Two weeks and counting...

Well, today was another busy day. I don’t know how that happens. It appears that my calendar isn’t that full, and the next thing I know, the day is over.

We had our pulmonary appointment today. It went okay. The worst thing about it is how long it takes. We left the house before 1pm and didn’t get home until a little after 5pm. We did see my favorite nutritionist. She had not seen Harlie in a while and she said she was really happy with her weight gain. She weighs 14 pounds, 13 ounces and she is just over 26” long. I was hoping for 15 pounds, but it looks like that is right around the corner. Woohoo!!! She certainly feels heavier, which feels wonderful when you’re carrying her around.

We are going to leave her on the Portagen formula until after she fully recovers from lung surgery. And as long as she’s on Portagen, we will remain at continuous feeds, 21 hours per day. I’m pretty used to it, so it doesn’t really matter to me.

I think the pulmonologist was a little concerned. Harlie is working harder to breathe now than when he saw her at the end of May. He prescribed Pulmicort breathing treatments twice a day. I don’t know much about it, but I think it is a steroid and it is often used to treat asthma. I think he was thinking it might help with her secretions. We've tried two other breathing treatment meds, but neither has ever made a difference. I think it is just the inefficiency of her lungs, and the breathing treatments aren't the solution for that.

I am still working on her oral feedings. Really, they are called oral trials. There’s not much “feeding” going on, that’s for sure. I think I mentioned before that our goal is to show her that food tastes good and we want her to learn to anticipate a bite, opening her mouth willingly. Hopefully we’ll trigger her swallow reflex at some point. And I know it is so far fetched, but every time I put some food in, I will her to swallow it. One day she will and I will be the happiest person on the planet!

Well, tonight during her evening trial, she opened her mouth for the syringe! I was so excited! I think that is such a big step. And there were 2 bites that I didn’t see the food come back out. Now, that doesn’t necessarily mean she swallowed. She does have the ability to hold several bites in before her mouth fills up and then it all comes out. But, when some did come out, it really didn’t seem like enough for all the bites.

And I know this all sounds weird. I’m sure some of you are wondering how in the world we can’t see what’s going on in her mouth. But, Harlie has a very small opening. Because she is missing some bones on one side of her jaw, it doesn’t open straight up and down like normal. You can really tell when she yawns – it is very crooked and hardly opens. At her most open, you can barely see in there. And then if you can see, her tongue is usually rolled towards the back. In fact, for the first time, I saw her tongue today. We were suctioning out her mouth and she was feeling the suction with her tongue. So, I’m hoping we’re making some really good progress there.

Well, that’s about it for today. Two weeks from right now and her surgery will be over!!!

Take care,
Christy