Random Stuff

It's been a busy week.  Harlie's spirits are still great.  The only time that she has trouble is at night, going to sleep.  If she falls asleep, she soon wakes up crying and she obviously can't get comfortable.  I'll go in there and she'll be on her back and she'll want "up".  So I lift her more on her pillow, and put her on her side.  She'll appear to go back to sleep.  I'll get back in bed and just fall asleep.  And 10 minutes later it all happens again.  Over and over.  Until we give her some pain meds.  Then she's fine.  I was just hoping to wean her off her pain meds completely by now.

On Monday I went and worked out and did Adrenaline (a group exercise class outside that kicks your butt) for the first time since the fall and then I came home and did yard work.  That was probably a really bad decision.  While I was working in the yard I pulled my back in a funny way and it has hurt ever since.  Needless to say I was sore from working out for days and then to combine it with my back aching, it's been horrible.  And so not convenient considering I have to lift Harlie.  The worst is when she's in her bed at night.  The way you stand at the bed and have to lean over to lift her is the worst.  At this rate, it will never heal.  I really need to figure something out.

Anyway, back to her - she's been going into the stander several times a day for up to an hour each time.  As of right now, I don't see her standing willingly without the stander, or walking as long as she's in that cast.  I don't know if it's still a pain thing, or if she's scared.  Without the stander she won't put her feet down.  Hopefully the stander will help her gain some strength and confidence.  And maybe soon she'll realize that standing has its benefits.  She can only play with Aqua Sand if she's standing (thanks to a wonderful neighbor!).

That is some crazy stuff.  It really is completely dry coming out of the water.  Anyway, in the tray on the stander is a well for water play.  She will stand there for a long time and play with that.  She loves it.  She doesn't try to make anything, she just likes scooping it from one place and dumping it somewhere else.

And I am happy to say that we've been able to turn off the TV for hours at a time with no argument from her at all.  She plays with all kinds of cool gifts that she's received from wonderful friends and family.  Let's see... she's colored, played with one of those magic pens that reveals hidden pictures, played for hours with fuzzy colorful pipe cleaners, found hidden pictures in a Highlights books, memory games, Light Bright, and more!  Jennifer got her a bedside table that tilts, so that's been extremely helpful for a lot of these activities.

This afternoon the boys went outside to play and she signed that she wanted to go, too.  So, when Tom got home and we finished dinner we went for a little walk.  We put her in the wagon and walked down the street and visited with some friends.

While we were chatting Harlie wanted to be held the whole time.  I think she wanted to see what was going on, and from the angle that she lays, she can't see that much.  But, she is so heavy.  It is hard to hold her for more than a few minutes.  She saw Cooper get in one of those cars with the door that opens and she signed car and wanted to get in, too.

There is no getting her in there.  Break my heart!

Since we ran into some friends, we were later getting home than planned.  And then I realized that I never fed Harlie.  Oops.  In the past, I would have just tube fed her.  But, she's been doing so great eating that I didn't want to do that.  So, I fed her while Tom got the boys bathed and ready for bed.

She ate great today, so to meet our goal of 30 ounces per day, she only had to eat a few ounces more.  So halfway through her feeding (when I knew she had reached her goal) I asked her if she wanted more or if she was all done.  And if you can believe it - she said MORE!!!  Whoa!!!!  So I fed her until she said she was all done.  And she ended up with a total of 35 ounces for the day.

I really hope that will start to happen more and more.  It would be awesome if she could be more in control of her eating - but in a normal way.  I would imagine that it would make eating more enjoyable for her if she knew that she could stop it when she was full.  So, we're keeping our fingers crossed that this is the beginning of a new normal!

Oh, and Harlie's getting a new tooth.  One of the bottom ones that she lost during her spinal surgery is already coming in.  I suppose that must mean that it was already a little loose prior to surgery.  Of course, I'm a little nervous about a permanent tooth coming in come in so soon.  I know she has oral surgeries in her future - no matter what we do (she has all her teeth in half the jaw).  But her having permanent teeth are so... well, permanent.  No pressure there.

Spring Break is next week.  Surprise!  We're not going anywhere.  We've decided that we are having so much fun here, that we're staying!

Actually, Jennifer (one of Harlie's nurses) is organizing a trip to the Richmond Zoo.  I've never been.  But, if the weather is cooperative (not too hot) then we're going to try to go and take the kids (her 2 kids and my 3).  If it is too hot, then we're going to try to take them to a movie.  I am so glad to have someone else's energy to help me get them out of the house.  I just don't have it for that kind of outing.  If it were up to me (considering I don't like to plan anything) we would do nothing.  And not because that's what I want to do.  Okay, so maybe I would like to do nothing for a week.  But, Monday would come with no plans for the day and it would slip right by.  And that would happen every day.  I'm just so tired!

But, since we are blessed with wonderful nurses to push me when I need it, we'll go and do something.  We'll probably take them to a park.  I'm going to feel bad taking Harlie to a place where she can only watch other kids play.  But, I'm going to feel bad if I don't let the boys have fun.  And they simply cannot stay in the house everyday for a week!  We'll all lose our minds for sure then!

I forgot to mention that Cooper's vocabulary has just blossomed these past few weeks.  You might remember me telling you that he would not say "Daddy".  Well, his Grandma got here right before we left for Harlie's surgery and 30 minutes into her stay he was calling her "Geema".  Well, I'm happy to report that he now says Daddy.  And I need to get a counter to count how many times a day he says "Mommy" because I'm pretty sure it would break some sort of record.  Some days I want to run screaming from the house.  Oh, how I love that boy!

Anyway, I'm also happy to report that he no longer calls Murphy "Ben".  He now calls him "Urpy".  And he'll say, "Where'd Urpy go?"  So, he's speaking a lot more, which is great!  Of course, his eating habits are still atrocious, but I guess it's one thing at a time.

There's more, but this is all I have the time for now.  It's been another busy week with lots of visitors bringing us wonderful food.  We are so blessed to have so many great people in our lives!

Thank you!
~Christy