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!!

5/9/2019: ABA Evaluation and Seizure Link Monitoring System!

It's been something like 4 months since I last blogged and it's because things are going well!! Bennett's language has completely taken off with continued use of his talker ("Speak for Yourself" iPad app), and he's even saying full phrases like "head, shoulders, knees, and toes" at this point! His speech therapist is floored at his progress. Most people can't understand what he's saying AT ALL, but I mostly can, and it's a start. She says his clarity will get better with time, because as soon as they start stringing more words together apparently it gets harder to understand them.

2019 Easter Pics

We are still on 2.7-3 mL of Oxcarbazepine 2x/day and 3 mL of Cyproheptadine for appetite stimulation. His seizures are well-controlled. We will be 10 months seizure free in 2 weeks!! This feels so incredible to write. Almost 10 months since we've been in the ER in a post-seizure melt-down. We are so lucky and we try to never take our seizure freedom for granted because we know how difficult so many of the other SCN8A families have it with seizure frequency.

We had our official evaluation for our ABA (Applied Behavioral Analysis) services to start next week officially (FINALLY), and it was interesting because Bennett actually is doing pretty well! He's a little delayed, but in the last 3 months he's learned his colors, can repeat almost anything we say, responds to "no", says "please" and "thank you" regularly, has clear preferences for things, and can follow complicated requests. As she asked me what goals we had in mind we mostly focused on his eating and then increasing his social reciprocation with people when playing.

His eating. It is the bane of my existence. Seriously. He still basically only eats macaroni and cheese (but ONLY the Annie's brand of white cheddar shells), scrambled eggs, peanut butter, puffs, crunchies, and pediasure shakes. But 3 weeks ago he started asking for strawberries and he still asks for them daily!! He can't chew them with his back teeth, so we cut them into small pieces and he mashes them and mostly swallows them whole, but still--strawberries!!! He seems to actually pay attention to what Olivia's eating and every once in a while he'll try something new. We went from no new foods in over 6 months, to strawberries and willingness to try a few things in the last few weeks--so we can celebrate that!

Physically, he's also doing pretty well. He's not the most coordinated, and he still has core balance issues (can't really go down a big slide on his own), but his physical therapist is happy with his progress. We're basically just worried he's always going to be a little fatigued more easily than other kids. But he's walking, jumping with both feet off the ground, kicking balls, trying to run, etc.

Horse therapy to help core balance

I'm nervous to start our ABA therapy because it's going to be 3 hours a day, 4 days a week, and then the last day of the week will be our Kids On The Move therapists coming. Angie and Aprille (KOTM therapists) have given me the speech about being very clear with the ABA people about how to work with Bennett and what our specific goals are. They're really protective of him because they say he's one of their favorite little clients. He's just such a sponge and so bright. He picks things up in seconds--he just struggles with the more typical interactional subtleties and imaginative play. So I'm committed to helping the ABA people know how to help me with his feeding issues and also to use the talker with him as much as possible. Hopefully we like them!

Olivia's also doing great--she decided to walk this week and now she's walking all over the place! She's learning to sign with us and it's helping with her incessant yelling, haha. She's still a garbage disposal and will eat anything and everything as long as she's hungry. She's helping Bennett with his social interaction because he's forced to interact with her all day. Sometimes that results in some hitting and pushing (always followed with an immediate "Sorry, Olivia" and a pat on her head), but for the most part they like playing together. It's way fun to watch them be siblings!

We also got a new seizure monitoring system a few days ago! It's called the Seizure Link and it's a little white square that goes on the bicep, but it's cordless, and it alarms if it senses muscle rigidity for more than 5 seconds. We get a phone call and then it also beeps out loud. It's really amazing technology!! We're part of their early trials to try it out and it's not cheap ($500), but SO worth it to sleep soundly. Tonight will be the first night he has it on overnight and I'm already realizing there's been an underlying level of anxiety I have just gotten so used to about SUDEP, that I didn't even realize it was there anymore. I'll keep you updated on how it works for us. Bennett calls it "strong Bennett" because it's on his bicep, which is where taught him to flex and say "Strooooong!", haha.

So that's us! Nothing major to report--but that's the way we like it!! Stability, stability, stability!

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! 

1/1/19: Happy New Year!....and Continuing AAC.

It's January 1st! Crazy how quickly it feels like 2018 flew by. 2017 felt like the longest year of our lives, but here we are with a 2 year-old and an almost 1 year old! I've really appreciated the blogs I've found of the families who worked with augmentative and alternative communication with their kids as I've been figuring this all out with Bennett, so I wanted to document the journey here just in case it helps anyone in the future. And so that we remember the details when we look back.

