July at home

Untitled-4smIMG_2555smHere’s Lucas’s expression the moment I tell him he forgot something: his pants!! 🙂IMG_2299sm

Fun at the Discovery Museum: I’m so impressed with her improving movement and strength! She was unable to sit without supporting herself on her hands just a couple of weeks ago!

Untitled-7smLook! She can stand! Good work, Sophie!IMG_2345sm

This is how Lucas plays t-ball:
Sophie’s liver was struggling a bit since she’d been on IV feeds for some time now. We scheduled a visit back up at Children’s National to give the nasal-jejunum (NJ) tube another try. It was going fairly well, but her GI tract sphincters are so weak now from the  chemo damage to her gut that the tube came out very easily and we were done after just 2 days. We will just have to wait for her gut to heal on it’s own and hope that it will begin to absorb calories and nutrients again as we get further and further away from her last chemo. Hopefully we can accomplish that before the liver enzymes get too too high.


Here’s where we found out Sophie has an adhesive allergy. Good thing her tube came out when it did! The unirritated skin in the middle of the red area is where the NJ tube lay.


We got to visit with the music therapist while waiting for the long beaurocratic discharge process to complete:IMG_2398bUntitled-3sm


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