More on Emily

So the new news on Emily...for a couple weeks now she has been doing what we call "bobble head"...her head bounces around like a baby who is just getting neck control. In fact, it looks like she is trying to look around her glasses in order to focus. The advice we got was that it was visual (she needs a new prescription).

So, we finally got her in to the ophthalmologist today and he took a look and decided that her prescription is fine. What that means is that it is most likely one of two things: something-something triad (sorry forgot the medical name) which is a condition where a child has a head tilt, head bob, and nystagmus (eyes bounce back and forth) or it is neurological.

If it is the triad thing, she will outgrow it by the time she is seven. Seven? Yes. She shows all three but they are not very pronounced (you can only see nystagmus when one eye is covered) so he is hesitant to declare with confidence this is all it is. If it is neurological, it could be caused by a number of things but they would need to do an MRI to take a look at her brain. So, we are headed in to see the pediatric neurologist sometime in the next couple weeks.

He also noticed that her dominant eye is becoming more dominant and her weak eye is becoming weaker. Thus the patch on the eye. We are going to patch her good eye for two hours a day for the next month until he sees her again. Look at that sight! Her face is just getting worse and worse! :) What else can we put on her? Maybe a nose ring? No, we don't put her oxygen on at night anymore...kind of impossible with the feeding tube, plus she doesn't leave it on. We just pray God will keep her breathing all night.

Her eating is still not going well. As you can see, she is back on her ng tube. Her pattern is to go about five days on it, do really well, so we take it out, then she does great for two days and steadily declines until we put it back in about a week later. She wants to eat so badly, but she gags on everything.

I want to get Plumpy Doz (a nutritional supplement by Nutriset that tastes like peanut butter and is used for toddlers in third world countries and they only have to eat 3 tablespoons a day) but apparently you can't just buy it. I know she would eat it because it is puree. Sad!! Seems to me to be a better solution than a g-tube.

Anyway, hope you all have a wonderful day! We are just trying not to float away in the rain...our county has already been declared a disaster zone and it is supposed to get worse starting tomorrow. Thanks for your prayers and God Bless!!