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!!

1/27/19: 6 Months Seizure Free!!

Well, we officially made it to 6 months seizure free. We were a week shy of it last time, so I was ridiculously nervous this week that we'd have a seizure and not hit the 6-month mark. He did do something weird during his nap in his crib two days ago where he had what looked like a "drop seizure", but our neurologist watched the recording and didn't 100% say it was a seizure (you can't know without an EEG anyway, really), so I'm not going to count it. But even if we did count it--we still made it 6 months tonic-clonic seizure free, which is amaaaazing!! 

We are SO happy to hit this milestone, and just hope we continue the streak! It feels kind of vulnerable knowing that we're in the longest seizure-free stretch of his life right now. It just means the next seizure we have will probably hit me really hard. They always do when it's been long enough that I'm comfortable leaving him alone for more than 2 minutes at a time. But I'm trying not to focus on the next seizure. I'm grateful for the last 6 months of basically no med changes, no seizures, and no massive regressions. 

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I wanted to give a general update again:

Physical Development--He's started to try to run (read: walk fast), but doesn't quite have the stability or strength yet. He tries to "benddddd and jump!", but only gets to his tiptoes. He can't leave the ground at all on his own. He still struggles on terrain like grass, woodchips, hills, snow, etc. He just doesn't have the balance to be able to walk effectively there. We've been working hard on walking up and down the stairs (instead of crawling), and just this last month he's started to grasp walking downstairs. Walking upstairs still feels a little impossible for him. He has SUCH a hard time not just crawling up, and I have a hard time helping him while also helping Olivia, so slow going on that front, haha. He face planted and flipped over himself a few weeks ago, but seems to have bounced back just fine! He actually likes going down by himself most of the time now.

Cognitive Development--His expressive language (what he can say) has changed a ton since we started using the talker ("Speak For Yourself" iPad app). He LOVES playing around on it and practicing the different words, and it seems to have unlocked something for him to where he realizes he can try new words any time he wants! He now says random things like "color", "sticker", "sissy", "please", "thank you", "blanket", "sad", "upstairs", "bed", etc. Still working on those core vocabulary words like pronouns, articles, prepositions, etc., but the other day he sat on Dave's lap crying and pressed "feel">"sad" and then hugged him. It was pretty amazing. And then the next day we were playing and he pressed "need">"Mr. Potato Head", because he needed help with Mr. Potato Head! That was really cool too! He's finally starting to put two-word phrases together a tiiiiiny it. 

His sign language is about the same. Still relying on us to prompt him for most communication (verbal, sign, or talker). Very rarely he'll sign "help" if he can't reach or open something, but for the most part we have to prompt "do you want this? do you need help? Are you hungry?". Still signing "Daniel Tiger" like his life depends on it every day, but we haven't used TV in like 3 weeks!! 

His receptive language has just continued to improve! He still understands most of what we're saying and he's a remarkably obedient child, haha. If I tell him we have to put the cars away before we pull the blocks out he'll stop dumping the blocks, go put the cars away one by one, and then return to the blocks. He understands and responds to "no" for some reason (angel child!), and we're not questioning it!

Feeding Development--He still can't really chew with his back teeth, which means he swallows everything he eats whole, or he just spits it out. His diet has to mostly consist of pureed vegetables and fruits, yogurt, Gogurt (still his favorite), bread, Eggos, and other things that will dissolve in his mouth. I do think he understands how to chew using his back teeth, he just sees no need for it. We're still working to get him to "take bites" and "chew chew chew!" every time he eats, but we probably still rely on about 2 Pediasures a day to keep getting calories in him. Our doctors aren't too worried, but meal time is becoming more and more stressful for me. Every time I use a Pediasure it feels like I failed him, which is a heavy burden to bear 3 times a day.  

Olivia's been in a high chair now for about 5 months I think (?) and she eats EVERYTHING. She's like a garbage disposal--it blows our minds!! It's been good because every once in a while Bennett will want to experiment with what she's eating, but he's kind of getting over the novelty of sissy eating next to him, haha. She eats normal food, and he sticks to his super limited diet. 

