Thursday, July 15, 2010

Everything changes, nothing remains without change - Buddha

One of the things we've heard over and over since we found out Alex had SB is we'd have good days and bad days. She'd be more like a typical child than not and we'd have challenges just like any other family, however ours would just look a little different. I think we do a pretty good job of focusing on the good things and we've learned to appreciate smaller measures of progress Alex has made despite the fact she has not hit many major milestones, like sitting up on her own or crawling. I feel like we've come up against a lot of challenges in the past few months and with a new baby on the way and a lot of change ahead, I can't help but feel anxious.

We recently had SB clinic and a lot of different things were brought up regarding the next couple of years. As the various doctors visited with us a lot was thrown around that made me feel that same uneasiness I felt when we were first learning Alex had SB. I remember the docs talking with us about fluid in the brain, surgeries, cathing, bowel issues, limited mobility and all the scary things a parent should never have to hear before their baby is born. This time at clinic different procedures were brought up, more surgeries and just hearing a doctor mention a 10 week body cast for one of the procedures was enough to take me back to that familiar place of the unknown where the fear sets in. I think in many ways we've gotten comfortable with Alex's care and even things like cathing seem normal and something we don't even give a second thought to. As Alex gets older there are a lot of new challenges she'll face, especially as we strive for her to be as independent as possible. For now, we just wait to see how her development and growth plays out. We've learned to find peace in taking things one day at time and doing the best we can for Alex each day.

So what else is new with us...well...we are getting ready to move at the end of the month (we love moving when I'm very prego). We've been spending a lot of time getting our new home ready and just as much time at the doctor's office I feel like. Alex came down with a really bad cold at the end of June and can't seem to kick it. I was sure she had a UTI on top of it on two different occasions and even took her to Children's ER one night and both times they sent us home with negative results. I was starting to think I was the one who needed checked out. We started some antibiotics yesterday for her cold so hopefully she starts to feel better. We could all use some good sleep.

The pic to the left was actually taken this winter. I had one from last week, however it turned out really blurry. When Alex has to get a chest x-ray they put her in this contraption called a pigg-o-stat and the goal is to get a good image of the lungs full of air. This requires either a really deep breath or better yet, crying. Alex thinks it's funny to be in the pigg-o-stat and we never end up getting good images of her lungs. The radiologists say they've never seen anything like it. They always warn me that kids get really upset in it and after a few minutes of Alex being in it, they look at me puzzled and ask what I can do to make her cry. This last time I said let me try walking out of the room and as I looked back I could see Alex's little hands waving goodbye to me. Gotta love it :)