Wednesday, September 21, 2011

All About Stephen

I feel kind of guilty lately because 1) I haven't been posting much, and 2) I don't think I've been sharing much of what's going on with Stephen. I feel like not much has been going on in the past couple of weeks because they've flown by and we've been so busy, but I think the reality is, a lot has probably happened. Stephen's seen nephrology (of course) and had labs, we spent a day in the hospital for an albumin infusion (a slow IV drip of medication), had a cardiology appointment with an EKG and ECHO, and both speech and physical therapy. And we "joined the real baby/kid world" and had our first music class last Friday! A BIG step for me (I was very nervous about all the germy kiddos). I won't bore you with all of the details so the bottom line after all of those appointments is that.....drum roll please.....Stephen is kickin' ass!!!!!!!!!!!! He's growing, not just out but up; his dialysis numbers are fantastic; his blood pressure is right where it should be; he's rolling over (huge milestone!!); drinking out of a water bottle, cup, and straw (a little); and sleeping!! I don't want to say too much because I don't want to jinx it, but he's actually "healthy" right now! We're even talking seriously about transplant right now. Which I can't even begin to describe how amazing that feels so I'm just going to leave it at that for the time being.

One of the many reasons why I'm still writing the blog is so that Stephen can read this later when he wants to truely understand everything that's happened to him, but I wish I would have better documented some of his milestones. So since we seem to have hit some pretty big ones in the past week or two and he's doing new things and discovering new things every day, I wanted to share some of his favorite things right now.

1. Jumperoo! You've all seen the video; this kid will jump for hours if I let him!

2. Monkey blanket - it's from Angel Dear and so incredibly soft. Stephen falls sleep with him between his arm as he's laying on his side (it's so damn cute!) and then as the night goes on, monkey ends up across his face. The first time he did this, it scared the crap out of us that he was suffocating, but he loves it when the blanket is over his face. Here's a great picture of Stephen with his blankie

3. Fishy aquarium - it's one of those mobiles that you attach to
the side of the crib. The last time we were in the PICU, Stephen had one of these and would fall asleep to it every night. So of course we had to get one for home too! He now falls asleep to the water sound every night. Sometimes I think he wakes up just as it shuts off and I have to go in and play it again. We seriously should have stock in Energizer or Duracell!

4. Any toys with lights and music but especially his Fisher Price bongos and rolling ball. Plus they've been so great at helping him to reach up and out when he's on his tummy and to start to learn how to crawl.

5. And I think he's really diggin' his new car seat (the Britax Boulevard 70) and jungle animal mirror for the car. It's got a little monkey, alligator and lion that hang down at the top of the mirror and I can sometimes hear him talking away to them. It's so cute!!

6. Oh and he's definitely found his voice!! He loves chatting, screaming, and screeching and especially loves the "n" sound. Tonight I could have sworn that I heard him use the "m" sound too. We've been working really really hard on saying mama!!!!

There's so many more little things he loves like his pacifies, his blueberry teethter and rattle, but I could probably go on and on. And my favorite thing right now is shopping for him! Gone are the days when I leave him in snap-front onesies to make it easier to access his g-tube and such. He's a big boy, so he should be wearing big boy clothes! So I've been on the hunt for shirts, pants, sweaters and jacket. It's not easy finding cute little boy clothes that fit him, but I really enjoy the challenge! He's such a joy and I love spending every minute with him. And just to show off a little more, here's a video I took last week of the first time Stephen rolled completely over all by himself. Now he's just a rolling machine!


  1. I love the picture of Stephen with his little "blankie" and the video is awesome. He really is a little superman. Let us know when you find out more about the transplant. Whatever we can do we are here for Stephen.

  2. Oooops above comment from Mary Elizabeth

  3. Such wonderful, awesome news! I am so happy for your family. I know you are responsible for his great strides! You have devoted yourself to gettinbg him healthy, and its working!

    Dont feel bad about the failure to record the milestones! I am awful at that. In fact, i rarely get the camera out anymore. shame on me!

  4. What a wonderful update! I was thrilled to meet you and Stephen in person at the MOMS Club meeting after following your family's journey on your blog. I hope we see you again soon! - Gretchen

  5. love hearing all about your amazing man!!!