Sensory Development--His sensory needs haven't been too big of an issue lately (except feeding probably falls under sensory stuff). He still sleeps amazingly well, down by 7 pm at night (reads for about an hour before falling asleep), up around 7:30 am (reads for an hour before wanting to get up), gets overstimulated by too much going on around him, but has learned to self-regulate with a book and a quiet place--rather than needing to rely on Daniel Tiger. I'm thrilled about his newfound reading/regulation skill. We can sit him on the couch with a blanket and he can totally reset--it's awesome! He still does better if he gets some vestibular (movement) input, but so does Olivia. 

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So overall, other than his feeding, he seems to be slowly progressing in most of the developmental areas, and our therapists are thrilled with his progress. We have loved watching his language explode since introducing SFY 6 weeks ago, and I'm hoping we can keep it up and keep helping him get more and more familiar with it. He's super cuddly right now--he loves to just come sit on our laps or give us hugs in the middle of playing before he gets up and goes right back to what he was doing, haha. It melts our hearts. He also really loves Olivia right now. He likes to push her around the house in the walker and they just laugh and laugh so hard together. He's been coloring for hours every day the past two weeks, and he especially loves playing with stickers. We haven't used Daniel Tiger in a few weeks because we're working on focusing on open-ended toys for both Bennett and Olivia and have noticed an improvement in his ability to regulate his emotions! 

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!!

Day 7 of 0mg of Zonegran!!

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

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

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

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

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

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

3/23/18: First Physical Therapist Appointment!

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

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

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

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

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

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 ^^.

12.3.2017 Day 12 Pheno Wean and He Sleeps!!

So........it turns out it wasn't the Zonegran OR the Prevacid causing Bennett's crazy insomnia the last few days. Two nights ago Dave asked me somewhat sheepishly, "Wait...so with these new pills, is Bennett supposed to have one and a half? Or just one?" The answer was one and a half, and you can probably guess how much he'd been giving him (just one...). So Bennett had accidentally dropped to 15 mg/day of Phenobarbital, when he was supposed to be getting 22.5 mg/day per our wean schedule. As scary as that was, we were glad it wasn't the Zonegran or Prevacid that seemed to be the culprits. Once we had him back at the right level he was already sleeping better and acting more like himself--hallelujah. Poor Dave was dying from the lack of sleep and having to take care of me being sick. And thank goodness Bennett didn't have any break-through seizures or anything as a result of the mistake! So far we are still seizure-free almost 2 weeks into the wean.

Actually, in just the last couple of days Bennett's been making some great progress in his walking, crawling, and even babbling! He loves walking around in his little 4-wheeler walker, and he's able to push the VTech Sit n' Learn Walker across our carpet because it gives enough resistance to keep him going slow. He's also constantly trying to get up on his knees to get into a sit or a stand on his own from his army crawl, but for some reason he has such a hard time staying up on those knees. I honestly think he'll be walking before he figures out crawling correctly, haha.

Just the last day or two he's started really babbling a lot with us! He can only really articulate "baa baa!" but he walks around all day going "babababababa", haha. I think he is trying to say Mama or Dada, but he can only figure out the "b" sound right now. It's so fun to see him trying to communicate in other ways than just screaming or crying, haha. I really hope we hang on to and keep growing his language. This morning I caught him flipping through a book on his own just making sounds to himself like he was trying to "read" it. That was huge!!

Overall the last few days (since we leveled the Phenobarbital out) he's been really happy and explorative. It's been so fun. We're dreading the next dose drop (this Wednesday), but we're also excited to see what other connections he's able to make with less medicine coursing through his veins!

Also, I love having the pulse oximeter at home. We did stop using it those nights his sleep went crazy cuz it was just too much to handle all at once, but I was actually able to get him to sleep one night by watching which things I did soothed him (lowered his heart rate), and which things aroused him more (raised his heartrate). It was pretty cool! And we figured out how to get the Oxygen and Heartrate levels in the baby monitor view so we can just get a snap look at them if we want to in the middle of the night. I've noticed that now I'll wake up worried about him and then be able to go right back to sleep because I know if something was wrong, the monitor would have alarmed, whereas before, I'd toss and turn for a bit and watch him on the monitor long enough to be sure he's breathing and safe. I love the peace of mind that's come from the pulse ox for me.