We've been using the SFY (Speak For Yourself) iPad app for a little less than a week now, and I feel like I can safely say that Bennett 1) doesn't hate it, 2) understands that it's a form of communication, 3) enjoys pressing the buttons and hearing the different words, and 4) doesn't really know how to use it to tell us things we don't already know he's thinking, haha.

So I took to the internet to try and find tutorials and resources showing me how to begin teaching AAC, starting with the Nieder Family blog (who originally posted about SFY and have posted their own journey with their amazing daughter) and found a really amazing webinar series the Angelman Syndrome Foundation (I think?) put out a few years ago. It's basically 42 hour-long presentations by speech-language pathologists about how to start implementing AAC with your students (in our case, our child). It's geared toward professionals, but it's AWESOME for parents too! They also directed me to a few other great resources: PrAACtical AAC, AAC Intervention, and the AAC Girls Blog.

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I've gone through the first 4 webinar episodes from the Angelman education series and have already learned a ton. The biggest takeaways I want to emphasize and remember are:

1) MODEL. MODEL. MODEL.

Everyone says this, but I didn't really understand what they meant by it until the SLP went into detail in one of the episodes where she showed how to model with the device. Basically it just means that when we're playing, eating, watching TV, reading a book, out and about, etc., we need to be commenting on our world using the device just like we would comment on the world using our voice. The way she put it was "what goes in, comes out: verbal language in, verbal language out." But for our kids who need alternative communication "AAC in, AAC out." We can't expect "verbal language in, AAC out." We have to show Bennett that this is a legitimate way to communicate and that means using the system to show him what we're saying to him as much as humanly possible.

This is difficult--particularly with Olivia running around and trying to touch the buttons on the iPad when we're using it and playing--but I can already see his gears turning in his mind as he sees me use it more naturally. It's a total mindset shift, but one we have to make if we want this to work.

2) Get away from the NOUNS!! 80/20. They want 80% of the words on the device to be non-nouns. Meaning verbs, adjectives, pronouns, prepositions, etc. Only 20% should be nouns. They want to get AWAY from labeling things and just requesting things. "I want ____".

This was really mind-blowing to me because it made me realize that alllllll Bennett does right now is label and request! I mean, I think that's probably age-appropriate for a 2 year old, right? But they're saying that you can't use AAC for only nouns and then expect the rest of the language structure to fall in to place. If I'm using the word "and" in a sentence, I should press "AND" on the talker. If I'm using "now" I should press "NOW". You get the idea.

Before, we really only had a few of the "core vocabulary" words visible on the app because I didn't want to overwhelm him, but they're pretty emphatic about leaving as many of the core words visible as possible and trying to just use them as much as we use them in real verbal conversations with our kids. It makes sense to me, it's just another shift in mindset. But I like it!! I want Bennett to be able to make comments about the world around him, how he feels about things, what he thinks about, not just what he wants and needs.

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So those are the main things that I can remember right now, but they've already been helpful! Bennett is trying to say new sounds of words we don't really expect him to use like "and" and "to", and "what", just because I'm emphasizing them using the talker! It's awesome. I'm hoping I can keep this momentum up once real life starts again (we've all been on holiday break) so we can keep making progress. Thanks for reading! 

12/28/18: Speak For Yourself Communication App

A few days ago, someone posted on our SCN8A Facebook group about augmentative and alternative communication devices for our nonverbal kids. Most of our kids are nonverbal, and the ones who do have a few words also rely on sign language and different ways of communicating to be fully understood, since most of them struggle with expressive language. Bennett has great receptive language (meaning he understands most of what we are saying to him), but his expressive language is really low (meaning he can't tell us what he is thinking).

He does have a few signs he uses consistently and we get along alright with understanding most of what he's saying, but his vocab is really limited to what we already understand and assume he's saying. Just for the record, the words he has right now include: food, drink, water, shake, macaroni, Daniel Tiger, outside, swing, go, car, bye bye, love you, mom, dad, yah, no, uh-oh, help, want, please, thank you, and probably a few others I'm not remembering right now. We have to prompt him 95% of the time to use these with us, though, and the AAC (augmentative and alternative communication)  device is supposed to help him with initiating contact with us spontaneously.

