One Year Ago...

With each passing day, I didn't lose hope. I fought to have more. --Amy Tan

It was one year ago today, after 156 days in the NICU, we brought Lucas home. August 30 seems like more of a special day than his birthday to me, with memories of excitement and pure joy. As I went through some of our old videos to create the one that is linked here, it brought it all back as if it was yesterday… it was surreal and is indescribable to explain what it felt like to go get him that day, and to stare at him finally sitting in our living room. It will always be a day to celebrate for us. Check out the video of his day of discharge, it is something I’ve wanted to put together for a long time. Homecoming Video

This year on August 30, we spent the weekend at the beach in Charleston, SC with Bran’s family. We rented a very cool beach house with Bran’s parents, Seth and Mary Ann, and spent time with Mary Ann’s family (thanks Mary Ann for arranging all of it)! It was a lot of fun to get away with everyone and relax a little on the beach. This was Lucas’ first trip to the beach. Not sure if he was a fan of the water, out of about 25 pictures, I don't think there is a single smile... but no doubt next year will be more fun for him! We celebrated Madalyn turning five (along with Seth's and Saundra's which are the same day in August). Madalyn's little brother, Landon, is due any day, she was a very good little babysitter with Lucas! Bran and I are so excited that Lucas will have a cousin his age to grow up with!

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I have to say that we’ve had a very exciting week, it is as if Lucas turned a corner and we've seen a lot of new “firsts”. Following the clapping, he’s now clearly making the “ba-ba” and "da-da" sound, and is working on “ma-ma”. This is something I am asked every other week by his vision teacher if he is saying yet, and I always have to say "no, not yet" (she also helps with language development exercises). Its so cute, he started a couple days ago, and now it is constant. This morning I woke up to his chattering in the crib, “u-bab-bab-bab-bab” as he was practicing this new fun sound. At the risk of sounding repetitive… these little steps are VERY big! I can't wait to see our previously negative neurologist in December, and surprise her again with all the things he's doing that she didn't think he would! He also rolled back to belly for the first time unassisted this week, and he drops a toy immediately on cue to the words "give me" EVERY single time (the kids get a kick out of this one, asking him to do it over and over again). We've been working on that one for a few months, and now he's doing it without any physical cues. He is also starting to look for a toy when he drops it (he would only feel for it before this past week--vision and motor were not connecting). He’s also learned to shake his head no on verbal cue when I say "no, no, no" (as he laughs). I know what you’re thinking, why the heck would I want to teach him that?! Can’t help it, he started shaking his head when he doesn't want to anymore to eat, and its just so cute now to see him do it on command and understand what I’m saying... AND that he is seeing me do it and repeating it! I’m sure it won’t be so cute one day, but right now it is melts me when he looks at me with a big grin and shakes his head to mimick "no-no-no!"

Some of this progress is his brain developing, but I really feel like we’ve made a big jump lately because his vision is getting so much better. His hand-eye coordination is improving every day (something that has been very delayed, so he’s just now trying to get the hang of it). There’s nothing more rewarding now than watching him try to grab whatever appears in front of him that we might be holding… like a menu, food, a paper towel, or whatever seems enticing to him in our hands. A month ago, he could care less about what was in front of him. His vision teacher told me this week that her favorite day is coming to see Lucas, that no matter what kind of day/week she is having, he always makes her feel better… because watching his great progress, but also because of his pleasant, sweet nature, and constant smiling. He seems to have that effect on people.

So cognitively and socially, he’s doing well, we just need to work harder on catching up his motor skills. We got another positioning chair this week from PT, I really like this one, he has to work a little harder to sit up which will strengthen his torso, but he also sits at a great height with a tray to really see what he’s doing. He looks like a little student, you'll see some pics of it with a new set I'm about ready to post from last week.

What a great day of happy memories! This weekend has been a reminder of how lucky we are and grateful for the year we've had with him, and for all the little miracles along the way.

Last Year: Homecoming Day - 8.30.07

This year - 8.30.08

With Uncle Seth

All tuckered out (with GranDan)

Lucas and Madalyn

The Birthday Crew

Cutie Pie

We're back from a week of vacation, and had a great time at Josh and Kami's wedding. It was a beautiful wedding and Lucas was absolutely adorable in his little tuxedo!

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We tried to time his naps so he wouldn't be tired during the ceremony (which was right in the middle of when he typically naps)... but of course, my plan didn't exactly work. He was so tired by the time I put him in the wagon, he kind of just slumped over while the little boys pulled him. It was hard to see his face, but he still looked very cute! I could hear lots of "awh's" as they pulled him.

It was nice to see a lot of old friends and introduce Lucas to those that had followed him last year. A few people came up to me saying, "I have to meet Baby Lucas! I've read so much about him." I was proud to have him there and looking so "grown up!" The kids also had a blast... this was the first time they'd ever been to a wedding, Nicholas insisted on wearing a suit and tie (believe it or not), and the girls had a ton of fun dancing all night. Abby (7 years old) danced with a boy for the first time, one of the ring bearers that pulled Lucas asked her to dance (soooo cute)! And she didn't stop there... she was proud to tell everyone the next day that "I danced with seven boys!"

The week at the lake was awesome, 10 adults & 5 kids in a very cool house on Lake Norris. We spent every day on the water... boating, skiing, tubing, wave runners, swimming, etc. No cell phone service or Internet access... very different for us! Everyone had a lot of fun, especially Nicholas, Abby & Anna. Anna cried when we left, mostly because she said was going to miss Kami, who she fell totally in love with. Kami and Josh are both elementary teachers, and are incredible with kids, so it was no surprise that they had two little followers all week. We were asked several times on our drive home if we could turn around and go back. It was great. Thank you Dad & Rose for doing that for all of us! Can't wait til next year!

