Addison Update

I haven't blogged about Addison lately. So I thought I would write a little update. We had our follow-up appointment with her GI this past Monday. Since her procedures, she has been on Prevacid to help with reflux. At first, it seemed like it was making a difference and Addison was eating better. But lately, she's been back to her old, bad habits of not eating very well. And she's been sick for what seems like the entire month of August. And September hasn't been any better so far. But I degrees. Back to her GI. At this last appointment, she had actually lost a little weight. Not good. So her GI wants to try an appetite stimulant. The medication is actually an allergy medication, with the side effect of stimulating the appetite. However, we have to break up the doses, or her body will get used to the medication and it will stop increasing her appetite. So we've started that (we're on our second dose). We are also trying desperately to increase her calorie intake. We are beefing up her food wherever we can with a liquid supplement called Benecalorie. It comes in little 1 oz packages and is packed with 330 calories. The dietician said if we could get one package a day down her (or the extra 330 calories) that we would be doing good. We've been supplementing her food now for three days. Day one we did good, got the whole thing down her. Day two and three, not so great. We're trying, that's all I can say. If we don't succeed, we are looking at having to tube feed her. How horrible would that be!?!

And what about her MRI? Her MRI came back abnormal. Her white matter in her brain is under developed. At our appointment with the neurologist, he seemed really optimistic that in time, Addison's white matter would mature and develop. He thinks between 18 months - 2 years. He did schedule a follow up MRI in about 6 months. If her white matter doesn't mature, we are most likely looking at multiple sclerosis. Gulp.

As I've thought, cried and wondered about this, I've come to the following conclusion. I will do everything in my power to provide her with the best nutrition that I can for the next six months in order to feed her body and her brain. If for some reason her brain doesn't mature and grow, then it is what it is. And I will love her just the same. What else can you do? Right now, she is a joy in my life. No matter what happens in the future, she will remain a joy in my life. As someone special once said, "Come what may, and love it."