Monday, August 23, 2010

State Fair and Updates

We are so proud of Elena for having two projects make it to the state fair this year!  Saturday our family headed down to Indianapolis to check things out.  We had a great time, and the cloudy weather kept the temperature cool.  Sadie did well.  She even slept through our trip through the hog barn.

Sadie saw Dr. R last week.  Her left kidney is progressively dilating.  Dr. R doesn't think her kidney is any acute danger but he does not want any further delays with her surgery.  We have increased the clean intermittent caths to 2-3 times per day, since he thinks her full channel is pressing on her left ureter and causing urine to back up into the kidney.  We have more imaging studies on Sept. 10 to see if things are improving.  We have an appointment with the surgeon tomorrow at Riley North. 

PSARVUP in 8 weeks!

Sunday, August 15, 2010

"She's your sick baby?"

We hear that question all the time.  Sadie looks so great that sometimes it's easy to forget what she's been through, and will go through.  It's been awhile since we've posted any pictures, so here's some of our favorites.

Sunday, August 8, 2010

A Week of Firsts

This week has been an emotional roller coaster as we've had to face new challenges in Sadie's life.  This week Sadie got sick with vomiting and high fevers.  Now, we realize as parents of an infant that we are lucky to have made it this long without her coming down with anything.  But she's not a typical infant, which made it scary.  Unfortunately, this led to Sadie's first readmission to Riley.  She'd been sick since Monday, and then on Wednesday she started having stool coming out of places it shouldn't have been.  After contacting the urologist on call we headed to the ER and Sadie was admitted at about 4 am on Thursday.  Sadie had a PICC line placed on Thursday afternoon once the surgeon decided a trip to the OR wasn't necessary.  She spent two days receiving IV fluids and antibiotics.  We came home yesterday afternoon.  We now have to in-and-out cath her once daily and we can no longer put a pouch over both her colostomy and mucus fistula, which makes it difficult to keep the appliance on for longer than a few hours.  She's also now on Septra as her chronic antibiotic, which is a change from the Amoxil she was on.  So for now, we just have to get through the next 10 weeks until surgery without any further setbacks.

On a lighter note, Sadie also got her first tooth!  She's completely obsessed with rubbing her tongue over it and she tries to hide it when we attempt to peek in her mouth.