Tuesday, October 26, 2010

Girl or boy?

My mom says it's a girl.

My former co-worker's string test says it's a boy.

Santa says it's a girl.

I'm feeling boy.

What do you think?

Thursday, October 21, 2010

I'm mad, but God works in mysterious ways

Lily is sick again--the second time in five months--and I can't help but wonder if it's because we took her to Dave's old school and a few of the children there grabbed her hands before I could stop them. I usually am pretty quick to keep an eye out and suggest that they feel her feet instead of her hands, but too much was going on. It probably wouldn't be a problem, really, but Lily puts her hands in her mouth constantly, so germs are quick to spread.

Maybe I'm just needing something to blame. It's just really hard anymore when Lily gets congested because she has a hard time tolerating anything that we feed her through her tube. In the past two days, I've dealt with vomiting in her car seat, on the living room floor multiple times, and in her bed. It's never fun because I'm usually holding the syringe when it happens. First comes the cough or the sneeze, then the mess.

It's also heartbreaking to see our little girl who's usually so full of life to be so lethargic. She's slept off and on all day long. She did stay awake long enough to watch Barney (her favorite show) with Gabriel. Then, this evening, she ate a little by mouth and stayed awake while we went for a stroll. But as soon as her bath was over and she was dressed, she was out. Poor thing. I guess she's really trying to get over this cold.

But here's the kicker. Lily was denied the Synergist (spelling?) vaccine. This is the vaccine for RSV. I consider it a much-needed vaccine, especially for children with T-18, because I've been through RSV with Gabriel, and trust me, it's not fun. When I talked to the receptionist at the doctor's office yesterday when I was making Lily's appointment, she told me about how Lily was denied, but then she said, "Well, if she gets to a point where we have to put her on a breathing treatment, we can appeal the decision." I told her that Lily was having trouble breathing, so she said that we would just have to wait and see what the doctor found. Lo and behold, he heard wheezing and prescribed a breathing treatment for Lily. (May I add that Lily did not see her usual pediatrician at this appointment.)

When we went in for her recheck today, her usual pediatrician looked at her file and said, "God works in mysterious ways." I was a little perplexed because he sounded so happy while I'm sitting there with my sick little girl. He explained how the information about the denial had been sitting on his desk and he was wondering how we were going to handle it, and here's Lily with a diagnosis of wheezing. He felt that was enough to appeal the vaccine.

I've seen time and time again with Lily that God does work in mysterious ways. I've also seen that most of those times, I begin mad because something didn't go the easy way, but I reach a point, humbled, because I wasn't patient enough to see it through, to see that God's mystery has been there all along. I can be so blind sometimes.

Now, Lily might still be denied, but at least if she is,this episode is the beginning of what Lily needs to convince whoever needs to be convinced that Lily can definitely benefit from this vaccine.

Friday, October 1, 2010

Quality of Life Week -- Day Five

Lily's laughter. I just can't get enough of it, so I thought it appropriate to post this video of her laughing. Dave can get her rolling, as you will see in this video. This is how she sounds when she laughs really hard.

Thank you for following this week. It has been fun sharing these videos of Lily. I hope, in some way, that they can be used to slow down the "incompatible with life" mentality that others are so quick to assign to our children. I know, I know. . .the statistics. They are there and they are real. I do not deny that. But we never truly know. After all, they are only statistics. And on the other side of them, well, that's where our miracles reside.