Monday, July 30, 2012

 

 

 

I wish I could say now that he’s older it’s easier.

 

 

But then I’d be lying.

 

 

Oh sure, he was all smiles when he got his “power ranger” wristband.  He was even smiley while we waited almost four hours for a room to open.  He smiled when he saw the nifty, new, touch interface tv in our EEG room too.

 

 

But when the EEG girls arrived to get him wired up…everything went to pot.  By the way, these girls have been EEG-ing him since he was an itty bitty baby.  Miss. L was with us for that very first EEG.  When I fell to pieces after the neuro came and told us we needed to meet with him immediately.  I may not have known everything…being yet a special needs novice…but I knew enough to know that the chief of anything doesn’t make time for you unless it’s serious.  Miss. L tried to comfort me while my heart shattered in a millions little pieces around me.  I bet some fragments are still there.  Hiding in a corner, in that hole in the wall room. 

 

 

So anyway, I found myself wondering if he remembered.  Ya know.  The way he became frantic and panic-y.  Maybe he remembers his last EEG after all?

 

 

We were able to settle him and get him wired up.

 

 

By the time they were done, he was smiling again.  Especially, since he also happened to find the bed control buttons.  The nurse finally turned off his call light.  All the up and downing lift and lowering was keeping him entertained.

 

 

But not for long.  Pretty soon he was asking if we were “all done today?”  His infamous line when he’s ready for a home based ABA shift to end.  And he was less than thrilled when I kept reminding him…No, buddy, we’re not all done today.

 

 

We set it up so that Miss. ABA could come to the hospital and work with him.  Break up the day, I thought.  Turned out to be less ABA and more behavior management.  At one point, he started to freak out quite a bit and ripped his whole turban off.  Half the electrodes too.  We had to physically hold him down.  I was so thankful she was there because I’m really not sure I could have managed him on my own.  He’s little.  But not that little anymore.

 

 

So back come the techs to re-wire and wrap him.  Tighter this time.  With a chin strap.  I told her, the more barriers the better.  Since it was clear he wasn’t going to be tolerating it all very well.  She told me I should try to invent a better head wrap. 

 

 

That whole sha-bang was a night mare. 

 

 

But…

 

 

here’s a crazy miracle moment for ya.  After the techs left I took him potty and guess what he did…

 

 

He POOPED on the pot!

 

 

That’s right!  Not only did he poo…he told me he was going to!  And giggled hysterically when he heard the plop! 

 

 

Nightmares and miracles.  So goes our Life…

 

 

Also, he does rock the gear, if I do say so myself.

 

 

 

 

Here’s hoping he sleeps through the night and the doctors have compassion and release us early!

 

 

…danielle

6 comments:

GB's Mom said...

PRAYING FOR YOU BOTH!

happy's mommy said...

I'm "liking" your comment...just so you know. ;)

...d

Neurotic Iraqi Mom said...

That is absolutely amazing!!!He pooped! Can you believe that a poop can actually make us delirious with happiness???Looool. Sorry though about him getting antsy. I mean even us adults hate to be pinned down and connected to those darn things so imagine how our kids feel! Hugs to you both! One more day and its all over!

Mrs. M said...

Oh.....I feel your stress. It's a full work out holding Rhett down while he screams bloody murder...,and yes tips it off later.
I hope you both get some sleep! And that the night nurses are sympathetic.
Do they cease his meds during this?
I wish you could have a holiday day/night tomorrow and stay at a hotel overnight....alone....so that you could catch up on sleep. Doesn't that little dream sound wonderful?! :)
Course he rocks the EEG gear ....look at those eyes!!!

teamaidan said...

Yeah, invent a better head strap, will ya? Just in your spare time, you know.

Anonymous said...

This is totally out there but I will take any advice. I have two daughters one almost three one 17 months. Both have epilepsy. Our 17 month, on Keppra has been experiencing these strange shoulder shrugs , chest dropping forward, arms coming out an up with tight extended fingers. Back to back absence seizures lately. Unbalanced I call it her drunk walk, occasional random falling, a weird movement with shoulders and neck. She started seizing at 5 months her older sister 14. I have an email address, I'd love any advice and would love to send them to you for an opinion. Her respite worker did a good job getting them on tape, and there are still more. Can anyone help? We are going back to Seattle children's at the end of August. I live in a community in alaska. Please help nicole_2676@hotmail.com