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!