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The other thing we had to do this week was take Bennett to get his blood levels checked. :( We're considering adding CBD oil to his med regimen (it's supposed to really help these kids with the cognitive and other side effects of the anti-epileptic drugs), but we want to make sure we watch his levels closely because it can interact with some of the traditional drug levels in his body and we want to make sure we know what's happening with all of those--especially as we wean off the Pheno. He was a champ during the blood draw, and the phlebotomist was awesome actually! I've been hacking up a lung all week, so Dave was the one holding Bennett during it all and by the time I walked in to check on him, the guy had used a mini-heat pack first on his little vein to draw it out and already tied the elastic around Bennett's arm (which usually induces severe screaming...) and Bennett was happy as a clam!

Obviously he wasn't so happy once the needle went in, but the phlebotomist was able to get the blood flowing and only had to stick him once which is nothing short of a miracle. Poor Bennett was just upset and not understanding why we were all just watching and talking to him instead of getting rid of the pain while we were waiting for the vial to fill, I'm sure, which was heartbreaking, but once we got back to the car and turned on his jam (still "Helpless" from Hamilton--has been from day 1, haha) he was just fine! We'll have to repeat those labs once we add the CBD so probably in about a month or so, which is rough, but man, if we can have that phlebotomist every time, bring it on! And Bennett was really so brave. He's such a champ to go through all this and keep bouncing back. These poor kids are so resilient it's really amazing. We're pretty proud of him. :)

Dave had to work from home on Thursday because
I couldn't function with this cold/flu thing.
Bennett was in heaven :P

We discovered his new favorite food! 

TOMATO SOUP!!! 

11.20.2017 Pronouncing Consonants!

Well, this week was rough with Bennett because of the adjustment to the Zonegran (we think). Somewhere around Friday or Saturday he finally started to wake up again and be pretty content most of the day. He started clapping, stopped drooling so much, didn't seem as tired, and on Saturday he actually started trying to imitate us saying "Mooooooo!"! This was HUGE because he has never been able to manage consonants before!

At this age they expect him to be able to at least give a few "b"s and "mmm"s, but he's always only been able to say "aaaahhh". I think he's been trying to mimic "MaMa", but he just couldn't get his mouth to close for the M. So anyway, on Saturday he did it! And he seems to be working really hard at it too. During the days he has been so much happier and more content, but during the nights, his sleep has been cray. He'll go down for sleep, but usually wake up again within 2 hours just totally inconsolable. One night we just kept feeding him so much that he projectile vomited all over Dave and the nursery. So we decided to not rush to the bottle from now on to comfort him. But unfortunately, that had us back in the swaddle...

We were supposed to up his meds one last time yesterday to a full 4 mL, but we decided he seemed to be finally leveling out at the 3 mL dose that we wanted to give him a little longer at this level before changing it on him again. Plus I wanted to ask Dr. Morita if 3.5 mL might actually be a sufficient dose for him, rather than the full 4. We'd love to keep him on as little medicine as possible, obviously.

Yesterday (Sunday, Nov. 21) was the first day since we've officially gotten his SCN8A diagnosis that someone asked us "How's he doing? Is he still having seizures?". It was a really strange moment for me. I didn't really know how to answer her. Like, yes of course he's still having seizures...he isn't going to grow out of them. But no, he hasn't had one in 3 weeks...yet we fully expect him to continue having seizures unless he's the ONE child with an SCN8A mutation who happens to grow out of them. I think I just said, "Well, we actually got an official diagnosis for him last week and he has a seizure syndrome that means he won't really ever grow out of them, but we've had good control the last few weeks and really seen him make some strides in his development."

It was just hard for me to feel like--what am I supposed to say when people ask? It's not like I can say something like he has "Down-syndrome" or "Autism" or any other spectrum-like disease that people are familiar with. It's a full 5 minute explanation that I'm pretty sure people don't genuinely want to hear. Simply because it's painful to look at sweet Bennett and hear about how normal he ISN'T and how he could be totally fine today, and very not okay tomorrow--that we just don't know. People want to hear that we've found the magic bullet and he's never going to seize again and everything's going to be fine. But guess what? Bullets don't fix things. And there is no "magic cure" for Bennett--at least not right now. I described it to Dave as feeling "separate". I said, "When she asked us that I just felt so palpably 'separate'." Isolated or lonely aren't the right emotions, I just feel like we are living this entirely separate parenting experience with our son, and literally no one around us will ever know what it feels like. They have no idea why I come across as a helicopter parent when he's playing in between the rows of chairs at church. Because they don't understand why a bonk on his head is terrifying to me. And why should they? I wouldn't wish that on anyone, honestly. I would give anything to be able to watch Bennett bonk his head and just laugh and reassure him that he's fine like other moms do. But I can't do it when I myself am worried it could send him into his next seizure. I don't want other parents to understand that line of thinking. I really don't. But then where does that leave us? It leaves us in our own separate space. I guess it's the "Parents of an SCN8A Cute Syndrome Mutant" space. And I truly don't want more people to join us there...it's a scary space to live in.

