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

She can stand!

Okay, first of all - just in case you are curious. The Sharpie "drawings" on their legs came off. We looked it up on the internet and found that baby oil was recommended for removing the ink from the skin. And what do you know - it worked. So, for all of you with young children - you might want to store that hot little tip in your memory bank. Or you could just better supervise your kids. Whatever works for you.

So, we had physical therapy today. It went really well. Traci got her to walk a lot. She definitely CAN do it, she just hasn't realized it yet. She's taken at least 10 steps on her own. She is still very scared and does not like to be unstable. One thing we've been working on for a while is teaching her to stand up without holding on to anything. Traci thinks that once she gets that, it will help her realize that if she falls, she can just get back up. So, as time has gone by, she has seemed a little more cooperative with it. And today she did just great.

So, I'm getting the kids ready for bed and Harlie starts goofing around on the floor. Laying on her back and just doing silly things with her legs. It is SO nice to see her do some normal toddler things. I can really tell that she is getting stronger and stronger. Anyway, Murphy comes in and they're playing and I'm measuring out Harlie's meds and all of a sudden Murphy says, "Look Mommy, Harlie's standing!" And sure enough - she was standing all by herself, clapping and smiling. I couldn't believe it!!! That is the first time she's ever done that completely on her own!!! I am so excited!!

Of course, she sat right back down. But, Murphy asked her to stand again, and she did! So, that time I got to watch her. Then once she was up I told her to walk and give me a big hug - and she did!!! I really hope she'll do it again tomorrow so I can get it on video.

We also started our new schedule with our speech therapist, Beth. She has taken over Harlie's feeding trials and will continue to do her speech therapy as well. So, she'll be coming twice a week (an hour each) from now on. Harlie is doing well with the oral trials - it just takes more patience on my part than I could possibly put into words.

I've known for some time that it will take years for her to be able to eat by mouth - especially enough to lose her g-tube. And I'm fine with that for the most part. I've accepted it. But the trials are SO frustrating. And I mean, frustrating that I can't get her to swallow. It's not something we can just make her do. I can keep up with all of her doctor's appointments, order her supplies, give meds on schedule, make her walk, clean her wounds, follow doctor's orders, etc. But I cannot make her swallow. I put baby food in, it comes out. I squirt thickened water in and it comes out. And that's what we need to do to get her where she needs to be. Each day with the stretches, and food presentations her tongue is getting stronger and stronger, but, it is a slow process. One that you can't see.

So, three times a day, I have to make myself sit down and do what I'm supposed to do. Even though I hate it. There. I said it. I hate it. I hate that she can't eat by mouth. I've hated it from day one. I hate little shirts that have cute little cupcakes or ice cream cones on the front of them. I hate that she doesn't know what a cookie tastes like. Or how to lick a lollipop. Or how to lick her lips for crying out loud! And next month she'll have another birthday and the cake will mean nothing to her. This is when I need patience. This will all happen for her - one day. Just not anytime soon. And if I don't sit down with her and do what I'm supposed to do each day, it will take even longer.

Don't get me wrong - it's not all bad. I'm not all gloom and doom about her feeding trials. Granted, I hate that I'm dependant on medical equipment to get food into her belly and that she is missing out on so many good things that food has to offer. BUT - there are many things that are really good for her.

1. She is not orally aversive. This is huge. And it is because we have worked so hard from day one to make sure that she puts things in her mouth. And we've done mouth exercises. And we've put food in her mouth - so she's used to that, even though she doesn't know what to do with it once it's in there. So, all the oral trials we've done so far (for the past 18 months) - even though we couldn't see "progress", we are now reaping the benefits.
2. She is a willing participant. Really. She is. She wants a spoon and she wants to feed herself. She doesn't seem to mind what the food is, either (green beans or bananas). Does she taste? I have no idea. She wants to "drink" the thickened water - even though that has no flavor at all. Maybe she just likes the way it feels. Maybe she just wants to be like everyone else. I don't know. But, she wants to help and that is huge.
3. She chews. I know, that sounds strange. But, when she puts a rubber toy in her mouth, she chews on it - just like she should. And chewing could have been like the swallowing. Meaning that we could have been in the situation where she didn't know how to chew. But, luckily, she chews (or bites down I should say) and likes to.

So, I just need to concentrate on all the good things we have going for us and be patient. And diligent. And energetic. Okay, maybe that's going too far. At least for the next few months. Let's just stick with patient and diligent, okay?

Take care,

Christy