Mia visits the doctors!

This past week, Mia visited two of her doctors. One thing you never think about when your child doesn't visit a lot of different kinds of doctors is how frustrating it is listening to different doctors recommend different things. But that's what we got this week!

First, on Monday we went to see her physiatrist. She liked the progress Mia has been making now that she's taking baclofen - her elbow is looser and her leg stretches a bit more than it was. She told us that Mia could easily be on twice the dosage of the drug - she was on 30 mg a day, which the doctor said she usually prescribes to 5-year-olds. So we're slowly moving her dosage up to 45 mg a day, which, we hope, will be even more efficacious. The biggest problem with this is that baclofen tends to make you constipated, and Mia doesn't need any help in that regard. She has a laxative (polyethylene glycol), but if we give her the full dosage, it won't work for a week or ten days and then we have two or three days of messy bowel movements. So we give it to her sparingly, when she's having some issues with constipation. The doctor told us to cut the dosage in half so that we could give it to her all the time, and she also told us giving her a suppository every night will help, and I quote "train her sphincter." (There are phrases you never thought you would ever hear, and this is one of them.) The sphincter is a muscle, after all, and you can apparently exercise it so that it's not as tight. Who knew? I told her that was groovy, and off we went!

So then on Wednesday I went to see Mia's gastroenterologist. This was a follow-up to our visit in August, but by now, I'm kind of stressed out about feeding Mia and Krys and I have decided that it's probably best to put a g-tube in her. I think many of her problems stem from a lack of energy due to her low weight, and as we've been dealing with this pretty much since she was able to feed herself and more specifically for three years since her hip surgery, we're kind of sick of it. Her physiatrist told us that she has seen many kids with brain injuries or spinal cord injuries in the same situation as Mia - they simply don't recognize when they're hungry or thirsty, and they eat just to taste things. Once they get bored with the taste, they're done, whether their bodies need the food or not. Mia weighs only 46/47 pounds (she had climbed up to 49 about a month ago, but then she backslid) and she's 51 inches long, so her BMI isn't great. We're pretty much tired of it.

I told the gastroenterologist this, and she said okay - she's going to e-mail the surgeon who would perform the surgery and see when she can get going on Mia. Then she told me that giving her a suppository every night is probably not a good idea because it's habit-forming. Sigh. She also didn't think it was a good idea to halve her dosage of the laxative, because she's very keen on the prescribed dosage being used. She wanted us to give her a full dosage but give her half the drink in the morning and half at night. The problem is that Mia won't drink half of the drink in the morning - she doesn't have time and she simply won't do it because she doesn't want to. So I decided to follow her advice and not give her a suppository every night, but I also halved the dosage and will give Mia that in 8 fluid ounces every time she gets it from me. Frustrating? Why would you think that?

So that's where we stand right now. I'm kind of hoping she doesn't get the g-tube in until after Christmas, because we're going north on the 23rd to ride the Polar Express and we're staying overnight, and dealing with her g-tube would be annoying. I doubt if it will be that quick, anyway. Performing the surgery over the Christmas break would be ideal, but again, I have a feeling that's too soon. We'll see.

I'll write more about a feeding tube as it gets closer to the time when we're going to have it put in. Opinions are mixed among Mia's therapists and doctors about the need for it. I know, it's shocking. God forbid they agree on something!