Home

It's good to be home. After a long and exhausting week in Philadelphia, we are home and things are getting back to normal. It's funny how quickly the week came and went. Plans and preparations had been in the works for months, and then suddenly it was here. And although I had high hopes of it being a little bit of a getaway, I let my nerves get the best of me, and I stayed pretty stressed until the very last test was complete. Thankfully, my stress was unnecessary. Maddie did great on all of her tests and evaluations! We still need feedback from her MRI, which we will review with our local neurosurgeon next week...but our study coordinator assured us that no news is good news, so we were glad a consultation was not required after the MRI. The only results that were slightly bittersweet were from urology. Her renal ultrasound showed no kidney damage or reflux, and the urodynamics showed that her bladder is emptying...however, since Maddie just recently had her first UTI, Dr. Carr advised that if she is to get another UTI, it is his recommendation that we begin cathing. Bummer. I had a feeling that UTI was gonna be a problem. I know that cathing is seemingly inevitable for most kids with SB, I am just hoping to put it off for as long as possible. I guess part of me is still holding on to some hope that she may be capable of potty-training one day. It's another "wait and see", and so we shall...




Mason had a great time at my parents' while we were away. We didn't want him to feel left out of anything, so we really played up the idea that this was his special week at Mimi's, with lots of treats and surprises. He totally bought it. He was super excited each day when I called him. He would tell me all the places they were going, and the things they were doing. They went to the zoo. They fed ducks and climbed trees at the park. They went to Chuck E. Cheese. They played in the water spouts at the playground. They spent a day at the pool. It was something every. single. day.



I didn't think he'd want to come home. He did. :) I think he missed us just as much as we missed him. And Man, we missed him! I held back tears when I saw those ball mobiles in the atrium at CHOP. Mason spent hours watching those things last year when Maddie was born, and the sight of them made me want him there with us.

Here he is a year ago at CHOP....Oh man, where did that little guy go?







But it was definitely for the best that he stayed here...the hospital schedule was brutal, and the hours afterwards were spent letting Maddie catch up on her naps. Not much time for anything in between...


It was great being back there...We saw old friends, and made new friends.

Jamie, our study coordinator...




And our new, dear friend, Kelly...




And things went better than I could have hoped for...but, it's still good to be home.