Friday, May 20, 2011

Off we go - update

Well, we aren't going in 2 weeks.  Turns out the researcher isn't available to we are hoping to do it the last week in August which would work better - it's between camp and school.  Less daycare to pay, yay!

In other news, yesterday they were doing roadwork in front of our house.  We decided to drive up the street to meet Dylan's bus.   For some strange reason, Marc was convinced the bus driver would somehow know that there was construction going on (there were no signs) and decided to go over to the next street to keep an eye out for him.  After he walked away, I called the bus company, asked them to radio the driver and let them know where we were.  A second later, the bus turned into the street.  I told Dylan to get his backpack only to find that Marc had it ~insert steam coming out of ears~.  I hear "I'm coming" and here comes Marc, running at full speed, on a wet pavement.  There goes Marc, twisting his ankle and falling into a patch of mud.  Needless to say, the fall triggered Dylan's memory of Marc's seizure and totally freaked him out.  Marc got up, limped over, we got Dylan on the bus and I took Marc home to change.  He got back into the car, put his foot up on the dash and I said, okay - we're going to the hospital. 

A few hours later, we left with an air cast and crutches and instructions to baby his sprained ankle for a few days.

Of course this means all the housework and yardwork we had planned to do this weekend will be done by yours truly - including mowing the lawn.  Let's hope I can do it early enough that I don't end up in hives from the 80+ degree heat we are going to have this weekend.

Wait, I was planning to do the lawn Sunday....  if I get lucky - the rapture will happen and I won't have to mow the lawn.  Oh wait, it's going to be hell on earth so I'm sure I will have to mow - it'll be my pentence for being the heathen that I am.  ~le sigh~

Wednesday, May 18, 2011

Off we go, into the wild blue yonder!

Dylan has been approved to be part of a study for children with the 16p11.2 genetic abnormality (they are studying both children with the deletion and the duplication.  When we received Dylan's diagnosis (he has the deletion) I, the queen of Google, found the wonderful folks at Simons VIP Connect.  There I found a great chat forum and the opportunity for Dylan to participate in this study.  It's, for the most part, completely non-invasive.  The most invasive part is a blood test and a possible MRI (if we can get him to sit for an hour - ~insert hysterical laughter~).  I'm hoping he does because I'd like them to get a full picture. 

I've found a great group of parents on Facebook and I've heard wonderful things about this study - especially their Boston location.  Plus, because we are going to their Boston location - that means some quality time with our friends Andy, Lori and their three girls (one of which we haven't met yet!).

Friday, May 13, 2011

Gazing into the crystal ball

When my dear, IRL friend Cecily asked on twitter if anyone would be interested in a free psychic reading I jumped at the chance.  Okay - stop rolling your eyes.  I knew it was for fun but hey, with all the shit going on around me I figured what could it hurt.   I called the 800 number at  It was a neat process and one I've never experienced (the few times I've seen psychics it's been in person).  They offer you a list of psychics to choose from.  I chose one who claimed to be empathic as well as a psychic.  I think her name was Allie but I was walking to work and the morning traffic did make it hard to hear at times.

She asked me why I was calling and I told her I had never done this before.  I just said I wanted a general reading as it pertains to my family.  It was VERY generic, nothing made me gasp and think OMG, how did she know that about me.  However, she just kept telling me that all my problems would be resolving soon.  I really hope she's right.

Friday, May 06, 2011

Great opportunity for parents of special needs kids

As many of you know, a weighted blanket is a great tool for children with sensory processing disorder.  For some, it can mean the difference between a child (and parents) waking every few hours vs. a full night of restful sleep. is having  a great giveaway on a weighted blanket.  If you need one - go register, tweet about it and blog about it and have a chance to win one!

Tuesday, May 03, 2011

WTF was that???

Last night, Dylan melted.  He melted hard!  Crying uncontrollably.  We haven't had a melt like that since before we pulled him off food dyes.  I even asked him (several times) if he had eaten something that may have had "ickies" in it (our word for food dye).  He insisted he hadn't.  He just cried and cried.  None of our bag of tricks were working.  Not the brushing, the back rubbing, the rocking.  Just made him cry harder.  Only when I began to whisper a new story in his ear did he begin to settle down.  I whispered of a wonderful, handsome prince who lived in a big, pink castle with horses and puppies and kitties and his Mommy and Daddy.  I told him about how the prince would ride his horses and pull the reigns to the left or to the right to turn or back when he wanted to stop (he just learned to manuver the horse this week). Gradually, my sweet boy calmed and finally fell asleep.  I laid there for a while, just listening to him breath, smelling his clear hair and wondering WTF just happened.  It started out as his crying over something really silly and just escalated from there.

I think he's still processing what happened to Marc.   Last week, we were running late due to a neuro appointment and my best friend picked him up at day care.  OMG did he flip out.  He screamed at her "I don't want Mommy and Daddy to go the doctor.  I want them to pick me up".  I think he thought Marc was back in the hospital.  Marc told him that nothing would happen to him and he was okay.  I told him after that he can't say that - he's still having seizures (smells and tastes - not full body) and that until it was completely controlled, he was at risk.  Dylan needs to be prepared so we've shifted gears and are trying to let him know that while it's a possibility, if it does happen, it will be okay. 

At around midnight, Marc brought him into our room.  He climbed in next to me, pushed my one arm under his head and pulled the other over his body.  Any time I moved, he'd pull my hand back over him so not a great night's sleep but I do love it when he's a snuggle monkey. 

I'm just worried about him.  He's seemed, well, off lately.