Not much new to report on Lucas, everything is good. And after five weeks, he's finally healthy again. Other than being thrown completely off his schedule (as he felt naps were for the weak), Lucas was flexible and adaptable with everyone around. Kami asked me later in the week, "does he ever cry?" Nope. He is truly always happy!

He started something new last week -- he's now clapping with both hands open when I say "clap clap!" This is big for us for two reasons... he's never really opened his left hand to clap or hit anything. I've been working with him for several weeks to force it open to clap with both hands. I feel like I've said it a million times, with the only response from him being a smile. So the other day, Lucas was sitting in bed with us after just finishing his bottle, when I said "clap clap", I wasn't expecting anything when he started doing it! Bran and I looked at each other, like, did he just do that? So I said it again, just to make sure it wasn't an accident...and he did it again, and again, and again (and of course, with a big ol' grin). This may sound silly, but I cried, I was so proud! This also means he's showing more signs of language reception!! This is huge! All steps in the right direction!

Last year, when we were going through the most difficult days with Lucas after we learned of the extent of his brain bleed, events like this make me think back to some impactful advice that was passed on to me from a therapist when we were struggling with what this all meant. She said, "you're going to have to adjust your expectations for him, and the future... you've already heard all the worst-case scenarios about the future from doctors, but you truly don't know what the future holds for him... so you need to bring everything to baseline, to zero, and expect nothing... because then when he does something, you are going to be surprised and just that much more amazed." This is not to be confused with not believing in him. Believing and expecting are two different things... I thoroughly believe in him more than I've ever believed in anything in my life, but I try not to expect anything. That is why I write about things like rolling over and hand clapping as a big deal after what we've been told. There's no way to even describe this feeling. What some people would consider small steps, I don't, as I know that I am witnessing nothing short of a miracle.

Here's a few good pictures... there's a lot more that I'm working on getting posted.

Waiting with Uncle Bryan

Showtime!

With Uncle Josh

Great picture of all the kids

With Dad & Nicholas

Crashed out - he didn't quite make it through to the pictures!

Anna stealing a few kisses

Josh & Kami and my family

Us

Two handsome fellows
I know this is Lucas' site, but I had to throw this video in here because its so darn cute...

We're Rolling!

Lucas is finally rolling over by himself! ...over, and over, and over! This may sound like a small thing, but not to us. After MONTHS of therapy and exercises and getting pretty discouraged that he wasn't progressing much in the motor skill area (and after a pep talk from our OT a couple weeks ago), he's finally there! Its just from belly to back, but that's ok. He's definitely strong enough to flip over the other direction, but he's still not a fan of being on his belly (mostly due to his compromised eyesight). But we're continuing to work on his belly and pushing up, because he needs to strengthen his upper back more than anything... Its a little trickier now though since he knows how to get off of his belly in two seconds! :-)

We are starting to learn how weak preemies really are--not just in the beginning, but this can last for a long time through developmental stages. Our PT explained it to me differently a few weeks ago that at 34 weeks, a baby gets into the tight fetal position which develops many of the muscles in the back, shoulder, torso. Any baby born before that misses out on this proper muscle development... and the earlier the baby is born, the less muscle and tone they have to work with. Then add that they are removed from the womb to finish out their gestation lying flat on their backs while in the NICU. The other challenge is as a result of weak muscles and lack of use, the muscles become very, very tight.

The therapists decided to step up his therapy in September and are increasing his PT and OT appointments to every week, so now he'll have three appointments a week (including vision). Although he's progressing, they feel it is not happening fast enough. He's 16 months now (12.5 corrected) and they feel he should be further along. They were thrilled to see his new trick in today's appointment though!! I've never seen Gabrielle and Melody so excited to see him roll over and a few other steps forward that he showed off.

I know we'll get there, we just need to work a little harder. In addition to his therapy appointments, I've gotten much more disciplined with doing stretches and exercises twice a day. Its tough sometimes to force him to work and get into positions when he's not happy and whimpers or cries. But unfortunately it is necessary. We are also starting "isolation therapy," where we have to restrain his right arm to force him to use his left. Another thing I hate to do, but a necessary thing. He can pass toys back and forth from hand to hand, but the left is so much weaker. And OT has noticed that when he uses the left, it is always with the right. He has trouble using it independently. During his appointment this week when restrained, after many attempts, he finally grabbed his paci and put it into his mouth! We all cheered!

Some more progress... he's starting to put weight on his arms with some help from us holding him up (and just so darn cute when he does, I might add)! He's also very close to sitting up but is having trouble due to the tightness in his legs and hips. If he could just rest his knees on the ground while in the triangle position, he'd be able to balance enough to sit, but they are so tight his knees don't come anywhere near the floor. So, it makes it even harder to balance, when all you really have is your bottom and no stabilization. Our PT is really working on this and exercises to strengthen his torso. He's come such a long way in just a few weeks... we'll get there, I have no doubt!

A quick update on his health... 3 1/2 weeks and counting. We did kick the virus after a week, but now we're now fighting a pretty bad cold. Week two he was coughing a lot and we were back on increased nebulizer treatments, and now in week three it has moved into his nose and he can barely breathe. Poor guy, it is taking so long to get back to normal.

We're heading to Ohio tomorrow for my brother's wedding (Josh & Kami)... Lucas is the ring-bearer! He's going to be pulled in a wagon by Kami's 6-year old twin nephews. He'll be wearing the cutest little tuxedo in the world! I'm sure there will be lots of pictures! Then we're off to a week on the lake with the entire family. We are looking forward to a great week!

Here's a few recent pictures...

Look at me!

Little Angel