Sick little girl

Sofia has had some kind of bug for the past few days and so did Daniel.  To help her get better she is getting nebulizer treatments as well as her vest treatment which loosens up her mucus and secretions.  Now that she is trach-free, she can't just be suctioned to remove them!

On her own

CHOP has basically declared victory on her airway. Her next scope won't be until the fall. This is great news but of course it means that Sofia won't have as much nursing. Right now we still have nursing in the night because of all of the feeding issues and monitoring needed, especially so close to her surgery to prevent any reflux or other issues. So Sofia had to go to school today on her own and have class without a nurse following her around. Of course Daniel as there to help out. Sort of. She did great!

First Sail and Update

For the 4th we were lucky enough to take the family on a friend's boat to sail around the sound a bit. Just for the afternoon. Both kids really enjoyed it although Sofia was antsy at first. Daniel was really good throughout. However after stopping for lunch, both kids promptly passed out on the way back! Sorry no pictures, we'll take some next time! Sofia had a swallow test with her feeding therapist, her first since her last surgery. She did pretty well although is out of practice. We're speaking now to CHOP to see how they want to proceed but the results were encouraging.

Patriotic kids

The kids are all ready for the 4th!

Unfortunately Sofia fell off the couch yesterday and had to get a stitch. She was jealous anyways of Daniel's special trip and was missing her friends at the hospital.  She wouldn't sit still for more than one stitch even with three people holding her down.  She's fine now so one was enough!