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.

1 comment:

  1. Tori,
    Thanks for a great update on Samuel, Luke and the rest of the family. I love the clenched fist "power to the people" visual.