dancing with the stars

So, this past week, Rachel had several appointments. Per advice of the physio therapist, a stander has been ordered to help her with weightbearing. As ugly and yellow as the stander might be, it will hopefully help her feet and legs to hold her weight. It's on wheels, so we will be able to dance with her. This is important because Emily and Sophia in particular like to dance their stress away. Wait til you see the pictures!

We also discussed with docs at Mac whether or not Rachel should get a portacath. After some deliberating, the procedure was postponed until deemed necessary. Right now, it is almost impossible to find a vein in Rachel's body for bloodwork or IV access. This is a problem in the winter months when Rachel is ill frequently. A portacath can be surgically inserted near her collar bone to allow for easy access. But.. this access comes with some risks, and it was determined at this time that the risks outweigh the benefits.

Janneke is dealing with her second cold. She is sleeping well, but we are suctioning her nose frequently to help her manage the extra fluid. Crazy spring colds! What is interesting is we are seeing her react to the suctioning and the cold as a "typical" baby would. The tears and fussiness, as frustrating as they may be in the middle of the night, hold hope for developmental progress.

Here's a few photos of the last few days. The first photo shows Janneke receiving the soother - called oral stimulation - during a tube feeding with the hope of some day re-introducing the bottle.