didn't remember until i picked up the diuril that you are supposed to avoid exposure to the sun while on it--i remembered as soon as i saw the bottle from when melanie was on it before. i called the light therapy office to see what we do about it. they said, "she HAS to have the light therapy as nothing else is working and her skin is in such bad shape." so they called the nephrologist to see if there was anything else he could put her on. he said she REALLY needs the diuril and it is the best choice of medicine for her. so, being she really needs both the medication and the therapy, but they contraindicate each other--we are going to do both and be very careful. we had to turn down the level of melanie's light exposure (and duration of time) in the uv light box. diuril makes the skin more sensitive to light and will burn more easily, so we are just watching her close. she had her first dose of diuril on thursday then lower-dosed light therapy on friday. she didn't burn, so that's good. we are going every monday, wednesday, and friday; unfortunately, we are seeing no results. the condition of her skin is not improving and, if anything, it is getting worse. she frequently has spots that are open and bleeding. she has an area on her face and one on her belly now. she has also developed a yeast infection around her gj tube. hoping that does not spread to infect all the open sores on her skin.

one affected spot on melanie's face

open, bleeding spots on melanie's arm (there is cream on it)

melanie in the light therapy box with her "fishy" goggles

melanie in front of the light therapy booth with 'pinky' the puppy

waiting for light therapy watching video on demand

working on a puzzle while waiting for light therapy

here are some pictures from kids day america from last saturday:

couple pictures from thursday when i set up the sprinkler for ethan:

my dad and scott dug the holes for our deck today. the first three gave them quite a hard time with rock and clay. a lot of back-breaking work. the last two were nice black dirt, and they zipped through them. some pictures of the work:

melanie watching them work.

not much else to update. hoping to get some answers and help from melanie's neurology appt on monday. also anxious to see how her liver functions are doing after the jump last week. during some tummy pain today her face became flushed and her temp rose to around 100. she used her TENS until which she has tried in many, many months. she kept it on for quite a while and eventually she said she felt better. her face was no longer flushed, and the low-grade fever was gone. hoping she will start using (and getting some benefit) out of the TENS unit again--gives us one more tool to help her when she is in pain.

brandon had a headache everyday this week except friday. he was getting motrin too often, worried about rebound headache; so we switched to using tylenol for the "low pain scale" headache days. tylenol had not been effective previously, but we had been waiting until it was worse then. now we are trying to treat it right away. he had a headache again tonight. i talked to his pediatrician this week. she had given a few options but i was hoping it was just a bad week and would get better. we'll have to decide if we go to neurology, start a different prophylactic medication, do head imaging, etc. i'll have to talk with her on monday because the school is wanting a more specific protocol as to when to give tylenol versus motrin versus imitrex and at what point is it too many days of motrin. we have a "rough" protocol (tylenol for headaches 1-4, motrin for headaches 5-8, imitrex for headaches 8-10). however, if he has a number 5 headache three or four days in a row--that is too many days to have motrin (causes rebound headaches). so we will have to get that figured out.

our big porch swing thing fell over and landed on ethan's head last night. of course head wounds bleed like crazy, so he had lots of bloody, matted curls. the actual cut looked a couple inches long at first, but when i finally got the bleeding stopped and some of the blood cleaned up, it's only about 1/4 inch. the edges aren't totally closed, so it bleeds a little off and on; but he seems to be fine. brandon sure felt bad for him and was in tears after seeing all the blood.