I've thought about using an AAC device for a few months now, but I've been hesitant because Bennett does have a few words and sounds and I'm nervous to mess with his language development. After reading this post that someone shared, though, I finally felt like I'd found a good system that could help expand Bennett's vocabulary. I'm still nervous about whether I'm doing the right thing introducing this system to him, but I'm hopeful and excited about it!

It's called Speak For Yourself, and it's an iPad app you can download. We have an iPad mini we hardly ever use, so it wasn't a big deal to devote it solely to Bennett as his communication device. The app is amazing in a lot of ways, not least of which that it is ridiculously easy to customize and edit. It has the capacity to give Bennett 15,000+ word options, but we were able to start with literally just "eat" and "drink". I found pictures of his foods and drinks he's already familiar with and put them in there so he would know which buttons to press, and so far, he seems to be understanding the gist of it!

Here's his first meeting with the app (I can't get the video to load right now for some reason, so I'll try again later). By the end of the session he automatically knew to press "drink">"water" to get to water. And he knew where "eat" was to open up the menu to get to "peanut butter". He had some difficulty pressing the specific buttons correctly, but today (the second day of using it) he seems to be doing much better with his specificity. I'm amazed at how good he is at remembering where the words are! 

12/19/18: Official Autism Diagnosis.

Yesterday, we finally had our official Autism evaluation with Utah Behavior Services (a child psychologist) and very quickly received confirmation that Bennett does, in fact, have Autism Spectrum Disorder. It was an interesting experience to be in the room with the psychologist watching him test Bennett and seeing the deficiencies so clearly. I think we've just seen Bennett come such a long way that I forget how much he still doesn't do--like care if we're in the room or not, make eye contact, initiate engagement from us, smile easily, etc.

While it was difficult to watch him basically ignore the psychologist and me for an hour, despite repeated attempts to engage with him in play, it was also reassuring, in a way, because I have felt that he has struggled socially for a very long time and it was nice to have an expert validate that for me. It also helped me feel better about feeling like it takes so much work to engage Bennett and play with him because he actually requires a lot more work than most kids. It made me feel like a better mom, haha.

One of the first things the psych said to me when we walked in was that a lot of kids get an Autism diagnosis when they really shouldn't because it's more of just a language delay, a sensory processing issue, a general cognitive delay, etc. I think he was preparing me for not receiving a diagnosis despite the language issues. But within about 10 minutes he was quick to realize that I wasn't nearly as concerned about the language delay as the social impairment (as far as the reason we were there for the testing). As he watched Bennett playing in the room (before the official eval had even started), he was already pretty confident he would qualify for a diagnosis. The formal evaluation just further confirmed it.

One really nice thing that came out of the evaluation was that the psych was so profuse with his praise for Dave and I for how hard we've already worked with Bennett with early intervention. He was able to see that Bennett could perform a lot of socially appropriate behaviors because he had been "trained". These were things like pointing, signing, asking for help, looking at us when we called his name, sitting down when we asked him to, etc. Those things have taken months to achieve, and he could tell that Bennett didn't really understand why he needed to do them, but he did them anyway because we have worked so hard on them with him. He was really complimentary of our emotional engagement with Bennett's development already and said he was hopeful that we would continue to really help him a ton as he gets older.

So...what does this all mean? Basically, I wanted to make sure we had an official diagnosis (if he really did have autism, of course) because you qualify for additional services in the schools as well as different therapies insurance will be willing to cover better. He recommended ABA therapy, which was heavy.

ABA stands for Applied Behavior Analysis, and seems to be the gold standard for helping kids with autism develop more neurotypical social and adaptive behaviors. It's pretty similar to what we already do with Kids on the Move, but the difference is that it's 25-40 hours a week of in-home therapy with Bennett, where KOTM has been basically about an hour or two a week with different therapists. Obviously this is a massive life-change, and I'm a little overwhelmed about how to handle it.

Finishing my PhD is looking more and more impossible and I worry about Olivia getting the attention she needs, as well as Dave and I not cracking under all the stress. I know lots of families do this and people say it really helps, but I just feel nervous and I've never really understood how people do it, to be honest. I guess now I'll find out, right?

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As a side note: We are almost 5 months seizure free!! We've stayed at about 2.7-3.0 mL of Oxcarbazepine and it seems to be controlling things. The CBD oil has continue to help with his engagement and spaciness (although he's been spacing out more and more the last week or so), and we added and appetite med (Cyproheptadine), which helped a little with his eating in the beginning, but now might just be making him hangry while he's still not willing to eat anything besides macaroni and chocolate chip eggos, haha. Pediasure is life...

