Monday, April 11, 2011

Lots of Stuff

It is so hard to believe that tomorrow will be two weeks that Harlie's been in her cast!  It has been BUSY!  We've had lots of visitors, which has been wonderful.  It's really amazing how many good people are in our lives - and we are so thankful!  And well fed!

We've also been busy figuring out what works best with Harlie and that cast.  I think it's safe to say that we're doing well.  She's been using the bedpan without any issues.  And we've all had enough practice that we can do it alone now, which is great.  Her spirits are up and she appears very happy and always in a good mood.  Which totally flabbergasts me.  I jokingly told Tom that I'm a little concerned because she's SO happy that I'm afraid she might have lost her mind!  

Why is she so happy?  The only thing I can think of is that she gets to watch all the TV that she wants.  I think we might have to start making an activity schedule for this week (clearly I can't leave well enough alone!)  But I am so sick of having that TV on so much!  I think we'll need to do book time, painting time, school time, etc.  Now that I know she's not in pain (and clearly she's happy) it will be easier to start to expect her to do something other than watch TV.

She's also eating fantastically and is now averaging between 25 and 30 ounces per day orally - and 0 through the tube.  I can't believe that she has not been tube fed in over two weeks!!!  We still use the tube everyday for water and meds.  But I never expected her to be doing so great with feeding.  She even asked to eat breakfast on Saturday!  CRAZY!  

On Thursday, Jennifer borrowed a friend's wagon for Harlie to use to be able to go outside.  It was the perfect day for it, too!

Jennifer asked her if she wanted to swing, and she said yes.

Me pushing Jennifer and Harlie on the swing.
It might not look like she enjoyed it, but she did.

After that I went to Murphy's school to have lunch with him.  It was our turn to be "parent of the week" - perfect timing, right?  We had to pick a day to come in to spend 20-30 minutes in class reading to them or sharing an experience, culture, or whatever.  I stressed a little over it because I was really tired last week and I had no idea what I was going to do.  Oh, and I think a whole bunch of 6 to 7 year olds could be intimidating.

Murphy gets to pick one friend to come to the parent table and J. is who he picked...

Me, J. and Murphy.  
After lunch, it was time to head to the classroom.  I am so mad that I forgot to get the teacher to take a picture.  It was actually quite cute.  And it was VERY enlightening.  I will no longer worry about Murphy in school.  His behavior seems to be completely normal!

So, I decided to talk about/teach some sign language.  The kids seemed very interested and most just kept their hands raised the whole time so they could ask how to sign a particular word.  Most asked for normal words, like cat, dog, lion, etc.  One kid panicked when it was his turn to ask and he looked around the room and then said, "how do you sign curtain?"  Yeah, I don't know that one.  One asked how to sign armadillo.  Really?  Kids are funny.  And then it went down hill.  One kid said, "I know a bad word in sign."  Ugh.  So, I said not to sign it and pointed to another boy who had his hand raised.  Then he said, "I know what this means" and his hand was like this:

I said, "That's the letter F" and then he pointed to the three fingers (one at a time) while he said "A. S. S." and then pointed to the thumb and index finger and said "hole".  Nice.  First grade, people.

Well as you can probably guess, that ended the sign language portion.  So I grabbed Skippyjon Jones and started reading.

Overall, it was a really good time.  And very educational for me.  Now I know how to say "ahole" in sign.  That's really not how you do it, by the way.  At least, not that I saw when I looked it up when I got home.

Then, Mrs. Katie, Harlie's preschool teacher, came over for her homeschooling time.  I really think Harlie enjoys that hour.

Then on Friday morning, Tom's mom (Maryann/Grandma) left to go back to Pennsylvania.  We were so glad she stayed another week after we got home.  It was really good for Harlie to see her that much.  Usually Harlie doesn't get to see her much since she's here when Harlie's gone.  And she was such a big help during a very busy, getting back into the groove kind of week.  We are so thankful for all she does for us!
Grandma and Harlie.

Jennifer got Harlie that cloud pillow.  It is a wedge thing and
works perfect for keeping her from sliding down too far.
Then Traci (Harlie's PT) came over to bring us some equipment to use.  She brought a stander to help her put some weight on her legs.

Traci, Harlie and me.

Brandy, Harlie and Traci.

Once she got over the initial fear of what was going on, she didn't seem to mind it that much.  She stayed in it for a few minutes.  We're thinking that once she is more pain-free she will actually want to stand to take some pressure off her back.

Plus, she's gotten some really cool gifts this week from friends and family, and standing like this would make for better playing.  So, we're going to work on that this week and see what she can tolerate.  Traci also brought a larger walker for her.  I don't think we'll be doing that one on our own, but you never know.  I'm going to let Harlie lead the way on that.

Another good thing about this week was that - despite it's busy-ness - I managed to get in FOUR short runs!  I'm slow.  Really slow.  But I'm hoping that it won't take that long to get back to my old endurance and pace.  Honestly, it just feels good to be running again.  Hopefully I can keep it up!

Well, that's it for now.  More later!



Anonymous said...

I am so happy recovery has gone well. Way to go. You are a tough little family and cope very well. You know when to let things slide and catch it tomorrow. All our best for all of you especially Harlie. That was a wonderful picture Grandma. Love Ron and Sue

Veronica said...

Harlie looks like she is doing great! I bust out laughing at your sign story. I have a 1st grade son too so I know that age well. :)

Susan said...

Christy it sounds like things are going really well on a lot of levels. You guys are resilient, so I'm not surprised at all. Also, you've got great support and that's huge!

I think it's great to find other things for her to do, but more TV than average isn't going to kill her and if it keeps her happy in that cast I think it's worth it. Though it could be hard when the cast comes off I suppose, because the reality is the time passes quickly for the most part.

Much Love!

Sue Mitchell said...

Harlie is a trooper and we all know where she gets her resiliency (hope I spelled that correctly!) Loved the sign language story. It's been a long time since my kids were that age but I still remember some surprises when visiting the classes. Glad you got in some runs.
Take care.

Anonymous said...


I'm new to your blog--I followed the link from Building Cathedrals (via B-Mama). Harlie is quite a fighter. I've read some of your earlier entries from her first year and she has overcome so much in her life. What an amazing girl--who clearly has an amazing family to support her.

Anonymous said...

Looks like she's taking it all in her stride. What an amazing girl and an equally amazing family and support network. Hope the rest of her recovery goes as well.

Lisa B
Hampshire, UK