Stones, popsickles and a million giggles

It is 1:16am and I am enjoying the dark, silent house in between feeds and meds for Aliyah (a nightly routine).  We just returned from our first camping trip with cystinosis this afternoon, and it was a soaring success!  I must admit, we were rather daunted Thursday night while we were packing and preparing.  First of all, Bob got called out to a site for work; secondly, it was med-prep night (so my wonderful mother-in-law came over to help “pull meds,” (a cherished few friends and family members have helped with that already), and thirdly, we were scrambling to get the trailer ready with everything we needed.  A lot of work with any small children around, to be sure, but with Aliyah’s extra needs it was quite the mental-list-making-journey to have everything ready to go!  I will confess, we stayed very local just in case, and camped in nearby Okotoks at Riverbend Campground.

En route to Okotoks - those clouds hung above our campsite, actually. Beautiful.

Our first night, a rainy downpour complete with thunder and lightening, didn’t seem too promising, but according to the Weatherman we were headed into some sun, so our spirits were high.  We met my cousin and his family in Okotoks for Sara’s first bowling experience – glow bowling (which we weren’t expecting and kind of freaked me out because I know those flashing lights can cause seizures – just another thing we didn’t need to worry about).  Sara loved it, and was adorable in her little bowling shoes carrying the little bowling ball around.  Even Aliyah got in on the action, sitting with legs apart at the bowling lane and pushing the ball across the line (slowest bowl EVER).  After dinner at Boston Pizza I got some much needed cuddles with Sara, who, it turns out, doesn’t ask for Mommy-cuddles a whole lot (she’s a serious daddy’s girl).  Fortunately, I get my share of Sara-touch with wrestling…

In the dark cold of the trailer that night, neither Bob nor I got much sleep: meds came far too soon and Sara wasn’t completely comfortable on the table-bed, especially as the rain tinkled on the glass and the lightening flashed.  I ended up sleeping with her at about 5am, too tired to bother returning to bed once she started snoring again.  And in the morning we had a soggy surprise: since I had forgotten to change Aliyah in the middle of the night, and Bob didn’t change her at the 6am feed, she was sleeping in a puddle of pee that reached all the way up the back of her neck to her hairline!  I guess that addressed the question of whether or not she actually needs to be changed in the middle of the night!  (FYI, to bed Aliyah wears diapers with ladies’ long overnight pads in them, which is pretty freakin’ hilarious).  Turns out that even with a mid-night change, Aliyah swam in her sleep again Saturday night.  I guess sleeping in one kind of squishy position without room to move leaves her vulnerable to soaking…

To make a long weekend story short, the sunshine showed up on Saturday and we spent the day throwing stones in the river (and there were plenty of them at our campground), strolling along the muddy, tree-lined paths, and enjoying Sara’s first orange creamsickle.

Sharing is lovely with a baby - it doesn't have to be exactly equal! But just you wait, "Yaya," until she's counting bites...

Some truly delightful moments:

  • Aliyah demanding to walk (constantly!) but this time, not satisfied with being in my arms, she wanted to use her chunky little goose-stepping legs herself
  • Sara learning to ride her pedal-less bicycle, and her endless giggles as she tried to run over Mommy’s toes
  • Aliyah desperately pointing at Sara’s bike and wanting a turn to ride it (she even says “bike!”  What the heck?!?!).
  • Sara, terrified of riding on the wooden swing or the unusually wide-bottomed cloth swing, giving the empty swing underducks
  • Sara’s first wiener and marshmallow roast (I was far more enthused about this than she).
  • Holding Sara under her armpits in the river while she splashed and shrieked with laughter
  • Quiet hours with Bob around the fire while our little cherubs slept away in the trailer

Happy cycling!

Oops - a little burnt!

All in all, Aliyah’s meds only slightly disturbed our freedom.  We had to make sure we had her med bag every time we left the site, and we’d forgotten the ice-pack for the cysteamine; we had soaked diapers and baby clothes to contend with and meds in the middle of the night and the wee smas.  Other than that, our spirits have been boosted: this thing will not beat our ability to enjoy the outdoors, and does not have to prevent Aliyah from being spontaneous!  Spontaneity will simply require a little bit of foresight…

And this last photo sums up the entirety of the weekend, and how we are recuperating…



2 Comments (+add yours?)

  1. beth@redandhoney
    Jul 25, 2011 @ 16:05:09

    Hurray! I love it! I’m so glad you guys had a good time, and now I’m even MORE excited about our upcoming camping trip together! It’s going to be so much fun 🙂


  2. shadesandshinings
    Jul 26, 2011 @ 02:21:05

    Us too, Beth! We shall see how tent camping suits us in two weeks…


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