bennett since all of this started over the summer because it coincided with me falling pregnant and that put me in NO state to be taking pictures for a few months...haha. So I'm finally feeling more normal and Bennett is smiling again (not as much as before--I still think the Zonegran makes him a bit of a zombie) so we were able to actually capture some good smiles and get some pictures of the 3 of us for a Christmas card :) That made me very happy because I live in constant fear that some med change or some seizure will take that smile away from us again and I want to make sure we have it somewhere we can always see it.
Oh, and just for the record, we decided to up his Zonegran dose because Dave and I both started noticing those nocturnal twitching/seizure-like movements again during the night and think that as the Pheno level has dropped, it make mean he's breaking through with nocturnal seizures or something. So we're now at a full 4 mL of Zonegran and I think he's kinda foggy, drooling more, sticking his tongue out a lot, but I'm hoping he'll level out soon.
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