Surgery Again

I'm sad to report that we are back at Children's today for surgery this afternoon. I've been suspicious for more than a week that something didn't look right with his eye, and every day it got a little bit worse. I just had this feeling that I couldn't shake all week that something wasn't right, I kept telling Bran that although he seemed happy most of the time, he just wasn't himself. Yesterday he started showing more symptoms of malfunction and Bran took him to the ER first thing this morning. I had a meeting I couldn't change today, so unfortunately, had to miss being there. Dr. Yaun is now going to "Plan B" that I talked about in the last surgery... the new catheter appears to be working, but there is, in fact, walled off areas in the ventricle created from scar tissue (from his bout with meningitis). She is going to go in through the top of his head again with an endoscope and try to break up the tissue so the ventricles can talk to each other again. This just has to work this time.

On a positive note, his new therapy this weekend was awesome. We are so excited and are already seeing some subtle changes in him. Everything that she is doing and this whole method just makes sense. I feel like I hang on her every word when she explains things to us, because it is all so interesting. I read in mother's testimonial for the Anat Baniel method that she gave birth to her son, but Anat gave him life. That's kind of how we feel... we are putting a lot of faith and trust in her to help him, and there's something about her that I know is going to work. She also is so positive, and said he is going to do so much, we just have to teach him another way. Its a far cry from the OT we had to fire a few weeks ago who was already talking about immobility, leg braces, and Botox shots in his legs to help with his high tone. Carla (the new Anat Baniel theraist) is so far from that and said she sees so much potential in him. And she's the first person to give him some slack for all that he's been through and not stressing how much he is not doing. She said it is just un-tapped and his brain needs help wiring. Now our challenge is we have to take a few steps back to try to "un-do" the bad habits he's gotten into the last year with improper therapy that are actually inhibiting his ability to move forward. I have SO much more to talk about with this, but no time to explain now. Lucas just went into surgery a few minutes ago and I stopped at home on my way back from my meeting to grab a few things and thought I'd let everyone know what was happening. Have to run so I can be there when he wakes up.

I don't know if they help sometimes, but your prayers are certainly still welcomed and needed.

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) .

.

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!

.

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

.

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

Cautiously Optimistic

Writing a quick note... so far-so good! Lucas had a pretty good week, all things considered. We were able to wean him off medication the past couple days and the crying has diminished. I will say that this time around has been a lot better for him for some reason. Go figure... this was the one that was the worst going in and the most invasive (post-NICU) and he seems to have bounced back more quickly. The only thing that was the same, was his crying at night... I don't think it is pain, I think he gets scared. It happened the last two surgeries, he just gets really needy for about a week and if he wakes up at all after laying him in his crib he will cry. He doesn't like to be left alone. The first couple nights, he woke up several times through the night. He's become quite needy for Mommy, which I would expect. Last night we were cry-free and the first night that he didn't wake up!

I wish I could say everything is great and that this will be the last time, but we remain very on edge. I don't think we will rest until we know after many weeks that it is working. We are supposed to go in three weeks for a follow-up CT scan. Every time his eye drops a little, I'm worried it is the pressure again. I just can't shake the feeling that this one is going to fail too. His eye still drops sometimes, and I don't know if it is a sign of pressure building like before, or if it is just the shunt needing more time to get rid of all the extra fluid and equalize the pressure. He needs this to be the last time! He needs it for his weight gain, and his overall motor skill development. We've taken steps backwards in both these areas from this last two months being sick.

.

Since he was feeling pretty good by the end of the week, we were able to get Lucas out trick-or-treating on Friday! The kids were all very excited to see him dressed up and go with him for the first time. Abby wanted to be a Momma Bear when she learned of Lucas' costume. So cute. Unfortunately, it was a very short event because the kids didn't get to our house til after 8 pm, and once we got everybody dressed, trick or treat was basically over and there weren't any other kids out. Luckily a some porch lights were still on and they got to hit some houses. Lucas also goes to bed by seven, so he wasnt in the most festive mood as we were wheeling him around the neighborhood that late dressed in a bulky costume! Bran always gets the kids at 6 on Fridays, but the kids' mother withheld them without Bran's agreement so that she could take them trick or treating, even though she knew the kids had plans with their Dad & Lucas. He was there to pick them up at 6 pm, but she left with them, and wouldn't answer or return any calls. He had to wait over an hour for them to return. Ugh, it never ends. As if we don't have enough chaos, and it only hurts the kids. They said many times how they hated that the night was so short.

Anyway, we made the best of it. Here's some costume pictures!

Little Grizzly

Paws

The whole clan

Momma Bear & Baby Bear

Kisses from Mama Bear

Gran & GranDan came to see the kids off