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Preparing, preparing, preparing…

Posted Mar 30 2011 3:03am

17 days until we close escrow on our new house.

25 days until we leave for Florida and the trip of a lifetime.

About 45 days until we move from our rental to our new home.

So much to do.  It is crazy!   Today I spent time working on the medical support part of our Disney World trip — specifically requesting documentation from Hannah’s pediatrician so we can transport her 8 liquid meds and formula on the flight, discussing the needs for our nursing company to have documentation from our pediatrician so that we can temporarily suspend service for that week (and not have a nurse) so that we don’t lose our nursing, and also trying to coordinate our nursing schedule before/after our return.

It also figures that Hannah’s cerezyme treatment lands smack dab in the middle of our trip, so trying to get that rescheduled so that she doesn’t go more than 2 weeks (and a couple of days) is becoming a bit more difficult than I thought.  At first, the scheduling coordinator set it up so that Hannah would have 3-1/2 weeks in between infusions because “they are booked up” — and that is just being dangerous for her!   I hope that there is some resolution because I don’t want her to lose that much time without her treatment.

Also set up a lot of appointments today, early intervention OT, dentist for all three kids (who has experience with special needs kids), and talking to Hannah’s medical supply company about shipping some of her supplies to the GKTW village (especially her formula – 40 bottles!).

I am also working on coming up with a list of rides that Hannah would be safe on.  She really is “medically fragile” and has so many restrictions that we have to consider.  Right now the only ones that are a ‘go’ are Small World and Jungle Cruise, and that is only because we went on them in Disneyland so I know how they go!   Fortunately I am getting help from a good friend who is a WDW expert and others on a Disney board on this so I hope this list increases by just a few rides.



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