For example...

Last night I was looking up a side effect of Zonegran on the SCN8A Facebook page to see if I could find any other parents' experiences with their kids who were on it at some point, and I was so caught off guard when I came across an old post written by a father of a 10 month old who had been hospitalized for 4 days at this point. He had written the post begging other parents to reassure him that even though he had completely lost his daughter in the last 4 days, that other parents had seen their kids come back to them after such a horrific seizure sent them into a coma and took away their ability to make eye contact, communicate, move independently, smile, laugh, hold their heads up, etc. I was shocked because all of the comments were parents posting about that first time their child "lost  everything" in the hospital after a status seizure. They ranged from being 6 months old to 5 or 7 years old and usually had developed typically up until this point with just minor seizures here and there until they landed in the hospital and suddenly regressed back to being an infant developmentally.

I just sat on the bed and cried. I actually told Dave I thought I was about to have a panic attack. I didn't feel like I could get a full breath. He just held me and reassured me that that may be something we have to deal with, but we'll deal with it on that day, not tonight. Tonight we were just going to deal with how to get him to sleep. I joked back and said, "I'm pretty sure you mean for the rest of our lives we're going to deal with how to get him to sleep, haha." I calmed down and didn't have a panic attack thankfully--I just realized that I have been searching all of the positive stories of recovery and hope for the last two weeks and purposefully avoiding the stories of pain and heartache because part of me is too scared to acknowledge the reality that Bennett could very well end up in the hospital like these kids and we could lose his smile and laugh again. All his progress he's making to take steps on his own. His consonants he just started to pronounce. His ability to eat solid foods. It could be taken from us in an instant if the wrong set of circumstances just happen to line up and we're unable to intervene quickly enough. It felt like too much to bear last night. And honestly, it still is. The only thing I can do is just take videos and pictures of him and hope they're enough if we ever need to rely on them in the future. Thank goodness for iPhones, right?

10.12.17 Meeting Chantel

Today we met Chantel from Kids on the Move, who will be working with us from here on out on meeting our goals and monitoring Bennett's progress as we work on his milestones and basic skills. She was great and Bennett took to her right away. He even gave her a few smiles! She was surprised he was doing as well as he is right now based on his assessment results. I explained that he's improved a LOT since we went off the Keppra and she took that as a good sign that maybe part of this has just been struggling with the medication side effects.

She took about an hour with us to ask me what we wanted to prioritize working on and what our goals were going to be. We decided that we want to achieve:
   - 2 words by 18 months (I think) that he knows the meaning to
   - Able to follow 1 simple direction like "pick up the ball" or "come to Mama".
   - Able to mimic a few gestures like a wave or blowing kisses.
   - Crawling perfectly.
   - Able to get in and out of sitting on his own and safely.
   - Have him evaluated by a Physical Therapist and a Feeding Specialist soon to make sure there are no physical issues we're dealing with.
   - Eventually work with a speech therapist, but not until we have a little more progress with his language skills--mostly understanding what we're saying.

We are probably going to attend their infant massage class in a few weeks where I can learn how to do it with Bennett, which is great, because I've tried infant massage with him before and he always seems to hate it. It would be nice to learn what kind of touch he enjoys to be able to use it as a soothing mechanism.

Overall, it was great to meet Chantel and she showed us a bunch of things we can try with Bennett for the next two weeks for his gross motor and language skills. Mostly, we just need to force Bennett to use his muscles to sit up, lie down, use his knees to pull to standing (instead of just lifting him), and some exercises to strengthen his core while he keeps his head up so he can get his belly off the floor when he crawls. Bennett seemed pretty exhausted after about 30 minutes of exercises, and he didn't enjoy it, so it's gonna turn playtime into more of a battle every day--and more proactive engagement from me, but I'm trying hard to commit to it! I want to help him as much as we can right now, and he seems to regress when we're not actively working on things, so I don't want that to happen. Hopefully we start to see some progress with the exercises.