Crazy Week

Today Lucy had her first appointment at the new children's hospital with her new psychologist.

The facility is great, much better than before. The waiting room was bright and clean. The room we had our appointment in was spacious, as compared to the closet she used to have her appointments in. Other than a parking snafu that forced us to walk a couple miles, I can't complain.

I think I like the new psychologist. She was enthusiastic and assertive. Which is a combination Lucy needs. She also seemed focused on helping Lucy gain independence emotionally.

Right now Lu struggles with grief over her situation on a daily basis. She can range from sadness to rage, and this goes on just about everyday. We do our best to validate her feelings and let her know she is being heard. But its difficult for her to identify her feelings and find better ways to express them at this age. The psychologist wants to spend some time working one on one with Lu to help her learn to identify her emotions and ways she can cope.

This Friday Lu has a tube replacement scheduled.

Her g-port has been giving us a hard time with draining, which is not helped by the fact Lucy has been stealing again. She got a hold of a chocolate cookie last week and it took over 24 hours to leave her stomach. So when the food is combined with a malfunctioning tube, Lu can't be vented and she ends up throwing up in her mouth and just overall feeling very uncomfortable and bloated. Her stomach has become so slow that draining as much as is possible is essential to keep her comfortable.

Friday will just be a simple replacement, which still involves sedation. We should be in and out within a few hours time...I hope! Once she has the Roux en Y procedure, we wont have to keep going through this replacement circus act. But for now, we will deal and just pray for a complication free replacement this one last time.