Thursday, December 14, 2017


On Wednesday I took little man to his 2 week checkup.  As we walked into the room the nurse asked me if I had any concerns.  I paused for a moment as I formed the thoughts in my mind to attempt a coherent sentence aloud, and then muttered the words, "Concerns?  umm...I don't know if I would classify anything as a concern...nope".  We did the typical weigh in, head circumference, and height check, and then she said that our pediatrician would be in shortly. 

When our doctor walked in we engaged in our typical small talk and she looked over little man.  I don't know why, but every second felt like an eternity, as if her thoroughness meant she was going to tell me something was "off".  Besides commenting on his clogged tear duct and writing a script for some eye ointment, she never mentioned a concern.  Near the end of our visit I mustered the courage to bring up my "not really concerns, concerns"...

Me: "Ok, the "typical baby shakes" when do they end?" (I was relieved when her face said "you aren't crazy")
Dr. K: "Oh, those can be a couple of months",
Me: "Ok, because they are honestly making me crazy, even though they are completely different than Sonzee's 'shakes'".
Dr. K: "Well you can always send me a video"
Me: "You'll just tell me it's normal
Dr. K: "But if it makes you feel better..."
Will anything short of a PEMU stay, genetic testing, and time actually make me feel better?  Despite trusting ALL of Sonzee's doctors as much as I am capable of trusting a medical professional, words without anything tangible to back up claims will not calm my mind or fears.  Almost 3 years ago I told multiple doctors and nurses my concerns over my 20 minute old daughter and none of them listened.  The NICU nurses and doctors while amazing, never entertained seizures and Sonzee's original pediatrician also told me "you have a healthy baby" and "babies do weird things".  I don't fault any of these professionals, Sonzee is rare, early onset seizures are NOT typical, CDKL5 is NOT common; but besides having to rely on my (conflicted) gut, time, faith, and hope, I am not sure there is anything that will give me actual comfort.

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