Jan. 10th, 2009

Brrrr………..it’s a bit cold and has been for some time. One could say we are living in the frozen tundra but we are nice and snuggy warm in the house. Glad the holidays are over. Life is back to “normal” or a distorted version of. Danielle has been pretty well. She’s been having funky temp issues again but that’s nothing different. It seems like once a week she’ll run a temp around 102.5 then it disappears into thin air but then will continue to run a low grade one. The nurse on staff today gave her a nice spa treatment included with the warm bubbles were a mani/pedi and a nice pretty scented lotion rub down. Her eyes were open for most the day today which is a bit unusual. I take her this coming Friday down to Children’s for her feeding tube to be changed out. This is one appointment I get so frustrated with. There is not another hospital closer to us that can do the placement yet it only takes 5 minutes at most. When she just had the g-tube I did the change outs at home myself. But since this is a g-j the IR dept needs to do it because they have the microscope to see that they are in the correct position of the intestine. A 2 hr drive down there for a 5 minute appointment with a 2 hr drive back. Oh well, there isn’t much I wouldn’t do to keep my princess comfortable. Besides maybe we can pop in on the one and only fabulous doc down there, we’ll see. Maybe we should stop in an see the cardiologist that predicted her death over Halloween. I’d really like to talk to him to get more understanding of some things. Chances are that won’t happen cause they are sooooooo busy even with appointments but it’d be nice. There is a new movie coming out, I’m sure most of you have seen the commercials for it. Extraordinary Measures. It’s about a father’s journey to finding a cure for Pompe disease which afflicts both his daughters. Pompe disease is a lysosomal storage disease just like MLD. I’m looking forward to seeing the movie although I KNOW I will be crying before the previews even start. LOL! Truthfully it reminds me of Dean and Teryn (founders of the MLD Foundation). What a story to be told. While Lorenzo’s Oil is a great movie and again very much like MLD, the times have changed so much and research has as well it’ll be interesting to see if this movie will reflect that. Not much else to report other than to ask for prayers for Emily. One of Danielle’s MLD sisters. She’s pretty sick and uncomfortable. Praying for comfort for her and her family.

Thanks for checkin’ in on Danielle

Love, Megan