I sit, I wait. And wait and wait. You’d think I’d be expert at waiting by now, and I may be, but I’m immensely unhappy about it. Tick tock. We went to the metabolic specialist as scheduled two weeks ago. Still waiting for the results! It’s been hard for me to blog lately, I am just so preoccupied … with this, with our schedule, with our upcoming IEP meeting.

I wish I had posted right after our doctor’s visit, because John was amazingly good for the pricks and prodding. He had to fast overnight before the first round of tests which turned in to 15 hours by the time it was all said and done. Happy boy. No, really! He even sat a very bustling restaurant amid the din of humanity — no tantrumming! — for his prescribed high-protein lunch (two scrambled eggs and a yogurt smoothie) before returning to The Lab of White Coats for more pricks.

On any other day, any one of the many stressful events of that morning (which began at 6 a.m. when I whisked him out of bed for our trip) would have created a torrent of dysregulation, but he took it all in stride. Which is why we only took John. His brother would have not handled it all this well. It’s fascinating that because they are identical, the doctors only needed to test one of them. I think, though, that if these tests keep pointing us in this mito direction, that they will also need to put Sam through it as well.

You might say, I’m a bit dysregulated with all this waiting. Hoping it ends soon.


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