Wednesday, March 11, 2015

Planning For Denver (Part 2)

So, I'm working my way through reading other people's journeys.

Today we found out Vinnie has to be off of his Doxepin for 1 week prior to the program.  Which means he won't be on it for our flight or visiting family.  This gives me a lot of anxiety & I plan on talking to his doctor's tomorrow.

I'm also going to attempt to do a wet-wrap routine at home with Tim's help this weekend.  I want to try it with cotton clothing & see how his skin does.  He doesn't do well with cotton long term--but the wraps apparently only stay on for 2 hours at a time.  I want to see if he can tolerate the cotton clothes, because if he can, that changes how we pack/shop for the trip.

I got a lot of paperwork done today.  I also got a discount towards t-ball, so Lucas will still be able to play, even though he'll miss a whole month.

I need to make a bath toys bag.  Something we can carry back & forth to the hospital to keep all his toys in.

I also need to buy new jars of CeraVe and Vanicream.  And refill his Elidel.  And Triamcinilone.

I need to ask Sarah (our coordinator) about these "nasal rinses" that I am reading about on the blog.  I think its probably something similar to a neti-pot and if so that's scary. I have no idea how Vin will do with that.

Basically, learning more about the program is just SCARING the CRAP out of me. :(

While the parents are in classes/meetings/therapy where are the kids? Do they have a day-care type play room? I'll be alone with Vin at the hospital.

Do we get to use the same hospital room each day? Or do we have a different room? Do we have to carry everything back & forth?

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

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