Lily's Home

Lily and Phil got home a little while ago. We gave her her first at home round of meds and I'd have to say preparation is fairly intensive, but the ease of administration makes it worth it. Later on we will begin our first at home feeding. We have a pump that comes in a little backpack- so later when Lily feels like hiking- we strap it on and off we go.

So there are attachment tubes and we pop off the little cap thing there, and twist the tube on and then we can give meds through the tube or hook it up to a pump that will deliver pediasure overnight. She is supposed to get 900 mL of fluid over a 10 hour period, which Phil and I agree will most likely lead to vomiting- so we will have to see what rate she can tolerate. It just seems like an awful lot for her little belly. We'll see.

Lily is wearing around Kiera's old tap shoes and has some pretty impressive tap moves. I guess she was watching an old Shirley Temple movie at the hospital earlier, she thinks the shoes are a special gift.

So Phil and Lily spent the night Thursday night because her treatment wasn't done until after 7 and we had to be back by 10am for the next one. Since she hadn't actually received a tube feeding either, we figured that was something best attempted under supervision the first time. They had been up since 3am, after a little pukefest , Lily decided she was up for the day. By 6 am Phil was dragging and was attempting to snooze. Lily kept asking him to play Barbies. Even when she feels really really bad, she likes to play Barbies. When she feels bad you merely have to hold the Ken doll- who is called Prince Elise(don't ask-he isn't allowed to wear clothes either- it doesn't matter how cold he is) and every now and again ask a question or say hi to the princess Barbie. So Phil has his eyes closed and asks Lily to let him rest a few more minutes and then he would play with her. And then he hears a beep and one of the nurses comes over the intercom- can I help you? She had pushed the call button-And then Lily's little voice "will YOU play Barbies with me?" And the next thing he knows is the aide is in the room asking if Ken has some clothes he could wear, he's getting cold....