Getting into planning mode!

I spent much of my time today figuring out how to get all the equipment we need for to Florida.   For some reason, the rest of the normal travel packing seems like a piece of cake so I haven’t even started that yet (except for my list).

I was trying to find where we could rent a stroller-wheelchair (like an Otto Bock Kimba Spring), get supplies to Give Kids the World, fly on the airplane with Hannah, etc.   I sent about a dozen emails and made a few phone calls to equipment rental companies here in Vegas and Florida with no luck on that stroller (or something similar with the support we want).

I received my first “Phew” email response from Give Kids the World.  We are able to ship supplies ahead of time (like two cases of Hannah’s formula plus other stuff) directly to Give Kids the World!  Not only that, but they said they get deliveries daily from our medical supply company, so we can also have them send the stuff directly!

Then I got another email this evening from our Make-A-Wish coordinator who told me they are working to get us the portable oxygen, flight safety harness, and other questions I had.   I was taken aback because to me this is above and beyond the “call of duty!”   They really are working to help us make this trip as seemless as possible!

The only other equipment we need to get is a bath chair for Hannah, but I think once we have that and the portable oxygen, we should be good to go since we will be bringing our own suction equipment.  We aren’t going to bring her humidified trach collar because she hasn’t been using that in the past few weeks because she seems to wake up more with it on.  It is just easier to keep giving her the drops to keep her moist – it keeps her sleeping longer!

I also learned today that Disney World has a “Wish Lounge” off Main Street where we can bring Hannah to decompress and take a rest/nap without having to go back to GKTW.   I can see us using that at least a few times!   I know her experience will be better if she has time to come down from all the over-stimulation that she will be seeing.  Awesome!