Somewhat organized chaos

Seems like each week brings on a higher intensity level of emotion, stress, insanity, and blessings.

(I swear I said before that I'd love some boring, maybe it's better I don't remember what it feels like.)

We had 3 days of major stress trying to figure out where and how we would get moved again... the owners of the house want to sell.  I was very grateful when they came back over to say it's not happening as fast as they originally said, so we have some time to get things figured out.  Those sentences seriously don't do the whole ordeal justice, it was even more overwhelming than when we had to move right before Damon was born in less than 30 days.

Damon's Keppra has made a gigantic difference in his seizures, focus, thought organization... but WOW he's one grumpy baby!  I'm not sure how much more of the 'tude I can take. :)

Aidan's neurologist finally called back but we still have no help.  They want to try to move up the eeg, but I haven't heard anything again.  His metabolic bloodwork came back off again, so they need to retest but want to have it done there not here... so it's waiting.  Supposed to call back about the meds but I'm not holding my breath.  It's obvious he's not taking what Aidan is experiencing seriously.  Whether or not it's because he's overwhelmed or annoyed doesn't matter, the fact still remains, Aidan is not being properly cared for.

Things are spiraling out of control for him again and of course, each time is worse than the last, so it's pretty bad.  He's been going into heatstroke no matter what extreme measures we take, his seizures are so out of control we can't get any school done again, and his behavior and hyperness are at an all time extreme.  His PT is ready to cut all therapy, it's so bad they are getting zero done in their sessions.  It's not Aidan.

We had to do another clean out last week because Aidan was showing signs of a blockage.  He's been having them a lot lately.  He made it to the bathroom in time, but got some on his pants when he stood up for help wiping.  He kept apologizing, and had been all day.  I calmly said it was no big deal that I'd just clean it up.  I took his soiled pants off and said I was going to get his pjs and he asked if he could follow... I thought that was odd and said, of course.  I helped him put his pjs on.  Then he got all serious and said, "I know it's getting worse."  I asked what is getting worse?  He said, "the seizures."  Then he said, "my stomach hurts a lot."  So I asked if he meant hurts really bad or often.  He said both.  So then I said, I'm sorry.  I wonder what is making it hurt. (I knew the answers to my questions, I just do this to clarify.) He matter of factly said, "it's the seizures."  So I asked, does it hurt when you're eyes dilate or is it different?  He said, "when my eyes dilate."  Which would explain why I'm having to give him a clean out so often... 


Then Friday the dda worker that has been with him for about a month had to leave for a trip and his old worker came in her place.  Aidan still had a ton of seizures, but his behavior turned from acting out to super hyper with each seizure.  That made what was going on clearer.  So we have him with his old worker still this week.  So far, it hasn't changed since she came Friday.  Hyper, but not the violent acting out.


Then this morning, even though we all tried so hard to help him with the transition and to cope, he was still super hyper with the seizures.  We've been trying to get him to take "breaks" to self calm.  Of course it's not helping... because the cause of the hyperness hasn't gone away, and it's not something he can control even though in our minds that's not possible.  Frustrating!  Anyway, while in one of his breaks this morning, he suddenly started sobbing.  I was stunned, because he has maybe done that one other time.  For a split second I wondered if it was a seizure.  But then he answered my question of what's wrong?  In between sobs he said, "I'm so tired of the meltdowns!" Because of Aidan's difficulty with expressive language, I often have to give him choices of answers and he picks one.  I always offer, "something else."  As we did this typical exchange his answer was clear. He's frustrated that he can't do things now that he used to do easily and that he can do things sometimes and but other times he can't.  In between gigantic sobs he said, "yes!"


I explained that I too, am going through similar things.  I can't do things I used to easily.  I'm clumsy and have pain and numbness that causes all sorts of problems with daily tasks.  That sometimes I can do things like open water bottles, other times I can't.  One of the biggest things I hope he remembers is that all that matters is that he does the best with what he can do, and then let go... we will help with the rest.
Then I told him that the biggest thing I hope he remembers is that Heavenly Father LOVES him, and that he is so very important and valuable.

In so many ways, I look up to Aidan.  He's much more patient than I am.  He's got such a big loving, forgiving heart while I feel like mine is a tiny little shriveled up thing in comparison.  He's way smarter than I ever was.  He's taught me far more than I've taught him.

I asked him if he understood what I was trying to tell him.  Again, in between big sobs he said, "yes!"
I sure do hope so.