Doctor Appointment

Lucy had her appointment with Dr. G as well as our nutritionist, just to check in on things and to see how we are progressing.

Her weight came in at over 28.5 lbs! I was thoroughly impressed, however the nutritionist was NOT. She pointed out the fact that Lucy is still down from her weight in November of last year. The nutritionist still feels that there is much to be desired in the nutrition department for Lucy. There just isn't much that we can do about it so, instead, Dr. G and I celebrated the weight gain!

Dr. G thinks that Lucy may have a bacterial overgrowth of the intestines causing a lot of bloating and diarrhea. When things move SO slowly through the intestine, bacteria levels build up and over populate which causes a lot of problems. Its almost a given that this sort of thing happens to a person with a small intestine moving as slowly as Lu's. We are going to try to treat this overgrowth with a rotation of antibiotics for several months. I am a bit nervous about whether or not she will tolerate that, so I am crossing my fingers.

Next, we moved onto discuss Lucy's pain issues. It's become a daily issue that wears her down and out. Dr. G explained that Lucy may have Visceral Hyperalgesia which can happen in children with severe motility disorders. Basically, the very stretching and movements of the GI tract that the rest of us are unaware are happening in our bodies, cause, what the brain perceives, as pain. He couldn't offer much in the way of treatment, other than to continue venting Lucy's stomach through her tube to prevent air buildup and formula backup. I'm not terribly pleased with that offer, so I have a good feeling this is an issue we will be revisiting down the road.

We also discussed some of Lucy's psychological issues in dealing with all the pain, formula only diet, and constant doctors appointments and tests. He referred us to the behavioral psych program at the hospital that is dedicated specifically to helping with children who are struggling to deal with medical conditions. Dr. G felt that Lucy really needs to start seeing someone that can help her to communicate her pain, learn how to cope with that pain, and all the anxiety and anger that comes from being a kid in Lucy's situation. It's certainly depressing to know that your child's burdens have become big enough that she needs help handling it all. She'll be okay though and we will help her through it. I would much rather build good habits for handling anxiety and anger now, then wait until shes older, depressed, and set into a way of lashing out.

Lastly, we discussed our hopeful trip to Ohio. Dr. G said he received notice that our case is to be reviewed, but nothing further than that. He's eager to hear back from Ohio for multiple reasons, one being that he wants to know whether or not it would be useful to operate on Lucy's small intestine. Hopefully, we will hear soon.

Thank you for checking in on Lucy!!