Post BMT +143
+143
Last night was long. Sleeping next to Tate, I’m much more aware of just how restless and uncomfortable her nights are. The tremors, myoclonic jerks and involuntary noises that accompany it make any rest at all difficult.
Neurology came in to see Tate today. There is speculation that we are looking at a movement disorder, potentially progressive. That’s a pretty big umbrella with lots of subsets underneath not worth the stress of going into until we have more information. We will hopefully learn more after another lumbar puncture. Due to the delicate nature of some of the labs(have to be hand delivered to lab and run immediately,) this won’t happen until Monday or Tuesday.
Tatum’s body seems a little calmer tonight. I’m hoping that is God answering our prayers even without a diagnosis. Wouldn’t that be an amazing turn of events!
Keira came down today and after a few tries got a couple smiles out of Tate when she told her she’d share her hair for a little bit. Tate is a pretty cute brunette!
Thank you for the ongoing support and encouraging words. I’m frequently amazed that you all aren’t tired of this journey yet. We our tribe!