December 12, 2011

Time Lapse

10AM: I sent Luke out to play this morning in a jacket, a hat, and shoes since it was hovering in the low 40's still. 

10:05AM: He ditched the jacket on the porch.

10:10AM: He ditched the pants and the hat, but put his shoes back on.

10:11AM: I brought him back in to get dressed again before the neighbors called DSS.

10:15AM: Sent back outside. Fully clothed.

10:20AM: Caught in the act.

10:21AM: I gave up.

10:30AM: He came back inside, filthy and scraped up, popsicle toes, and beyond happy. I'm not totally sure I'm ready to raise TWO boys.

December 9, 2011

Sam the Man

We are half way through Advent, and it feels like I just came up for air for the first time in weeks. I absolutely love this time of year. The Christmas music, the lighted houses up and down my block, the extra busyness at church, all the Christmas programs and carols and adorable children who are begrudgingly wearing itchy shephard costumes...I love it all. However, every year it seems to get more and more exhausting. It wasn't so bad when it was just Travis and I, but now with the boys, Advent loses a little bit of it's luster. I'm sure it will get easier again, when I'm not having to chase a toddler away from the Chrismon tree while juggling his baby brother on my shoulder.

Last weekend alone, we had multiple things going on every day, and we still had to make our excuses to two parties that we were just too wiped out to make it to. This weekend is marginally better, but still includes a Live Nativity and two separate work parties, not to mention a Sermon Saturday. (Not to mention that they are ALL Sermon Saturdays now. But that's for a separate post.)

Our weekdays have gotten busier also as we have started on therapies with Samuel. We have Speech (feeding) Therapy on Wednesdays and Physical Therapy on Thursdays. He is continuing to recover very well from his surgeries and is making progress with both therapies. We started physical therapy with him the week before Thanksgiving, and speech just last week. When Luke was this age, I remember being obsessed with those little milestone charts. I was anxious to see him master each new trick. During the first year of life, so many of those milestone are physical ones: supporting their head, sitting up, rolling over, pulling up, etc. Luke, while not advanced in verbal areas, was always way ahead of the game in the physical aspect. So, it was easy to tick through those charts and feel smug. The reality of it is that Luke has been strong and independent from the get go, and those charts are basically worthless.

However, seeing Samuel make such slow progress and fall further and further behind has been sobering. He's just now getting back to where he was prior to his heart surgeries. Which means he is at least two months behind. I know that even if he hadn't been a "heart baby," his progress would have been much slower than average. I'd already schooled myself to ignore the milestone charts, and instead focus on helping him be as strong as he could be. He has one more week of sternotomy precautions and then he will be free of any limitations. Not that he will be able to start doing baby push ups or anything...but if he were so inclined, he would be allowed to. Since the 6 week clock had to be started over again when he had the pacemaker surgery, he hasn't been allowed to spend much time on his tummy since October. Because of the restrictions and his time stuck in a hospital crib, he's developed a flat spot on one side of his head. We are just watching it for now and working on ways to help correct it. So far, no one has said he needs a helmet, but we might end up there in the future.

Physical therapy with an infant has been interesting to watch and learn. We have a great therapist who comes by the house once a week to spend an hour with him; stretching, rolling, and help him use muscles he wouldn't do on his own. We've been very encouraged to see him move his legs and arms a lot. In fact, his legs are kind of crazy. While his upper abdominals have been weakened significantly because of the incision, his lower abdominals are insanely strong for a baby who is supposed to struggle with low tone. He kicks like he is a ninja on steroids and he loves to stick his legs up in the air at a 90 degree angle and just leave them there while he examines his toes. His arms and chest are beginning to wake back up again and he discovered his hands this past week. He does his closed fist, power-to-the-people arm raise all the time now. It's nice to be able to report progress at every session with the therapist, especially because this was one area I was most concerned about when I was learning what it meant to have a baby with Down Syndrome.

