Hey everyone. I was going to try and make this update thing a weekly event, but I am just too excited and felt like today was a great day in terms of Tintin‘s progress. It’s been a few days since her Solumedrol steroid treatment completed, and today she started her plasmapheresis treatment, which they will run for 5 days and then depending on her progress, they may choose to do a few more days of it, but her doctors are liking what she’s already showing them. It seems like her motorskills and level of communication have increased 10-fold over night, and keep in mind that this is before today’s start on the plasma infusion. My Mom and Nini came to visit her this morning, to find her with her new neck catheter installed (for the plasmapheresis), which is of course kinda scary to see, but you understand why it’s there. After a little bit of command exercises to wake up her brain, her motor was up and running. She was eating for them, which she has been increasing her food intake each day, and has been able to chew and swallow much more deliberately as if it’s back to being a natural process. She’s not gonna starve, that’s for sure! For the past few days she’s been able to follow my simple commands of “smile” or “show me your teeth”, but she struggled with stuff like “grab my hand” or “close your eyes”. It goes to show you how intricate and delicate the brain really is. So get this. During this morning’s interactions, Tin sits up and points at Nini’s water flask like she wants it. My Mom slides the table over to her and asks if she wants it. Tin sort of points and nods and my Mom hands her, hers, and she proceeds to hold the 40 oz. flask up to her mouth and take a sip out of it, all by herself! Just 24 hrs. before, she could barely hold a sippy cup up to her mouth. Shocked would be an understatement! It gets better. Lunch time comes around and they hold up the room service menu for her, and she starts pointing out exactly what she wants. PB&J sandwich, a coke (which she actually said coke), and French fries. Wtf?! Who is this new person? Oh, it doesn’t stop there. So, the fries come, and what does she do? Starts picking up her fries, dips them in ketchup and feeds them to herself. She was eating soft mashed up food just a few days before. If this isn’t a sign of things moving in the right direction, then I don’t know what is. I can’t begin to tell you how proud I am of her progress, and this is all before this crazy bionic plasmapheresis stuff was even started.

Her administering of new plasma was a cool thing to see. It’s done similarly to dialysis, where they pump in new plasma and they take out some of hers. The new plasma will take the wheel of her plasma and teach her auto-immune system to get back to work, fighting off viruses and infections. Oh, and we finally got an official diagnosis based on her lumbar puncture lab results, and she tested positive for Anti-NMDA Receptor Encephalitis. That means that Neurologist Dr. Rosenberg from Magan and Inter-Community, who first suspected that and treated her, was right in that she did have it. That’s great, and means they can continue down this path more confidently. There is such a sigh of relief right now from me. She’s more healthier, responsive, alert, hungry, and still sweet as ever. I ask her for kisses and she puckers right up…Sometimes slipping some tongue in there 😑. Mmhmm. Blame it on the brain ticks, lol. Speaking of ticks, the only one left that I notice, is her chewing while asleep mostly. Sometimes while awake. Looks like a junky who needs a fix lol. It’s probably related to some of the meds. Not quite sure, but it’s minimal. Tonight, her nurse came in and asked her to perform tasks for her and she pretty much was capable of doing them all. Holding up hands, squeezing fingers, wiggling toes, nodding yes and no, and she was even able to answer “yep” to a question. All major improvements for her. She has started working with the physical and occupational therapists on getting these functions going, and we’re gonna continue to keep it up. They brought a recliner chair into her room, and she likes sitting in it when she can. I’m sure it’s a nice change from laying in the bed all day. She’s a trooper.

So yeah, this week was full of a bunch of small advances, until today when it seemed to just take 10 steps forward. So nice, and a long way from almost 3 weeks ago when we were taking 2 steps forward and 1 step back almost every day. I hope this keeps up, and she improves even more rapidly after this plasmapheresis phase. I’m crossing my fingers!

I want to thank everyone who has followed her on this crazy journey. Her eyes lit up when I told her that her story got over 700 views on my blog in 24 hrs. That’s all you guys checking in on her. Every like, comment, and share, will be there for her to see when she gets better, and you know this gentle sweet girl just wants to be liked, loved, and accepted by everyone. Why else do you think she puts herself out there unconditionally for so many of us? Because she wants…No…She needs to be loved. I don’t ask people for anything, but I would like to ask you all to show her some love! It’s her lifeblood. It’s her energy. It’s her soul. Thank you everyone for the love and support.