Can't catch a break!

You know that person out there that just can’t catch a break? The one that seems to always get the raw end of the deal – loses their wallet, their glasses, and their shoes, and then gets in a car accident all in the same 20 minute period. You want to make the world stop for a while so that person can catch their breath and catch a stroke of luck.

I feel like Will is one of those people who just can’t seem to catch a break. Not only does he have the daily challenges of a small child living with cerebral palsy and a cortical visual impairment, but he had to have a g-tube put in and his adenoids removed in the same year. But it doesn’t stop there…

Little Will has to have yet another surgery in October for something totally unrelated to any of the other ailments mentioned above! You may recall a while ago when I mentioned Will’s trip to the urologist to talk about an undescended testicle. At the time, they felt as though the testicle was “retractable,” which meant that it went up and down at will. We were scheduled to follow up in 12 months.

Well now that little boy’s little boy is stuck in the up position. So they have to go in and retrieve it. How fun.

Hopefully after this surgery, Will can catch a break! He needs one.

Pumpkin patch with Will's class

We went to Hill Ridge Farm in Youngsville with Will's pre-K class this morning. What a great time! We had never been there before and were impressed with all the fun things to do. There's a farm animal feeding area, a corn pit, a large slide, a train, hayrides, and many other things to keep kids enthralled for hours! We also enjoyed getting to know some of the other kids (and their parents) in Will's class. Its a great way to learn about therapies, feeding ideas, equipment, and transportation.

Even though we went in the morning, it was 90 degrees by 10am (where is autumn??). Will and his classmates don't do well in the heat, so we did our best to make them happy and keep them in motion. Will's favorite part of the day was going down the big slide with Nate. This thing was probably 30 feet off the ground.

If you want to experience the slide with Will and Nate, click on the video below (if you get this update via email, check out the weblog to view). Looks like fun, doesn't it?!

Control

Will doesn't have a lot of control over his body. That isn't to say that he doesn't work exceptionally hard to control the things that he can. He works harder than any kid should ever have to to do things that you might take for granted and probably learned to do before you were a year old.

Due in large part to his cerebral palsy, Will has never truly learned how to roll over. It is a skill that he works on daily with us and his physical therapists. Because of this, we lay him on the ottoman in our living room a lot when he needs a break from sitting in his chair, we're changing his diaper, or when we just need to put him down for a minute. For the majority of his 3+ years on earth, he's always been right there when we came back.

There have been a couple of times recently when we've left Will on the ottoman, to come back a short time later and find him on the floor. Only we hadn't heard a thump, and he wasn't crying. It was very odd. But it started happening with enough consistency that we figured Will was doing it on purpose.

So I finally caught him on camera! Will appears to get himself off of the ottoman and onto the floor because he wants to... and because he knows that he can! He can do it consistently and he is VERY proud of himself when he does it. He wiggles himself to the edge of the ottoman, kicks his legs until his lower half starts moving towards the floor with the aid of gravity, and then slowly turns and lowers himself until he laying is on the floor. With a huge smile on his face.

Honestly, he's the smartest, funniest, quietest, most covert 3 year old operative I've ever seen!

Mama gold

We take a lot of pictures. It isn't because we have a great camera or a penchant for photography. We're simply trying to document our lives (the good, the bad) and we end up taking a lot of photos so that we can post the cutest ones on our blog and in my scrapbook (I don't tend to keep the ugly ones).

The other night, as we were getting ready all the boys ready for bed, everyone was in a good lovably agreeable mood. The stars aligned for a Slavik boy photo. I ran to get the camera and managed to snap about 6 photos before the moment was gone. Good thing I have some swimmer ab muscles left after having 3 babies, because running up the steps two at a time is kind of tough work for me these days! But I had good motivation.

So below I reveal the magical photo. Sure, to you, it might not seem like much! But to me its mama gold, the money shot... how often can you get three young kids looking cutely and kind of smiling at the camera all at the same time? When one of them is an infant, one has a visual impairment, and the other pretty much does the opposite of anything we want him to do?!?!?!

He didn't say no...

... he said "hell no."

Those words are the modified refrain to a country song. I don't know what the song is called. I don't know who sings it. All I know is that when we tried to feed Matt rice cereal tonight, that is the song that popped into my head.


Needless to say, the boy is not a fan. Despite our valiant efforts, he pushed everything right back out of his mouth. The plan is to give him a week to recover and try again. Perhaps with something a bit more tasty. By the looks of things, Matt is relieved by the mention of this new plan.

