Thursday, April 15, 2010

Thoughts on planning.

I was just catching up on the disABILITIES forum and am glad I did, except for the part where I have to tough through the posts about the little girl, Mya, who is no more.  I shouldn't do this at work - I get funny looks when I cry.

I keep wondering about how best to get basic physical items down to Florida with us, but just as important is information.  Some other parents have been discussing hospital options during thier trips and that got me thinking that I'll need to consolidate the contacts, medical info, procedures, etc in one place so that should we need to visit the local hospital we can have this stuff handy.  We're accustomed to our home hospital and knowing that if we miss a bit of data it is quickly and easily checked in the computer system.  This won't be the case in Orlando/Kissimmee so I have to be sure that I have direct contacts for the most critical doctors and accurate drug data.  And wouldn't it really suck if we ended up spending the whole trip on an in-patient stay?

It looks like I'll be reverting to my "document everything" mode for a bit!  Of course, I'll need to have it all handy, and what better way than on your smart phone?  Could I use this to justify a release-day purchase of the new HTC Evo?  Probably not.....  Guess I'll have to consider Gmail and Google Docs.

We've taken the unusual step of banning interaction with one of the neighborhood kids. He has strep and we just can't take the risk that she'll get it so we've had to keep Jason away from his friend until he's finished his course of antibiotics. I feel bad for both Jason and Blake, but we just can't risk it.  She is going in for surgery on 29 April to get those pesky saliva glands sealed up before they kill her.  We expect a 4-6 day recovery with a lot of it in ICU.  I hate ICU.  Once the surgery is done we'll go with a CPAP/BPAP and see if we can reduce the frequency of aspiration pneumonia and sleep apnea.  Some nights you put her to bed wondering if she'll wake up dead.  Makes for a long night and a worrysome morning.

Nothing new from the MAW folks, but we're so far out from the trip I don't really expect anything.  Right now it's just a matter of managing my vacation time so that I can go without losing pay.  And saving some cash for extras.  And buying some clothes.  And worrying, planning, hoping, wondering, researching.......

In the mean time we have two very busy weeks ahead - dentist, birthday party, prep for camping, cub scouts, circus school, camping trip, veggie garden startup, yard cleanup, finish the clubhouse, more planting.  I'm pooped.

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