Advocacy

Happy Wednesday....it's happier than Monday and Tuesday, anyway!  As you can see, Benjamin is sitting up some today after sleeping away much of the past 2 days.  He was rather determined to find a button on the IV pump that would provide music with the light show.  I have to watch that boy!

I had the nurse call me at 5:30 this morning and by 5:59 I was rolling out of the parking lot, heading for home to have some time with Krissy before school.  Benjamin was asleep when I left and I knew Larry would be over when he finished work.  I got home and I think the 'normal morning' routine was helpful for Krissy.  She's been pretty edgy and I think the change in routine with my being in the hospital, etc. tends to amplify her issues.  We had a good time...she got in the shower and got shampoo'd without a fuss.  She wanted to go to Chuck E Cheese (again) today, but she already got to go on Sunday.  I did tell her that Daddy would take her out for ice cream tonight, so she is happy to have that to look forward to.

On my way back up here, I dropped about 40 lbs of gummy bears off at my friend Teri's house to package up for the show Friday night (Thank you!!)  Such a relief to have that taken care of.  With Benjamin's illness, we weren't going to be doing any food repackaging at our house anyway, even though we wear gloves to do it.  I was in the car coming back when Larry called and said the pediatrician's had just arrived in Benj's room and wondered if I wanted him to put them on speaker phone.  Ah, the technology.  But I said "no"...it felt alittle overwhelming to try and do that and drive at the same time.  Good thing, because he told me when I got here that they suggested putting an NG tube down to feed him.  I said "did you tell them 'over my dead body'??"  This is NOT going to happen.  Benjamin always knows when he feels like eating and he'll do it when he's ready.  Then they ordered a GI consult and the MD hasn't been in yet, but I hear they want to do a barium study tomorrow at 9;30.  Probably not.  He acts like he has a stomach bug and he's starting to get better.  I really don't think forcing a bunch of barium down is going to improve the situation.  Anyway, you can pray for me as I have a calm (deep breath, Janelle) discussion with this doctor I've never met before, sometime this afternoon.  Advocating for Benjamin is a difficult role to be in sometimes...I want to be reasonable, but sometimes I think they just come up with things they can order so they feel like they're doing something.  I'm good giving him a little more time to come out of this.  But pray that I'll have wisdom and respond like I should, even if that means needing to be open to something that I don't like.  He's showing some real improvement today, so thanks for keeping the prayers going.  We have been so blessed by our CYT family...one of the moms (she has 4 kids in the show, so not a bunch of free time this week, to say the least) orgainized a 'meal drive' for our family...frozen meals for us to pull out in the days ahead.  One family sent a wonderful meal home with the kids last night.  I've been moved to tears by their love and care for us during this very busy time for them too.  Will let you know how things go.  Love, Janelle