Treatment photos

 Today I wanted everyone to be able to see what her treatment looks like. It's so much better than the IV treatment. Next week they are adding 5 mls to her dose. This is the last increase before they have to switch her pump. Each infusion takes about an hour, and we do this once a week. She is getting used to it. She is really good about letting me put the needles in, and about not touching the pump or the tape. In the beginning it took two people to get the treatments started. Now I do them by myself.

This is how I apply her numbing cream. She doesn't like the way this feels. I'm not sure if it's the clear bandage or the cream. The cream stays on for at least half an hour. It usually ends up leaking at least a little bit.

While the numbing cream is working I gather all of the supplies. We also have a sharps container, but I don't keep it in the box anymore, it takes up too much room. Because she's two she loves to try to take some of the stuff when I'm busy with other things. She especially loves the little glass bottles.

These are the needles and tubing. The plastic pieces that are shaped like a butterfly are what I hold to insert the needles. We just switched to 6mm needles because the 4mm needles were leaking. I'm experimenting with different kinds of tape to hold the needles in place. I prefer the clear plastic because I can watch her reaction, but paper tape is easier on her skin.

This is her during treatment. The strap around her neck is hooked to her pump (inside the grey bag) and the thing she is holding is the tubing. I roll it up and tape it to keep it out of her way when she moves around. This is the easy part. About half an hour into the infusion I think she starts to feel the pressure of the liquid, and she gets pretty fussy.

This is a few minutes after treatment. I don't think the picture really captures it well. It's raised a little more than a quarter of an inch. I give her benadryl after her treatment and the swelling is gone in about 4 hours as her body absorbs the medicine. It's the equivilent to getting a shot, but instead of using a little bit of liquid each site gets 7.5 mls. That's a teaspoon and a half. Next week it goes up to 10 mls per site. If her reaction is bad they may let us use 4 sites.