Today we decided that it was time to bring in the Big Girl Bed. We've been holding off because of the feeding pump. Our fear is that she will try to get up and walk away from the stand, pulling out the G-Tube out and winning us a trip to the ER in the middle of the night. Other parent's that I correspond with through KFA said that the kids learn very quickly that they only have so much slack before they need to stop and reassess the situation, even at this young age. I'm nervous and I'll probably camp outside her door and fly in at the slightest noise. We took Chris and Angie's advice and tried it with nap time first. She didn't nap, but she did stay in the bed and look at her books. We let her tuck in her whole posse of stuffed animals (she nearly doesn't need a guard rail, they are piled so high!) and practice climbing in and out. My monitor will be cranked to full volume tonight!
I think we also have good news on the intestinal front. I'm hesitant to say it, but I believe I saw a "normalish" diaper today. Since we started the budesonide again, the mucous has cut back though it still has a bit of rusty tint. I'm sure it's going to take more than two days to stop the bleeding but this is a start! It looks like we took away the one med that was keeping things between the navigational beacons. We took away the gut-candy and it has been throwing a tantrum ever since.
She helped Daddy put her Big Girl Bed together
She may not get her ABC's in the right order, but she can name a screwdriver AND a pipewrench!
First try
2 comments:
Ok I didn't even know you had this page! Walmart has a play toy set with a power drill that lights and turns, 2 screwdrivers, a wrench, and a hammer.... get it trust me. Henry "helped" change his bed to a big boy bed then I bought him that and its his favorite toy.
Congrats on the big girl pants and the big girl bed! That is exciting. What is this I read about compassionate reassignment? I read the title and almost cried... when and where are you going?
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