Bragging Time

We've had a great week, Lucas is feeling good and all smiles! So far, it appears the shunt is working. I thought I'd dedicate this update to bragging about all the cool new things he's doing now. He's showing more and more receptive language every day. I tried to count the words he knows, and I'm up to about 35 that he comprehends (and that doesn't include all the Spanish words he's learned from Mirna that I don't know)! He definitely recognizes the kids' names, and the kittycat--evident in the way he lights up when he hears the words. He signs "more" and "all done". He gives kisses, raspberries, waves bye-bye, and we're working on hugs (he can't quite get his arms into it yet, but he knows the word and leans his head in for the hug...so cute). He can help take his arms out of his shirt, and removes his socks when he's told. He's mimicking a lot, and this week he's stuck on the word "mama", saying it constantly. :-) Pretty good for a kid they said wouldn't have normal function and ever make it this far, huh?

We're working very hard on motor skills. For the first time this week, he held himself in all fours for about 2-3 minutes all by himself!! Yeah! Bran and I were so excited, I was yelling "grab the camera...grab the camera!" This is a very big step, it has been predicted by some that he'd never be mobile. He may still be a long way from crawling, but the fact that he's weight bearing on both arms (with the left arm not being very functional) is a very big deal! Our PT was very surprised and happy with his progress yesterday, she said his hips are finally loosening up and his torso is getting stronger. The high tone (tightness) in his hips and hamstrings are a major inhibitor to him being able to sit independently (although he's getting close), and especially for standing/walking. Right now he won't stand at all because the minute his feet hit the floor, the hamstrings involuntarily fire into a tightened position, making it impossible for him to stand. The only way to loosen tone in the legs, is to stand. But when your body won't let you do it, it makes this a very hard thing to overcome. We have to somehow break the pattern. Just like the only way to reduce the tight tone in his left arm is for him to use, and weight bear on the left arm (another reason it is very exciting that he stayed in that position for a couple minutes) .

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We are starting a new therapy next week that I couldn't be more excited about, called Anat Baniel. I found it through another preemie mom who's son had a Grade IV bleed, and has seen some incredible results. The Anat Baniel method is predominantly practiced on the west coast (with its headquarters in California), but there are a handful of practitioners in the DC area. I had appointments set up for him last week, but the therapist got sick, so we're rescheduled for next week. It is specifically practiced in children with brain injuries or CP, and has a unique movement approach to "teach" the brain to make new neural connections. Lucas not only has high muscle tone making movement challenging for him, but due to his injury, his brain cannot learn movement and achieve milestones the way a healthy child would. This therapy focuses on helping the brain develop the patterns in the order that it should be learning, rather than just focusing deficits in the various muscle groups. There is so much more to explain this specialized therapy, but I'll do that later after we've had his first few sessions. We will do a burst of 3-4 appointments within a period of few days, then take a break...then back for more if we see results. Our regular PT that treats him every week is also on board with us trying this method, so hopefully it will be a nice complement to her treatments. I feel good about this, there's just something in me that says this is going to really help him.

His eating skills have also improved this week, he is finally able to tolerate the texture of the little stars and eat an entire one. Like most preemies, he has some sensory issues and low oral skills. He's been receiving therapy for feeding too. We've been working on this for about three months, he would gag or try not to swallow. We started very small with 1/4, then 1/2, now he's eating them whole and starting to chew like an old pro. I told our therapist, he just needed to finally get a week of feeling good, and see what he's accomplished!

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I'm overdue for posting videos, here's a link to six recent ones... http://www.vimeo.com/album/24111

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I have to set the one below up with a story... As I said in a previous update, I taught Lucas to do raspberries on command, which was very cute as a new "trick" for a couple of weeks. The kids came Halloween weekend and loved getting him to do it... so three kids requesting constant raspberries for an entire day equals a little boy that thinks this is a really fun way to get attention! The following day, he was doing them constantly. We were at a party and as we'd be talking to people, he'd be spitting. Not so cute. So in an effort to "un-teach" the raspberry, the rule was that no one ask him to do it, and not to laugh at him when he did (the first thing he does is to look to see if you're laughing). Tough not to laugh though, its still pretty funny. So in the video called "Giggle Box", I tell Abby to let him give one for the camera. You can see what he does from there. Warning...you'll hear A LOT of coughing in these, for some reason this sound just cracks him up, and happens to be on several of these to get him to laugh.

"Giggles and Raspberries" Video:

All by myself!!

The Boys

Two Little Miracles - Lucas and Elle

(At the Halloween party - my friend Courtney and her daughter Elle,

also born at 25 weeks weighing 1 lb, 6 oz)

Working with Daddy