Tuesday, October 26, 2010

Beating the odds.

Yes she is.  And doing great cardiac-wise!

She's such a mess.  But in a good way.  I mean "mess" as a term of endearment.  And I still miss her tooth.  The one she lost back in February.  Anyway, that t-shirt came from Children's National Medical Center (in DC).  They have an annual cardiac thing every September.  Although we couldn't go this year.  But I love the shirt.  So true.

Things have been going okay here.  Harlie's been doing well with her therapies.  She's still eating well.  She's not always agreeable, but for the most part, I'm pretty happy.  She eats about four times a day, pretty consistently.  And has been able to eat 35 ounces of food and milk each day (which is her goal).

She's been wearing her PMV (speaking valve) for most of the time at school, which is fantastic!  And if we stay on her at home, she'll continue to wear it for most of the day.

Her teacher at school is a genius.  She worked on Halloween issues last week.  She had the kids practice putting on costumes!  Last year, Harlie would not even consider putting on the costume I got her (Super Girl, of course).  And So, on Friday, I sent the same costume (yes, it still fits her and I saved money, which is great!) to school with her and they got her to put it on!  Woohoo!  And they are working on teaching them to say "trick or treat."  Seriously, this is genius.  Putting on costumes just isn't as simple as it sounds when your kid has a lot of issues.  And, it doesn't help that she doesn't eat candy, so it's hardly worth all the work to her.  She doesn't like to walk any farther than absolutely necessary, either.  And she can't say "trick or treat."  I'm thinking Halloween won't be her favorite holiday.

On Saturday, I ran my longest run ever - 20 miles!  The day couldn't have gone better!  The weather was perfect.  We had great company.  And I felt great!  I will admit that I was pretty darn nervous.  Twenty miles is a little daunting.  And to have a great run, well that's so exciting.  And comforting considering that's the longest I'm going to run prior to the marathon.  The last 6.2 miles will be all new come race day.  Now just a little over two weeks away!

Yesterday (Monday) was picture day at Harlie's school.  Ugh.  I hate picture day.  Harlie is so NOT photogenic when it comes to pictures like that.  Brandy said that the photographer took nine pictures of her before settling on one that he thought was the best.  How sweet is that for a school photographer?

Well, I am falling asleep as I type this, so I must end this now.  I have to get up at 4:30am to run 8 miles.  I promise you, I will have more time to update you once this race is over.  These longer miles have really killed my computer time.

Thanks for checking in!


Just Diane said...

So glad to hear you all are doing good. I haven't posted on here in a while but I am still reading all of your posts. You all are on mind and in my heart always.

Awesome run! I admit, I cannot run. First, I am scared to even try and second, I have no confidence. Maybe one of these days.

Susan said...

35 oz of eating/drinking a day?! Wow THAT is AMAZING! Kristy it wasn't that long ago she wasn't eating at all, right? What an accomplishment!

I love the Halloween practice. That's a great idea, but you're right, it's probably not going to be her favorite holiday.

Good luck with the running.