I’ve become a stay at home mom to better accommodate Jack’s needs and spend more time with the boys while they are little. I get to enjoy being with them and it makes the logistics a lot easier. I’m so grateful to everyone who has made this possible. I absolutely loved my work team and was there for nearly 10 years. They have been so supportive all along and I will miss them greatly. They have always been such amazing friends and a second family for us. 

Today we had a follow up with Neurology. We were running late and as we rushed into his office I had completely forgotten that we were due to discuss the results from the mitochondrial testing they collected samples from us for way back in October (apparently it takes a really long time to run tests on your DNA). So when he pointed to papers on his desk and said we needed to discuss them,  my heart sank. They would have called if it was all clear. Back in October as we were leaving the office after collecting the cheek swabs the doctor said to us: “Pray that it’s just migraines. You don’t want it to be a mitochondrial mutation.” Super. I managed to stay away from google for about a month after that until curiosity got the best of me. What I found was really scary but by then Jack was starting to turn the corner. Then come December when the cortisol started kicking in and he was really improving we pretty much just assumed we had found all the root causes and I wrote off the mitochondrial stuff...until today. I will try to convey what I understand of the results but please forgive my limited knowledge. He does indeed have a mutation in the gene the neurologist was concerned about (the MT-ATP6 gene). However, it doesn’t seem to be severe based on how he is functioning (and maybe the level of variation? I’m a little fuzzy there since my adrenaline was so high when trying to have this conversation while also trying to keep two toddlers happy). The testing revealed I too have this mutation but I have been asymptomatic. Good news!  From here, it gets really “grey”...what does this mean for the future? We don’t know. Could this be the root cause of his episodes? Maybe. Or could be the migrane + adrenal deficiency. Or a combo. No concrete way to know. Could he get worse down the road or could I develop symptoms at some point? Maybe... maybe not. What do we do about this? There’s nothing they can do. Apparently very little is know about this. The doctor said based on my lack of symptoms and how well Jack is functioning for someone with this, the long term outlook is “probably fine”. That’s good news, but my pessimistic side goes to our history of hearing “it will be fine”, and then it not being so fine. So, I’ve called his geneticist at Emory to try to get an appointment to discuss further in depth but was told the earliest appointment was in September (I had to ask twice to be sure I heard that right); I put his name on a wait list in case of cancellations and am going to keep trying to get in sooner. For now, we just try to stay positive and focus on Jack greatly improving. Maybe for he and I this will be no big deal. I’m a big worry wort by nature though so I'm not the best at not stressing. And in my experince, when the doctor asks you multiple times if you are okay and then hugs you before you leave the office, things aren’t that great. I’m going to have a big margarita and what my work buddies call “shitty day queso” tonight, and then try to refocus tomorrow, keep looking forward and stay grateful for the good days we are having. I know all things are in His time and His plan so I will try to get better at resting in that.