Not too much progress to report from 6 Long these past couple of days. He appears to have adopted the tortoise as his spirit animal, taking a "slow and steady wins the race" approach to his recovery (our patience be damned).  But as has been said in this blog before, Steffan has always operated on his own schedule.  Or perhaps it's that the helmet he will need to wear while he's missing his right bone flap is now within eyesight, and he'd rather feign sleep than be seen in something pulled straight from a Playmobil set. 

Speaking of the most awesomest pillow ever (courtesy of Chris T. and Ross), Huckleberry was finally able to pay Steffan a visit yesterday!  He got in some really sweet ear and head rubs, and will be visiting more frequently now that he has the all-clear from the hospital staff. 

Steffan also got a much needed manicure (thank you Hannah!) after five weeks of letting his nails grow out.  He better start speaking up more, otherwise she's threatened nail art next. We had a little dance party last night before bedtime. He gave us his loudest finger snapping yet, and his right arm and leg were really moving to the music. He was lifting his right leg up off the bed more than we’ve seen previously. Almost looked like he wanted to walk on up outta there. Can’t say we blame him. We’re hoping he gets more comfortable with the speaking valve, and says his 3rd word soon. The suspense is killing us. We’ve offered suggestions like, “I hate hospitals”, “I miss the 11th floor”, and “If you all would stop talking I could maybe get a word in”.  

In terms of the medical stuff, the cultures of his CSF continue to come back negative for bacteria, so we are hoping that trend continues and this round of antibiotics will be the last and his meningitis will soon be a thing of the past.  On Thursday, they experimented with clamping the EVD to see whether he could now absorb the CSF normally (and could then remove the EVD).  But a CT scan showed that wasn't happening.  They will probably try the same thing again in the next few days.  If it still looks like his body isn't reabsorbing the CSF, then they will probably replace the EVD with a permanent shunt.

The speech therapists have been working to reaccustom him to activities that we all take for granted, like swallowing.  He is showing positive signs in that regard, which is great because he detests the feeding tube running through his nose.  We are hopeful that continued work and progress over the next few days will get him to a point where he can start drinking liquids and eventually eat.

And while he hasn't been speaking, he is tolerating the Passy-Muir valve on his trach tube very well.  Right now he only wears it when supervised, but the hope is to keep increasing the time he has it on and work to recondition his lungs/diaphragm.  This is another step in the right direction, with the hope that the tracheostomy tube can be removed in the next few weeks.  This will not only be good in terms of him not having a tube sticking out of his neck, but also because it will expand his options in terms of rehab facilities.  Also, it kinda grosses Brandon out.

The collection of art and cards and photos on the wall in his room continues to grow.  Yesterday he seemed to be pointing at them, so Amy and Bek spent some time bringing things to him one by one to check out.  The support he continues to receive from all of you is amazing!  

Weeks ago, one of the neurologists told us, "this isn't a sprint; it's a marathon."  The great news is that Steffan is stable and moving in the right direction.  But the day-to-day steps are small right now.  Lately, posts here haven't been as frequent partly because there hasn't been much to report.  The other part is that all of us are learning how to incorporate our love and care for Steffan with the fact that our employers still think we should do work in order to get paid (how DARE they!!)  Rest assured, if things go north or south in any extreme fashion, we'll let you know.  But if it's been quiet for a few days, take that as a sign that Steffan is just loping along at his tortoise pace, making some slow but positive progress, and waiting for us to get that horridly ugly helmet out of sight.