Archive for June, 2011

Quick Update-Nutritionist Appointment

No weight gain…but no loss, so that’s good.

There is a possible .25 in growth in height.  That being said, when the nutritionist measured her (it’s a pull down ruler) she pulled it down to her head, then let it go up and said “let’s see if we can get another part of an inch”  So, I’ll reserve my jumping up and down for a second measurement…but if it’s a true growth…the first we’ve seen in 3 years…you’ll be able to hear me cheering all over the place.


Still preparing for next week…I’ve got snacks and entertainment…I think we’re physically ready…mentally…that’s another story entirely.


We’re coming down to the wire….


Mariella started her inhaled steroid taper yesterday.  We’re getting her off QVAR first, then off the Symbicort.   It will take about 2 week.  By the day she’s admitted (July 5) she will be steroid free.

I need to start thinking about packing.  Her other stays have only been overnight, one or 2 nights…and she was happy to stay in a johnny.  I’m pretty sure she isn’t going to want to stay in a johnny for a week.  I did pick up some nice short and tank sets that can double as jammies…so maybe I’ll just pack those.  She can sleep and play in them.

Entertainmentwise, I think we’re covered.  I got her a new game for her DS (plus all the other ones she likes) and I’ll get her a new movie.  I’ll pack both laptops so that she can have one too.  I still have to get a few craft kits to bring.  I also know they have a great playroom for the kids…and I’m sure there will be a Child Life department as well.  We’ll go to the library next week, and she can get a few books to bring too.


As for me, I don’t want to pack to heavily, but I don’t want to NOT have what I need.  Mariella and I can share shampoo/conditioner and soap.  Neither one of us NEEDS a hair dryer…though I DO think I’ll pack my straightener.  I’ll load up my kindle and hopefully, the hospital doesn’t block social media sites. (I don’t know what I’ll do without Facebook and Twitter to keep people up to date on what’s going on.


Right now, I’m most nervous about the taper.  I know it’s safer than just cutting her meds cold turkey in 2 weeks, but I’m just very nervous about being home as we decrease her dosage.  I KNOW that the risk of anything happening is SO slight that it’s nearly non-existent, but I’m still nervous.  I often feel like “other people”…you know…when people say, “oh, that can’t happen to me…THAT happens to ‘other people'”  Yeah…’other people’…that’s me.

So, my list for Mariella is

  • pajama/clothes
  • robe (she loves her robe)
  • slippers
  • flip flops or sandals
  • lap top/charger
  • DS and games/charger
  • ipod/charger
  • books
  • craft activities
  • easily packed games
  • toothbrush and toothpaste
  • comb and detangler (darn curls) and hair ties

For Me

  • clothes for a week (my clothes are SO much bigger than hers, they are going to take so much room)
  • laptop/charger
  • ipod/charger
  • kindle/charger
  • other personal care stuff

For both of us

  • shower stuff

Does that look like a good list?  Is there anything that I’ve forgotten?  For those of you that travel, any tips on how I can keep my stuff light…I’m not used to traveling to a place where I don’t have access to a washer and dryer…and a weeks worth of clothes just seems like a whole lot of stuff.