Stuff

So, we had the evaluation today to determine how many hours of nursing care we qualify for. We qualify for 12 hours of nursing care a day. It's pretty weird (and scary) to know that we have a situation that requires that kind of care. Now we just have to figure out what kind of schedule we want. Then we have to find the nurses to fill the positions and hope that we are a right fit for each other. The coordinator said that most of the nurses like babies, so maybe that will make it a little easier (I hope!)

Tomorrow we have another pediatrician appointment. I think we will have those weekly for quite a while. Then in the afternoon we have our first cardiologist appointment here in Richmond. I am anxious to see what he has to say. I am getting a little concerned about the oxygen situation. Now it seems we can't take her off. I hope that doesn't mean something bad is going on with her heart. Hopefully he can reassure us a bit.

I also spoke with the county regarding the occupational, physical and speech therapy program. They are coming out on Monday to start that. I am anxious for that, too, (well, clearly I am anxious for everything) because occupational therapy will help us with trying to feed her by mouth. I am not expecting much, because in order for her to pack on some weight, we need the g-tube - for now anyway. Other than the developmental delays not eating by mouth causes, I would like to have one less tube to have to deal with. It is a pain with her baths (can't get it wet until it completely heals) and it is a little awkward with her clothes. My mom put some button holes in her clothes for the tube to stick out so that should help. Until she did that, Harlie could only wear button-up clothes, which surprisingly, is pretty limiting.

Well I spoke to the mom of the little girl that had a trach today. That was such a great conversation to have! As it turns out, her daughter didn't have to have the expansion surgery as I thought. Just her normal growing opened up her airway enough to remove the trach. That's even better news! There are definite negatives with doing that kind of surgery at such a young age. So, hopefully, it will happen on its own for Harlie, too.

Well, it is getting late and it is time to get Harlie upstairs. Take care and talk to you soon!
-Christy