Here's a video of Bennett "reading" to Olivia...and saying "Balloon"! <3

We noticed massive improvements in his engagement with us when we started playing mellow classical music in the background at home a few weeks ago. It seems like it is much easier for him to make eye contact and stay focused with us than it used to be, which is awesome. Now if the music is off, he'll be harder to engage and we won't realize it until we remember we need to turn it on. It's kind of crazy how quickly it helps him, actually! 

As always, thanks for reading! 

9/20/18: General Bennett Update

Bennett's been doing pretty well the last few weeks since his last seizure.

Physical Development--He's pretty stable on his feet nowadays! He struggles on terrain like grass, woodchips, hills, etc. but he can manage it, it just takes a lot longer than most other kids who are 21 months old. He even kind of started running this week chasing us and letting us chase him! His giggle when he gets into a chase is just the best sound :). He still can't get the hang of staying upright when he tries to go down a slide, but we keep working on that core strength so hopefully that comes soon.

He learned how to swing in a big kid swing this week by himself! (With very close supervision, obviously, haha) That was a really really cool milestone to hit!!

Cognitive Development--His expressive language (what he can say) hasn't changed much in a few months. He still has some consistent signs and can verbalize a few sounds ("Daaaa"-mom and dad, "up!"-up, "baaaa"-bath, "uhlalala"-water and Olivia, "caaaaa"-car), but hasn't really picked up any new verbal words or sounds. He is trying to mimic our sounds all of a sudden, which is super fun. If we say "Can you say _____?" he'll actually try. His sounds aren't usually even close to ours, but he's pretty convinced he sounds exactly like us, haha! Maybe it's the beginning of getting a wider sound vocabulary and even some words? Hopefully! It would be nice to have other people be able to understand what he's asking for sometimes.

His sign language is about the same, but he has picked up a few new signs lately (macaroni, but I can't think of any others right now, haha). And he's just gotten very consistent with the ones he knows. He doesn't really use them spontaneously anymore to ask for what he needs. Very rarely he'll sign "help" if he can't reach or open something, but for the most part we have to prompt "do you want this? do you need help? Are you hungry?" At least he's able to confirm what he wants when we guess right though, haha, we'll take it!

So overall, his expressive language is soooort of improving? A tiny bit.

His receptive language has improved a lot though! He understands what we're saying now the majority of the time, which means he can actually respond to things we ask him to do. He'll actually bring us something now if we say "Bring it to me, I can help you!", which is a HUGE improvement. So even though he can't exactly communicate to us what he needs, at least he's able to understand more of what we're trying to communicate to him. We're thrilled with that!

Feeding Development--He still can't really chew with his back teeth, which means he swallows everything he eats whole, or he just spits it out. His diet has to mostly consist of pureed vegetables and fruits, yogurt, Gogurt (still his favorite), bread, Eggos, and other things that will dissolve in his mouth. I do think he's slowly getting the hang of chewing using his back teeth though. We've been working on just manually opening and closing his jaw to get him to understand what it feels like and yesterday he had 4 BITES of ground beef in his chili (he looooves chili, haha) which he actually CHEWED and SWALLOWED!! He was chewing the beans pretty well too! So maybe we're making some good progress there. It just feels like a glacial pace to me, haha. Luckily Olivia is also delayed so she's not in a high chair yet, or we'd have two babies in high chairs both basically eating the same foods!

Sensory Development--He still seems to need a TON of vestibular input on the day if we want him to be content and able to focus on anything inside for any extended period of time. Vestibular input is basically big movement, so for him that's mostly swinging or being thrown up and down, riding in a stroller for a while, being swung in a blanket between Dave and I, etc. And then baths always seem to provide a lot of the tactile input he needs as well. He's still sleeping perfectly though, so he doesn't seem to need deep pressure or anything to really settle down at night. He just needs about an hour and a half of reading in his crib quietly before he's ready to fall asleep, but we're not complaining :).

So overall, he's not exactly making strides in his development, but we're really proud of how hard he keeps working at his language and physical development even though it seems to be really difficult for him. It's definitely fun to be able to take him to the park and actually see him play with some things instead of just crawl around. Some of his favorite things right now are reading books, drawing on paper (and the walls, chairs, furniture, etc.), watching Daniel Tiger, exploring all of the drawers and cabinets, taking things in and out and in and out and in and out, haha, and playing with Olivia and seeing her giggle at him!