Tuesday, July 28, 2009

We're Back...I Think

I am just plain tired.

It's been a long, long time since I felt this way. Maybe after a trip to Asia. But Asia never had me emotionally wiped like this, this is a double whammy of physical fatigue and mental exhaustion. Why is it that a Thu-Tue trip to anywhere BUT a hospital for one of my kids would not leave me this wiped out?

Anyway, just a quick note, we had the 3.5 hour Neuro-Psych eval today, then high-tailed it outta there. I hated it. It just showed me how seriously delayed Bennett is in a lot of cognitive areas. But waddya gonna do? We gotta know where we are before we can know where we're going and look back at where we've been.

Now it's just waiting until the case review on the 25th. Joy.

More later...gotta pick up the pieces, try to get re-situated to life, you know how that goes. Laundry, cleaning, prescriptions, work, etc.

I'll leave you with a very odd photo I snapped after Bennett got his leads off and was jumping around the hospital crib like a banshee just waiting for the discharge to go through.



  1. That must have been hard, seeing his delay in objective terms. I know it was for me during Ella's PT eval, and then hearing the percentiles and standard deviations to back up their findings (she's still on the low end of normal right now).

    Glad you're home. Hope you all get some rest and that the 25th comes quickly for you.

  2. As an ametuer photographer...loved the angles! And the subject of course!

    The boot-kicking is one of the things I am NOT looking forward to next week.

    Wishing you all a quick recovery!


  3. Can I say that the part I loved most about this post was:"But waddya gonna do? We gotta know where we are before we can know where we're going and look back at where we've been."... optimism if I ever heard it!Hospital time is what I call crazy time.Feels like it drags.Other ways it flies,but either way leaves you completely spent.Hope you guys can catch some sleep.

  4. "Laundry, cleaning, prescriptions, work, etc." - Are all necessary, and real, but you also need a very good night sleep, and a day of rest.

    "Normal" is overrated, and you knew Bennett was a slow in some things, and he even went backwards in others, it just hurts seeing it in black and white. But he's young, and if all goes well, he'll begin developing better and quicker after surgery.

    It really was necessary to make the evaluation, or else it wouldn't have been done. But imagine how happy you'll be when that same evaluation is made after surgery, and he's, not only, all there, but learning better, and developing faster.

    This is no "What Dreams May Come", this is "What Dreams WILL Come", and they'll come soon. Sure waiting until the 25th is going to be hell. No use pretending.

    Weird, Crazy and Sick Portuguese Guy.

  5. I, as well, know ALL too well how those evals can get you in the gut...(One in particular that I plan to blog about at some point)...It is SUCH a kick in the stomach....Even though you KNOW already....I think we are always in our own little world until we are forced to see it through the PROFESSIONAL'S world....On paper...

    Get lots of rest and do some of those ordinary things you mentioned...Get back to YOUR normal...For now....Because you may just not have that particular NORMAL for long, ya know? Wouldn't that be someting?


  6. Okay, one 24hr EEG was enough to make me see double. I can't imagine going through this more extended one...plus, the one before. And the one before that in Detroit! I know you guys are probably staggering right about now from lack of sleep and rest...but you're much stronger than you give yourself credit for. Going through so many tests and hospital stays is no easy task. On the body or the mind.

    Hoping you all get settled back in catch up on some rest soon!

  7. When the surgery is over and you do the same eval even if you answer the questions in the same words you will answer in a new voice. Cause now the answer is no and it's hard to see how to get to yes but then his future will be a blank canvas and you will see the potential in a whole new light.

    I have high hopes for Bennett. I know you do too. Hoping the team makes the right choice for Bennett.

    Funny story for you. Emma has been a bit off for the last two days. Focus and behavior all over the place. I could just feel the seizures coming back. Tonight on the way to the park she got all agitated and then all serious. She just stood there and started to shake all over. I'm absolutely freaking out cause the diastat is at home when all of a sudden she bears down and pushes out the hardest crap of her life. She's totally unimpressed with my sudden joy at her painful production. I'm laughing and jumping for joy cause no way do I want to go through more seizures.

    Hope to add some joy to your night with my overshare. Hope you feel a bit better. It's another month of waiting but at least you are adapting to new drugs. You are working with a team that cares and will adapt as necessary not like before.

  8. You know, when they're in the throw of IS, it's like everything is on hold while they deal with that. IF you can get these things even halfway under control, you will be amazed at the progress he makes.


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