Tuesday, February 19, 2013

Millie update

We had a visit with Millie's neurologist after we returned from Disney.

Overall, Amelia (who turns 20 months old on Friday) is doing really well.

In addition to regularly saying dada and mama, she is tossing out new words fairly regularly. Or at least saying approximations of those words, such as "hi kitty" (more like "I it-tee"), "Elmo" "(emmo), "TV" ("eev-a"), "num-num" ("mm-mm"), "all done" ("aaah-umm") and others.

We might only hear them once or twice, but she is making progress, trying to communicate, which is great!

She also is working with us to learn to dress herself, putting an arm through a sleeve or presenting her feet for socks and shoes. It's super sweet. And she's so very proud of herself. (As we are of her. Always.)

She continues to work toward building confidence in standing and moving around vertically. She can stand on her own (without holding anything) - we've seen her do it - but as soon as she realizes she isn't holding on to something, she panics.

We've been trying to encourage her to walk, either through finger-walking or on her own. But she kind of just falls forward and expects you to catch her. She can walk while holding onto us - she does it occasionally - but she doesn't trust herself enough.

NEWS: Last night, Millie crawled up the stairs from the basement. All on her own. This is rather big. She usually will crawl up two steps and then freak out because she's too far from the floor. But Lola was encouraging her from a few steps up and I was all the way at the top in the kitchen.

Ray was behind her, ready to move if she slipped. Which she did of course. About halfway up. She stepped on her too-long pants leg and slipped, falling back one step. She caught herself before Ray had to actually intervene. Afterward, she whined and tried like mad to get Ray to pick her and comfort her.

But we continued to encourage her to keep coming.

And eventually she did.  

All the way up to me.

It was awesome.

Lola was so excited for her, "I didn't know 'Milia could do that Mommy!"

Anyhow, the focus of her neurologist appointment was to talk about her most recent ER visit (prompted by more seizure activity) and to discuss some increasingly perplexing behaviors that I'll call episodes.

I've noticed occasionally that Millie goes blank. She just ... disappears ... as she gazes off for a while, not really blinking.

It doesn't last long at all. At most maybe 45 seconds.

Because of they're so short and infrequent, I kind of half-wonder if I imagine them. But Ray admitted, too, that he's seen familiar episodes on occasion as well.

So we talked a lot of about them, too, with her neurologist.

We love our neurologist. We do. She listens to us. At this appointment, she listened for about 15-20 minutes as Ray and I babbled on about Millie's latest quirks and our concerns, what we've noticed.

The neurologist also is interested enough, based on the very little information available about what Millie has, to want to learn more. The more we know - such as the type and frequency of seizures - will help her determine the amount and type of medication that will help her best.

So. We move forward. In March, Amelia will undergo several tests, including a 48-hour EEG, another swallow study and another sedated MRI. We also will have our first consultation with the geneticist.

Should be a rather tough few days, but we'll all get through it.

The more information we have, the better...
- Bethany :)

1 comment:

Anonymous said...

She is making great progress! So proud of how strong all of you are. Love you so much. Mom