I know some people are probably sick of me blowing up their news feed with these updates, but I know there are others of you, Luke's Ride or Die clique who are like, "Oh my gosh... why hasn't she posted... what happened?!?!" Panic ensues. I got you. I'm here. We are all good.
So, let me say. Luke's bone marrow responded beautifully to the "white blood cell making" medicine, Neupogen, he took yesterday. He also never ran another fever the whole time in the hospital. His seizure count was T-9, W-7, R-3. We are all over the place with the amount and the intensity. These seem to be over and you can almost see a spark catch him. It will happen a few times at the end of the seizure and it really ticks him off. All to be expected with the amount his meds are changing right now, but not easier to watch. It makes things so much harder when you can't explain to him what is going on. When he cries after a seizure, is it because it hurts? Is he scared? Is he mad? Or is it a neurological response? He used to laugh before he had one and I'm pretty sure it wasn't because it tickled.
Luke actually started feeling so great last night that he only slept for about 3 hours. What did he do the other hundred hours you may ask... sing to the entire neurology floor. He had a party and demanded I come. He seems so much more vocal in the past few days. I am associating it with the reduction of Sabril, but we have so many moving parts right now it is hard to say. Needless to say, as soon as we got in the car he bailed on me. We are home and there is so much more to discuss. Preschool? Surgery? Medicaid? Blood? (nice word bank) But I am signing off tonight because the 3,000mg of caffeine that I have ingested in the past 72 hours did its job, but clocked out about 2 hours ago. It is done and so am I.
P. S. Thank you all so stinking much for the love, text, prayers, and support not only for Luke, but for the whole family. This was an unintended repercussion of this blog and it is really overwhelming.
Mother of two amazing little boys, one who just happens to be a TS warrior.