What exactly does this really mean?

 I had awesome plans this year, for Halloween and kicking off Epilepsy Awareness.
But then it all took a back seat to what was happening with the boys.  I did get the pumpkins up though.  Their mouths, eyes, and noses are purple- not black.  Some of the bats are purple too.

 Someday, when all this has calmed, I will have my not for profit and do what I dream of doing. :)

My mom made bats similar to these (I'm pretty sure hers had the wings facing out as if flying, not hanging like mine.) every year with her school kids.  They are made out of dried milkweed pods and cattails, spray painted.

Random pic of Jace with some of his art. In a good moment.

 So Aidan's strength reduced even more, and what seemed a quite rapid rate.  Just in a month, he went from wanting to play trains several times a day to complete exhaustion, needing to be carried or wheelchaired much of the time.
So I took him to the Ped, who did some blood work which turned out included a high blood sugar.  Retest showed improvement so Ped relaxed but said to keep a close eye on him.
I have several family members with both Type 1 and 2 diabetes, as well as having gestational diabetes myself.  So I knew that a sugar over 200 was not normal for a non diabetic person no matter their age.  I didn't know, however, if this truly meant diabetes.  So after realizing I must have given away my glucose monitors, I asked my friends if anyone had one I could barrow.  Talking with another mom in our ward about Type 1 diabetes, I knew I wasn't thinking wrong, and kept checking his sugars occasionally.

 After several spikes to just under 300, and many more out of the normal range for an 8 yr old, as well as a couple ER trips... we ended up at pcmc again.

Diagnosed with Type 1 Diabetes by his Endo, and on insulin.
The Ped confirmed, this points right back at metabolic genetic syndrome... again.  Like we needed more proof.  But apparently we do... because there's still no answers.  Just more symptoms stacking up.

 Not just for Aidan, but Jace too. Damon is still fairing okay... but so did Jace for a good length of time.

 Jace, cognitively and physically exhausted from the psych testing.  Something two years ago he breezed through.

Lots o anger and lashing out with the regression.  I remember this well.  Aidan would flow back and forth from bewilderment to anger.

Trust me, these pics don't at all do justice to what his real face looked like each time, and looks most of the time.  He has Uncle Fester eyes really bad, he can hardly keep his eyes open a good share of the day, his strength has reduced as well.  But most can't see past the behavior.  Really oppositional, disruptive behavior that can be jaw dropping at times.  It's not Jace.  Damon follows, even though his is just being tired from not enough decent sleep... he is not in as much pain as his brothers yet.
At one point it was suggested he could be bipolar. Bull, it doesn't fit the symptoms and is clearly associated with loss of skills and seizure activity.

What happened during OT today, put a thing... a big striped elephant that no one has really addressed, on center stage.

It's nothing new that the Dr appts are at a whole new level.  One might say, let's not be dramatic... 

 :) Then let me explain.

Ped appts whenever things worsen, on top of the routine. (Even just a basic cold can bring on trips to the Ped and the ER.)

Neuropsych appts for testing, first Damon, then Jace, now Aidan.  These appts require several to get through the testing. Then there's all the therapy recommended, that comes after.

(Our ID state government has chosen to make large cuts to this too, and contract third party private businesses who do an even worse job than they themselves did.)  As we see the continued loss of testing, this will naturally eventually lead to an end to the therapies as well.  This will induce suffering they and others truly cannot comprehend.)

Neurology (w/3 different sub-specialists,) Endocrinology, GI, Metabolic Genetics, ENT, all require startup/follow-up/testing.
Probably forgot something in there, who cares... I think I proved the point that with 3 boys and doing all this, my weeks are filled to the brim with appts.  It's part of why it's so easy to ignore my own health.  If you can call it ignore. lol  I think it's more- where do I fit it in?

I did manage to reduce it by one.  No more Behaviorist.  Honestly, he wasn't really doing anything anymore anyway. Which leads into what the elephant is.

We've seen a consistent, repeated, cycle of regression in behavior that isn't associated with actual changes in parenting methods.  We can make excuses like, not all the therapists are on the same page in how to deal with behaviors, changes in aides or therapists, major increases in appts and the stress added, etc etc.  But what it comes down to- we've experienced it before, again and again with none of those truly proven.  Aidan doesn't participate in it as much now, I'm assuming because he physically can't. I've noticed a calm resolution to him, change in his attitude toward what is happening to his body and mind.  Only once in a while now, does he lash out.  He has to be feeling really awful, and being expected to do something that his sensory issues can't handle.  But poor Jace is getting the problem child label big time.  And as a result, they are looking at what I'm doing, and missing what's really going on.  Everyone is so focused on the behavior itself, except the people who should be, (neuros- sadly, yes, I said that... not in the way the mean one did though) that no one is seeing a huge piece to the puzzle.  I've said before, the autism is getting worse over time, not better.  That's not a typical autism.  Getting control of the sensory issues typically helps reduce the autistic behavior.  But we can't get control of the sensory!!!
Which means therapies aren't working.  Is there something  we haven't done that might work?  If therapies just plain aren't going to work, what are we to do?  This uncharted territory that I've been placed in is starting to look pretty lonely.  I'm not trying to sound bleak or pity pot.  It's a reality.  That I'm trying to navigate through with the little info I have.  This is part of the, "it won't be pretty," and "it will get worse and worse," part, I suppose.

 Waiting for the latest neuro appt. at pcmc.

 Yet another EEG...

On the ride back, Sandy licked Aidan's hand until he fell asleep.

One more of Aidan's meds has been increased again, and in a couple days we will discuss the results of the EEG and look into having another MRI done.  Blood work is pending receipt of blood work already done.  With all of those bruises, the neuro doesn't want to double test and wants to be sure of what he's interested in testing for.  Endo in two weeks.  Then back to neuro and genetics.  Somewhere in there a sleep study on Damon is supposed to get done.