He is still struggling with his strength in his core and neck, but again is looking much better than he did when we first started. I start feeling like he is a champ and catching up, and then I look at pictures of Luke at the same age, and I see him holding his head up and supporting himself on his legs, and reality sets back in. It doesn't take anything away from the progress Samuel has made, but it does keep me from forgetting that we are just making baby steps down a very long road.

He's still amazing in what he's been able to overcome and conquer in his short life. We will head to the cardiologist next week and get a report on his pacemaker. We've finally got our equipment set up to be able to monitor his pacemaker. Well, actually, we can't monitor it ourselves, but the equipment will check it and send a report to the doctor. Travis and I are both anxious to learn just how often he is having to use it. There is still that lingering hope that he doesn't need it anymore and that it will eventually be removed. As much as I've come to terms with what this pacemaker means for Samuel, I would love to miss out on a lifetime of monitoring and battery replacements and worrying. However, it has been lovely to be home and to see him happy and kicking and smiling, so if that's what I have to take in trade, then I'm ok with whatever the doctor tells us.

December 2, 2011

Alter Ego

This past week, it has become abundantly clear that we are now housing a two year old. Like a really TWO 2-year old. And all the cliches and glories that come with it.

Luke has always been a pretty good tempered kid/baby. He is easy to laugh and loves nothing more than a good chase around the house. He's the first at the door to tell the UPS man, "HI!!!!" and grabs the hand of the kid who is hesitant to come into the nursery at church to pull him in the door. He runs to watch the school bus and the garbage trucks come by the house. He oohs and ahhs over airplanes and stars in the sky, and just about lost his mind over seeing the Christmas lights pop up around the neighborhood.

And he's still that same kid...but now with his brand new bonus alter ego: Mr. Whiny McAngryson.

He flips out when I take away the pacifier he's stolen from his brother. He throws the computer out the door when I tell him he can't go outside (True story. Thank God for insurance plans). He lays flat out on the sidewalk when I dare to go left when he wants to go right. Whenever I tell him he can't have something, he takes said object and chucks it as far as he can. He won't tell you he is hungry or thirsty, he just grabs at your arm and whines for minutes on end until you get up so he can drag you to the kitchen where he says, "COOKIE" over and over until he melts down when you say, "No, it's 9AM, you can't have a cookie."

He tests boundaries and pushes my buttons like never before. At first, I wrote it off as semantics. He still doesn't talk very well, so when he got the nuances wrong, I thought it was accidental. I ask him to sit at the table for lunch, and he sits ON the table to eat. I ask him to hand me his shoes, and he will put them on the opposite side of the room. But along with doing these things, he now looks me in the eyes, gets a sly little smile on his face, and does the exact opposite of whatever I ask him to do.

It's maddening.

By the time Travis gets home in the evening, I feel like Luke and I need a referee. My nerves are so shot from dealing with it all day, that I blow minor infractions out of proportion. Last night, as I was dealing with Luke, I heard Travis talking to Samuel who he was holding in the living room, and saying, "Mommy is exasperated."

And that's it exactly. After two or three hours of his non-stop alter ego showing up, I am exasperated. I literally want to put him in the backyard and lock the door so he can't get back in until I am ready to deal with him again. (Don't worry...I'd give him a jacket first and I'd probably check to make sure the gate was locked.)


To top it off, he is hit or miss on taking an afternoon nap now. If he doesn't take a nap, by 5 o'clock, he just doesn't have the emotional stamina to even have remotely rational responses to anything. Spaghetti for dinner? Melt down. Take a bath? Epic meltdown that includes him valiantly trying to keep you from taking his clothes off (Which's kind of funny to see him lose his shit just because you dare to take his arm out of his shirt. But whatever, I'm only human.).

As with all stages, I know this will pass. But please, don't tell me how much worse 3 year olds are. I've already heard the rumors. I hope that by then I will not be pumping anymore, so at least I can have a drink at the end of the night.