Day +63, Big Day

Today was a big day in clinic. Lots of changes to Olivia's medications but we're moving in a positive direction. We are now officially off of all IV meds! At this point Olivia is taking 7 oral meds. For those of you keeping track she's on Acycolvir (an anti-viral med), Amlodipine (for high blood pressure), Cellcept (an immunesuppressant which prevents rejection), Enalapril (for high blood pressure), VFend (an anti-fungal med), Prednisolone (to prevent rejection), and Tacrolimus (to prevent rejection). She's also taking an anti-heartburn tablet and a multivitamin. Now that she's made the transition to oral steroids we're hoping that we'll be able to start decreasing some of her high blood pressure medications (she was starting to have high blood pressure as a result of the high dosages of steriods that she was receiving). Some big changes were made today and I'm hoping that Olivia's little body can handle all of it.

The doctors seem impressed with Olivia's progress. She's producing blood and platelets all on her own. Her electrolites and blood chemistry are looking good meaning that her body is efficiently and effectivly processing the food that she's eating. Her sodium and magnesium levels are really good and her digestive system seems to be working really well. In fact her digestive system seems to be working even better than it was before. ****Gross alert**** Kids with Sanfilippo syndrome often have frequent and loose bowl movements. Prior to transplant it was not uncommon for Olivia to have 3-4 poopie diapers a day. Now even with all the antiobiotics she's on Olivia is only having one poopie diaper a day or sometimes just one every other day. And they're nice firm stools, no loose bowl movements around here. It's a little thing but as the primary diaper changer I am thrilled. ***end of Gross alert***

All in all it's a big day. Tomorrow I'm meeting with Olivia's teacher here to make sure that her educational needs are being met. I'm hoping that they will be able to make arrangements to have a teacher come work with Olivia here at our apartment. We'll see how that goes though.