Medical Management

I decided this deserves it's own section.

The pump  They aren't all that big.  About the size of a cell phone.  Unless you are four.  Then they are TOO big and hurt your tummy hanging on the waistband.  Mom fixed with a fleece pocket (lovely pink BTW) attached to a tank or camisole.  I have a big reinforced hole in the back so the pump can be pushed through and the medication tubing is safely out of the way.

Modeling the look

Detail shot.  We have it clipped into the pocket

Figuring out how to manage all the in's and outs of the new medication pump has taken a bit.

Most difficult is putting a new port site in.  We won't talk too much about that one.  I've done it twice and I don't think I will ever enjoy it.  Josie is NEVER going to enjoy it.  But we are getting better at it.

We have learned to change the pumps out fairly well.  Josie was fairly panicked the first few times and she would wiggle and thrash.  Not helpful.  But BaBa worked with her and she is now able to cooperate and help us do the changes.

Dollie has a site, a button, and a pump of her own.  Part of working with Josie on the process.

Hardest is the bathing.  It never occurred to me that one of the things we would give up when we moved to the medication pump would be long baths.  Right now I wash her hair in the kitchen sink to keep the equipment and pump dry, then she has a little bath either in the sink (good thing she is skinny) or in the big tub - but never with JJ because we can't have her site or equipment get wet. . .  and JJ loves to splash in the tub.