And so it begins

Normally I work steady midnights at our local university.  I work in the Residences, doing a combination of secretarial and hotel front desk type work.  But for three weeks before school starts and when it ends, I work days, assisting the other staff in getting the rooms inspected and our offices ready.

This year, my husband packed up the kids and took them to the cottage for three weeks.  All the kids that is except Leah.  Her doctors didn't feel that an 8+ hour hot car ride would be a good idea.  Add to it, that the cottage is only accessible by water - about 20 mins by boat.  Then to get to the nearest hospital it is almost an hour.  It just wasn't prudent to take her so far away from help.

My mom offered to have Leah stay with  her during the day while I was at work.  I reached out to Leah's step brothers, her friends and my sister and asked them to keep a day or two open to spend with her so Nana could get a break and Leah could have some fun.  As well, we did "fun stuff" on the weekends and ate take out whenever possible!

While at Nana's house, Leah spent most of her time laying in bed watching TV, eating and just chilling.  No excitement, no exertion and no episodes.

She had a couple small episodes while out with her brothers after some physical exertion but on the whole, the three weeks passed with out any major issues.

As I mentioned in the previous post, I have been keeping her school and teacher informed of what is going on with Leah and warned them it could happen at any time.....like today.

I got a call at about 11:30am from the school.  Leah had "wilted" - that is our way of describing how she curls into herself, drained of energy and lethargic.  She was responsive by head movements but not talking.  When I got to the school, she was curled up leaning against the teacher's reading chair, her best friend was sitting beside her, stroking her forehead and reading her a story.  Leah walked over to me - her gait wide and waddling, her eyes flat, cheeks flushed and raised her arms for me to pick her up, as if that small exertion was too much.  I carried her out and put her into the car where she was able to buckle herself up, got her home and cuddled up in bed with her.  She relaxed there, slept for a while and woke up hungry and back to herself.

While I was at the school I asked the teacher about the morning, had there been physical exertion, did they have gym class, had she gotten upset about anything, did she get in trouble for something and become emotional?  A whole lot of "No"s.  Other than the room being quite warm and stuffy, I can't ascertain any trigger for her episode.  So into the green book the info goes.

I can only hope this doesn't happen too frequently, it freaked her teacher and vice principal out!  But I guess I am glad that it happened sooner rather than later, now they know what to expect and the best way to deal with her.  Hopefully she doesn't progress to fainting like she did last year!