Summer Pictures and a New Stisher

I'm overdue for an update! We are all doing well, and Lucas remains in good health, in spite of another cold for the past two weeks. I can't believe that summer is already over, but we had a great one! Boy, what a difference a year can make from last summer! We actually did things and went places this year! Below are a few of my favorite summer photos that were not included in previous postings. These are just a few of the MANY! I'm working on getting the albums done and posted for the last couple months (as usual, I'm behind)!
.
A few new things in the past three weeks... Lucas is continuing to practice his new sounds of "dada" and the "b" sound. He doesn't always do it on command, its usually when we're not paying attention and he'll throw out a "dada", then turn and look at us with a big smile to see if we noticed. He knows he's done something that will get a reaction. Its also really cute to watch Abby say, "Lucas, say Ab-by" and she gets so excited when it comes out sounding pretty darn close. And, he's officially said "Mama". Yeah! He also has a few new tricks, when I say "get Mommy" he'll turn and look at me, and reach for my face, or nose, or whatever he can grab. This is very cool because he is using his newly found hand-eye coordination, with more language reception.
.
He FINALLY got another tooth this week... may not sound like a big deal, but some doctors have been concerned about him being delayed in this area, thinking that the radiation from the many CT scans may be playing a part. His first tooth appeared in May, but it is still only half way in. Babies much younger than him already have 4-6 teeth. We're supposed to take him to a pediatric dentist to have a look, but haven't set that up yet.
.
His vision continues to improve, and we can tell that he's able to see a little further away now, maybe about 5-6 feet. I have an update on all of our therapies that I'll write separately, as Lucas had his annual review last week with all three of the therapists (there's several things to tell about that meeting). We are also entering a round of doctor's appointments over the next couple weeks, which I'm a little nervous about... he sees the Neurosurgeon on Wednesday for a CT scan (to check the shunt's performance since his surgery six months ago). I'm nervous about this one because of the fluid build-up they saw on his CT scan in the ER in July. We'll find out this week if we have anything to worry about, whether the build up is there due to a malfunction or if it was just a temporary shift after the surgery. Please pray that it is the latter. He'll see the ophthamologist on Monday, who we haven't seen in several months. I always hate that appointment because it hasn't been good news so far. I'm actually about five months overdue on taking him in because I knew it wasn't critical for him to be seen right now, and I just didn't want to hear more bad stuff. I'm hopeful that it will be more optimistic this time, especially with the improvements we've seen. We've been suspicious that he can't see out of the right eye (only the left), but his vision therapist said last week that she thinks she sees some function in that eye and the brain may be finally picking something up there.
.
We'll also see the pulmonologist in two weeks after several months of seeing her, I'm hoping she'll finally let us get rid of the apnea monitor. Fingers crossed. Now that he's on oxygen and we know about his tonsils and have a plan for removing them in 6-9 months, I don't see why we need the monitor anymore. Speaking of O2... Lucas is getting too smart! There is not a morning that I walk into his room that he hasn't removed the oxygen (taped to his face, and all). Seriously, EVERY morning it is off! And I can no longer put it on him before he goes to sleep, or he'll take the tape right off at night. Several times lately, I put him down almost asleep, go back in 10 minutes later to check on him, and he has the cannula in his hand shaking it above his head, as he looks up at me with a big grin. Little stinker! I have to make sure he is totally asleep before putting it on him, and who knows when it actually comes off during the night or morning... I'm sure the pulmonologist will be pleased about that!
.
Some exciting news in the family... the newest little Stisher arrived last week, Seth and Mary Ann welcomed a beautiful baby boy. We haven't had a chance to get down to visit yet, but we will very soon.
Meet Lucas' new cousin, Landon James Baxley Stisher....

August 2008...

Our happy boy! This picture was entered into a Preemie "Summer Photo Contest"

and was published in this month's newsletter (our little celeb)!

Little Buckeye - ready for football season!

Something tells me Lucas is going to end up with a couple
Alabama books after these pictures!

Playing with Gran in the park

First time in the pool

With Dad & Nicholas in the pool

Riding in Uncle Matt's boat at Lake Norris

Ready for a day in the sun and water!

(With his sisters and Grandma Rose)

Playing with Grandpa Don

Big smile with Grandma Barb

Giggling with Grandpa Blain

Tired little traveler This is the smile we get to see all day long!

Very short video of Nicholas playing with Lucas in the pool

(just before they blew the whistle for everyone to get out of the pool)

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!

.

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!

.

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...