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!