Yo-yo

Very rough day yesterday.  

All three boys were just... off.  But Aidan had a particularly hard day.  I was actually a bit frightened when we were in church and took them home right after sacrament mtg.  Aidan suddenly went ghostly pale and started jerking and it just went on and on.  Later at home, I tried helping him by making a lunch and dinner that were loaded with fats.   This was an experiment, that I based on info I've researched about the genetic disorder he's been tested for.  Each meal was such a fight to get him to just start, in spite of my effort.  Once he started it wasn't a problem, but good grief it was a bear to get there.  It's been like this forever and it's very wearing.  He'll have days that aren't as bad as this, but so many of them are like this.  So waiting for the results of the genetic testing, it's just... SO frustrating!

Don't get me wrong.

I'm grateful for so many things.

We've just been punching at air in the dark with all this though, having no idea what we really are fighting.

We need answers so we stand a chance with this.  It's been such an uphill battle.  And it's so hit and miss with decent drs.  For people with good health, that's not an issue.  

With our boys it's the difference between ER visits and hospital stays, and staying home.  And with it getting worse, the stakes are getting higher.
So back to my little experiment...
He had two meals loaded with fats from butter, bacon, sausage, and cheese.
First thing this morning he had OT.
After the session she came out and said, "I don't know what you've done with him, but he's had the best session in months!"  She gave me his work and wow, it was great for Aidan!
I haven't seen an improvement in behavior, but that is actually what the info I researched warned of.
I will say though- Today when I gave him a lunch of whole wheat crackers with bacon and cheese, he left the crackers and ate the rest.
I will be continuing my experiment and hoping it's really the fat helping. :)