All-in-all, Lively is perhaps doing better than his doctors and therapists thought he would. He is making progress in some areas (mostly gross motor) but his progress is less perceptible in others (speech). Here are some of the milestones for a "normal" 18 month old (Lively will be 19 months in a week). I have highlighted the ones he has met:
Fine Motor
- builds tower of three small blocks
- puts four rings on stick
- places five pegs in pegboard
- turns pages two or three at a time
- scribbles
- turns knobs
- throws small ball
- paints with whole arm movement, shifts hands, makes strokes
- uses a spoon and cup
- walks alone
- walks backwards
- picks up toys from floor without falling
- pulls toys, pushes toys
- seats self in child size chair
- walks up and down stairs with hand held
- moves to music
- Has vocabulary of 5-20 words
- Vocabulary made up chiefly of nouns
- Some echolalia (repeating a word or phrase over and over)
- Is able to follow simple commands
- Recognition of pictures of familiar persons, objects
- Early 2-word combinations of words emerge
- Needs are requested verbally such as "more","up"
- recognizes self in mirror or picture
- refers to self by name
- plays by self; initiates own play
- imitates adult behaviors in play
- helps put things away
- points to some body parts
- uses familiar objects correctly (cup, key, phone, shoe, etc.)
- recognizes pictures of familiar objects or people
- tries to figure out how things work
I'm making a point of putting these things in writing so that I can track them myself, and also so those of you who know Lively somewhat can understand everything we're experiencing. In a lot of ways Lively looks like a pretty healthy, normal kid. He's moving around and is close to walking (although not walking independently). But behind the scenes, there are a lot of things he isn't doing.
I just don't know what to make of this. Lively's teacher (he has a special ed teacher through Early On) told me yesterday that most kids who are behind will fall further and further behind. They start out behind and their progress is slower than normal, so the gap between their performance and "normal" continues to increase. That did not sound like good news to me. I suppose the purpose of all this intervention is to narrow the gap as much as possible.
Lively, however, is becoming therapy-resistant. When I take him to the preschool for his speech and physical therapies (also through Early On) he has a tantrum that lasts almost the whole time we're there. I'm not sure that he's getting anything out of these therapies anymore.
Lively also becomes more and more frustrated with his inability to communicate, and lashes out, frequently hitting me in the face. He still cannot point to something he wants. He imitates more, but really only says Dada, and less frequently, Mama. He signs "more" when he's eating, and a few times has signed "book" when we are reading before bed, but that's about it. He can't show me where his nose is. He doesn't reliably "go get the ball." He doesn't try to say "Annie."
And we're still dealing with seizures. I think he is not having infantile spasms now, but he continues to do his eye-jerking thing, usually when he is really tired or right before his Keppra is due. Thankfully, I don't think we're dealing with seizures like we were one year ago today, and we're finished with the horrendous, $150 K course of ACTH. But is it too much to wish for no seizures at all?
Lively is eating more, and probably getting a little more than half his calories from food now. He still cannot drink due to aspiration, but at least he is tolerating some food by mouth. When I compare him to 6 or 8 months ago, we've really come a long way food-wise. But we're still g-tube dependent, and that's unlikely to change in the foreseeable future.
Here's a picture of Lively and Annie sledding a few weeks ago. Lively tried to be brave. Annie loved every minute of it and would have stayed out 3 more hours if we'd let her.
