Monday, July 6, 2009

While we're waiting...

A few months ago I saw the movie Fireproof, and I'm once again reminded of the lyrics to a great song from that movie:

While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

As of today, we've been waiting for six months for Lauren to get her new heart.

A few weeks ago, Lauren's physical therapist did a gross motor assessment that didn't show as much improvement as I had hoped. I was also thinking about how Lauren's still not eating anything by mouth. I had such high hopes for what Lauren could accomplish while we were here waiting. After spending a while moping about what hadn't happened, I started trying to think about what sort of progress she has made.

In the past six months, Lauren has gained approximately 3 kg. That's roughly six-and-a-half pounds for those of you that haven't lived in a hospital long enough to start thinking metric measurements.

In the past six months, she's gotten 6-7 cm taller (roughly 2.5 inches). She needed a wardrobe change to go along with the changing of the seasons since we've gotten here.

Six months ago, Lauren walked into the playroom and worked some of the wooden knob puzzles. The ones where the cat piece fits into the cat-shaped hole. She struggled with putting together 12 pieces that made up a picture. Lately, she's easily finishing several 63 piece puzzles. The other day, an older girl (seven) tried to tell her that she couldn't pick that hard of a puzzle. Lauren proved her wrong.

Lauren's talking all the time. She was talking before we got here, but she's made huge improvements. Last night I walked into her room, and she started explaining how "IV team was coming up to flush my PICC line and that they didn't need to do a new IV, just fix the PICC line because the pump had been beeping."

In the past six months, Lauren's picked up quite a medical vocabulary. She knew most of the names of her medicines when we got here, but lately she learned that the often have a generic and a brand name. One night she made her nurse look up the generic name for Singulair. The only thing funnier than hearing her say "Montelukast" is hearing her talk about "Chlorathiazide or Diuril."

Unfortunately, in the past six months, Lauren's also learned to say "wutter." You know you've been in Philly too long when...

I've learned in the past six months that Lauren has an amazing memory. She's big on asking people what their names are, and she rarely forgets a name. For most of the people she sees regularly, she has some sort of "inside joke" with them. For instance, she knows which nursing student will let her draw on her gloves, which nurses will let her hold their ID badge, and which nurse will let her cut tape into little pieces. She calls one of the fellows, "Sticky Tape," which we think refers back to the night back in January when he commented on a Dora episode. Over the weekend, Lauren was talking to one of the nurses on the floor and remembered that she had helped us when Lauren accidentally pulled out her g-tube three months ago.

In the past six months, Lauren's gained a lot of strength (even if she hasn't picked up on many motor milestones). She regularly works out in the gym and is now up to a full 30 minutes on the treadmill. A few weeks ago, she was doing interval training. She'd be walking at her normal pace, and then they'd turn the speed up so that she was jogging for a minute or so. She'd recover at a walking pace for two minutes and then they'd increase the incline so that she was climbing uphill.

Even when Lauren's not in the gym, she's always on the go. I clipped a pedometer onto her pants a week or so ago for fun. She hit a little over 15,000 steps that day. Color me impressed!

Another big accomplishment is that she's starting to jump a little bit. Yesterday afternoon, she was doing quite well and got her feet slightly off the ground a time or two. She has to count, "One, two, three, jump" or it doesn't count, though.

Lauren's made many, many art projects in the playroom. We've been encouraging her to write at least an "L" so that her pages will have her name on them. Even though she can only write an L, she can now spell her first name.

In the past few weeks, Lauren finally convinced me to share my laptop. She can now type her name by herself and play a few online games. I was impressed with just how quickly she picked up on various mouse skills and how quickly she's learned to hunt and peck when I spell words for her to type.

And, finally, I can't think back on the past six months and not marvel at how much her imagination has blossomed. I think that's what Sunday afternoons with nothing going on will do to us. Much of this past weekend was spent picking imaginary apples in the empty unit down the hall. We then got some plates and plasticware out of the kitchen so that we could bake apple pies to share with most everybody on the floor.

About a month ago, Lauren asked one of the nurses to juggle for her. He asked what he should juggle, and she answered, "Pagers." He responded that he only had one and that she's have to go find two more that people didn't mind if theirs got dropped. She turned around, pretended to pick something up off of a nearby counter, and handed him two imaginary pagers. Yes, I was laughing out loud when he then juggled the "three" pagers by tossing his from side-to-side.

Another line from John Waller's song "While I'm Waiting" is "I'm waiting on you Lord, and I am hopeful."

We are hopeful tonight and every night. I know that God has a perfect plan for Lauren and for all of us. I read Isaiah 30:18 last week. "Yet the Lord longs to be gracious to you... Blessed all all who wait for him!" The Message translates this verse slightly differently, "But God's not finished. He's waiting around to be gracious to you. He's gathering strength to show mercy to you. God takes the time to do everything right - everything. Those who wait around for him are the lucky ones." One of these days I'll be able to remind Lauren of all the ways God blessed us while we wait.


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