Today was one of those days I anticipated to be emotionally draining right off the bat.
Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.
First up, an appointment with AJ's cochlear implant team. We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia. Amazingly, between five adults and AJ we managed to achieve the ESRT! A new program was created from the results. (I will do a separate post explaining more)
We figured out his processors have been switched. Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING. Cochlear implants now have this "safety/non-freak out" feature. The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing a completely different program on the wrong side? Ouch.
I have no idea how this happened, and it really doesn't matter. What matters is that we make sure the mistake is not made again. I'll be using the remote to test each morning to make sure we're copacetic.
My heart literally dropped the floor and I could not control my tears, not matter how hard tried. This was the last thing we needed. (How many times have I said that?) I started questioning things, so that's why he's not turning to his name, etc. All things you see in hindsight. It bothers me that I don't know how long he's been "off-line". When we put his implants on he freaked. He wore one home and when I tried two, he screamed and I got sick. Lovely. I felt so overwhelmed that we were in a broad sense, starting over. I can't stop his life to help him adjust-the world is a loud place!
After lunch, we went to downstairs to swing and he tolerated two just fine. The pattern I found today was that he was fine for a while and then just needed a break. He then tolerated them again...for a while. This is progress.
A few hours later, we ran over to the neurologist's for a quick, painless visit. We came home, ate dinner and listened to Pandora.
And he was happy. Gee whiz, kid. How do you do it? As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude. How.does.he.do.it. So resilient. He's always been that way. He has such an incredible aura about him. He inspires me to keep going. If his little body and mind can do it, than I can at least try, if not do it along with him. His smile is like an etch-a-sketch. Really.
During AJ's first appointment, my foot fell asleep. We were all sitting on the floor and I felt my foot fall. When I attempted to get up at the end of the testing my left lower extremity was completely asleep. In a very deep, odd way. It scared me. I tried to walk and it was this really weird feeling. Not that funny, ha-ha my foot fell asleep feeling.
And I thought, Oh My God. My sweet husband has this happen without notice. I was humbled. His MS has been playing games recently, which.... Has thrown us for a loop. We were blessed with a full year without symptoms. Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening. With no rhyme or reason. Which is incredibly frustrating. So, I took my tiny glimpse into his fight and tried to understand all that I could. So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given. Its just a fact.
My husband is resilient too, you see. And for that, I love him more than words can express. He knows. I know. And we move forward. I move forward with the strongest men I've known; the two resilient men in my life.