He also says thanks to Nana Jean for the cute bib! Maybe Matt will be willing to make it a bit more messy next time.

Aunts and Uncles

Nate and I both come from families where we have a lot of aunts and uncles, so when it comes to our children, we incorporate our friends into the surrogate aunt and uncle roles. We were all so lucky this past weekend to visit with our very good friends... both Will and Luke love them some Uncle Chris and Aunt Jenn! And of course Matt, Otis, Nate and I got in on the fun as well.


We took them with us on a hike at Eno River State Park. Of course, I was happy to have more people with us at the park to evenly distribute bridge-crossing responsibilities! And Otis did much better at not being a wimp when going across!


This weekend was also Uncle Chris' birthday, and Luke and Will's half birthday. When I was growing up, we always celebrated half birthdays... I think mostly because all of my family had birthdays in March and April. By the time September and October rolled around, we needed something to celebrate! So we got some little cakes and sang Happy (Half) Birthday. Will and Luke are now officially 3 and a half (eek!) and Uncle Chris is... not.


We spent a lot of time hanging out at home, cooking, laughing and playing with all the boys. Good times! Who remembered that Slinkies were so fun?! Can't wait to do it again!

A quick pass to the little man on the outside...

Nearly 6 months ago now, I posted a photo of myself with a "full size" basketball to emphasize the enormous proportions of my growing baby belly (see A basketball reference). It seems appropriate now to pass the ball to the little man who made that photo possible! Such a big guy! It is really hard to believe that almost 6 months have passed since that blog post, though, time is going so quickly.

Let's get physical

Although Luke and Will receive physical therapy at their respective pre-school programs, we opt to also take them to a separate physical therapist after school hours. Ms. Jen has been with the boys for more than a year now, and they really like her a lot (so do we!). We like her creativity, the consistency, and the fact that she sees them even when they are tracked out from school and not getting other therapies. It makes PT nights a bit challenging logistically, because the boys go to PT after I get home from work, but it is a challenge that's worth it.

Typically Nate takes one of the twins to PT and I stay home with the other twin and Matt. Lucky for me, last week Luke and Will were scheduled for the same evening. Matt and I got to go experience Luke and Will in PT. Exciting for me, indifferent for Matt, and weird for everybody else. Oh well.

Luke was up first. Ms. Jen first puts him on the treadmill with weights around his ankles. He walks forward for about 5 minutes at a slightly fast walk, but the part he really looks forward to is his one minute of walking backwards! He does really well on the treadmill (he gets to turn it on, which he loves) and doesn't seem to mind that it is actually work to strengthen his legs.

After the treadmill, Luke goes through a number of obstacle courses which require him to climb, change weight-bearing on his feet, go up and down stairs, step over things, and jump. A lot of these things still prove challenging for Luke, but he definitely enjoys the praise when he does well.

When he is done with his PT, he gets a lollypop. On the day I was there, he was particularly good and got to scoot himself around the gym on the PT equivalent of a skateboard! He had a blast and unbeknownst to him, help to build some arm muscles! If you get the blog update via email and want to see the video for this, check out the blog directly at http://www.ncslaviks.blogspot.com/.

Will doesn't really look forward to PT as much as Luke does. As much as possible, Ms. Jen incorporates toys into his therapy but Will just has to work so hard to do even things that might seem simple to us. I think that he knows walking through the door that he's in for a rough 45 minutes. If he could tell time, I can imagine him watching the clock.

For Will's PT, he does a LOT of stretching to relax the increased muscle tone he has in his arms and legs. He also works on rolling over, holding his head up while on his belly, and reaching for things at a distance.

On the night that I went, Will was particularly unhappy when Ms. Jen worked with him on sitting and standing. These are tasks that Will works on a lot with his physical therapist at school, with our nursing assistant at home, AND with Nate and me... but it doesn't seem to matter. Because of his lack of muscle tone and coordination, the acts of sitting and standing are really tough for him. We keep trying, so one day he can do it on his own! In the mean time, we turn our ears off to his whines and keep our eyes averted when he breaks out an inevitable Old Man Face.

Ms. Jen has indicated to us that she can tell Will holding more of his own body weight when he sits up, when compared to his posture when she first started working with him. Way to go Will! I didn't really get to see that, though. Of course on the night that I was there, Will's muscle tone bounced between that of uncooked and al dente spaghetti... there was nothing in between!

