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