Friday, 27 September 2013

Gearing Up...

Do you remember that obsessive, unprepared feeling you had the first time you were taking a trip with your baby as a new parent?  Now, multiply that feeling x10.  That’s where I am right now, and that’s saying something because I was one of the most prepared moms out there the first time we took Jack out of town.  Zip lock bags of all favorite snacks, every baby product known to mankind, multiple strollers, pack and play, well you all know. 

But what do you take for a 3 day stay in the hospital in which your autistic toddler is going to be absolutely miserable, likely sleep-deprived, and continuously wanting to pull approximately 30 electrodes off of his body?  Not to mention the fact that since he’s not sick (thank God) he is not likely to want to sit still- at all.  Seriously.  What? 

I got an “itinerary” from the study coordinator today and discovered that we will be transferred to another room at night time for the sleep study and will have a technician hanging out with us all night.  This further complicates my packing list, as I will have to choose a small number of things to carry with us each night when we trek over to the lab.  They have put in for a gluten/casein free diet for Nate, but I very seriously doubt he will eat much of what they give him.  The boy has a crazy picky palate, which means that I really need to pack enough food for three days. 

And I need to keep his hands and mind busy.  A ream of paper would likely accomplish this since he loves to shred paper and dangle it in front of his face right now.  And I will be bringing paper with us.  The boy can stim away as much as he needs to this weekend, I have no plans to redirect that behavior.  It gives him comfort.

I found several new “fidgets” on amazon which came today.  One is a “glitter wand” (clear plastic wand with glitter in water that moves back and forth), one is a “water wigglie” which you can squeeze- I think he will like that.  And then there are the old standbys, barrel of monkeys (this boy can make a chain longer than him!), and some favorite movies, especially “Happy Feet”, a laptop and the IPAD. 

I am bringing a book- hahahahahahahahaha
Not likely mommy.

Say some prayers for both of us, but especially Nathan.  Pray for no seizure activity, decreased REM cycle length (I think), and a smooth process for both of us.  God I love this little boy, and I just hope that all of this will lead to something positive for him. 


  1. twitter: LisasLeben27 September 2013 at 19:59

    When we did a 48hr EEG with our 2yr old the worst part was having the electrodes attached. I will spare you describing that nightmare. But once they were attached the hard part was keeping her occupied. Luckily she wasn't walking yet, so I didn't have to worry about her trying to run away. We brought a few toys from home and books, but she wasn't really playing with toys, so what really occupied her time was the tv. Thank goodness on a pediatric wing they had plenty of children's channels. I brought very little for myself, but if I had a kindle then I def. would've brought that. I wish you luck. I'm sure you'll let us know how it goes. Thanks for sharing.

  2. Sophie only had a 13-hour EEG and that was during her sit-and-stare phase as opposed to her running-laps phase which she is in now. We brought all our Thomas videos and snacks. It was good, she slept all night, none of the waking at night and laughing thing we were hoping to capture (it was a video EEG) honestly I think it went better than it would now. I hope it provides some answers for you. We learned that Sophie's brain waves "not normal" but no seizures either (whatever that means) of course she does have the PMG (curious-has Nate ever had MRI? You know ours rocked our world)
    Good luck anyway! I hope it goes ok