Ironically, Will's favorite part of PT is when Ms. Jen seats herself on a dolly (like the furniture moving kind), leans him against her, moves his feet, and they go walking together. From my perspective, this seemed like the hardest work for him... but my perspective doesn't seem to mean boo! Will seems to take a lot of pride in walking. And even though it is pretty physically demanding on Ms. Jen, Will does so well with walking that she does it for as long as Will will tolerate. It was exciting and tear-inducing for me to see! Again, if you get the blog update via email, check the actual weblog to view the video!

So there you go... a typically long-winded view into a small portion of our lives as parents of two very special little boys who continue to work exceptionally hard to overcome their challenges!

Shocking!

I snuck up on Matt after his bath this evening to snap a picture of him as he was telling himself a a babbly story. He had a very serious face while he was talking, as if he were truly in a deep conversation with himself. In all his talking, he didn't see me coming and I got a shocked face instead! Eeek! Happy Friday!

Speed demon

Will loves to move. He loves to go fast. Sitting still is probably his least favorite thing to do. If there was a way to safely load him into a rollercoaster, I think he'd be the happiest kid on Earth.

We went to Marla Dorrel Park in Cary on Monday to enjoy the great end of summer weather. First stop was the large serpent in the ground. For Will, this is the only stop that matters. Daddy runs him around and around, over the hills, around little kids just to hear Will's squeals and laughter. Below is a video of Monday's best run (as always, if you get the blog update via email, its best to check out the video by visiting the actual blog at www.ncslaviks.blogspot.com).



I assure you, no children were injured in the creation of this video!

Adventure-caching

Luke's primary daytime nurse from the NICU, Lauren, read a recent blog post and suggested that we use our newfound adventuresome spirit and check out geocaching. This is basically treasure-hunting for the 21st century - wherein people hide something, post the coordinates online, and someone else uses their GPS to find the treasure. Thanks for the idea, Lauren!

So the boys are a little young to understand the premise of geocaching, so instead we're just taking an opportunity each weekend to go out and find an adventure... adventure-caching!

Last weekend, we stopped in at Eno River State Park, about 25 minutes from our house. By the map online, it looked as though they had easy trails very close to a parking lot - perfect for us and the jogging stroller. We got started early to beat the heat.

But unfortunately, like so many other parks, you have to hike on a difficult trail to get to the easy trail! Why do they do that? It makes no sense. Anyway, we got about 0.01 miles into our hike before Nate and Will (in his backpack) took the jogging stroller back to the van. Luke (on foot), Otis, Matt (in the Baby Bjorn) and I opted to continue on to find the bridge over the Eno River and wait for Nate and Will to return.

Luke hiked that difficult trail like a champ, even mastered the stairs down to the river with minimal assistance. He was excited when he saw the bridge over the river. I, on the other hand, was petrified instantaneously. It was a suspended cable bridge, about 20 feet over the water. I am not afraid of heights. I like adventure and even a little danger... but not when I have two kids and a wimpy dog in tow on a bridge that moves!!

We climbed the stairs to the bridge: Otis in front with his leash in my left hand, me and Matt (who was wildly swinging his head all over the place to see what was going on), and Luke bringing up the rear, holding onto my right hand and doing his best to look straight down at the river beneath us. Everything seemed to be going fine, so we continued on to the bridge. By the time I realized this was a bad idea, we were already on our way to the other side.

With the first step on that bridge, Otis got freaked out. For a dog as regal as he wants to be, he looked downright cowardly as he got down onto his belly to cross the bridge. Luke's progress slowed as we got further across the bridge and he realized how much fun it was to bounce with each step and make the bridge move up and down, and side to side! Though it wasn't a terribly long bridge, it seemed like an eternity until we crossed safely to the other side. On the walk back, Nate took Otis. Phew!

After Nate and Will caught up with us, we walked about a mile on the smoothest, easiest trail you've ever seen (the jogging stroller would have been perfect)! Luke did wonderfully on the long walk, and didn't seem tired until after we had decided to head back to the van. Will did well with the longer trek in the backpack, and Matt actually fell asleep in the front pack for most of our adventure.

On the way back to the van, we sat by the river for a while and let Otis play in the water. Luke enjoyed throwing rocks into the river, and Matt enjoyed his time out of the pack. Will just wanted to get moving again... he loves being in the backpack and walking around. He hates to stop moving and is very clearly (and audibly) dissatisfied when Nate rests.

In a strange twist of irony, on our way back to the van at the end of our Eno River adventure, we ran into Nurse Lauren and her whole family on a geocaching adventure! It was fun to chat on the trail for a few minutes, and show off Luke and Will, who she hasn't seen for about 2 years.

Good times... and I'm always on the hunt for a new adventure, so send any new ideas my way!