December 25, 2018
Julia spent her Christmas sleeping the day away. All her vitals look great. Still no fever, and no vomiting since this morning. Her limbs are cold, and her face gets flush every now and then, but they believe that could be withdrawal. I consider her left arm worse than it has been, with no movement at all today. Her left eye is also pretty much stuck in a cross eyed position. She can move it slightly toward center if she really tries, but it seems to like to rest looking at her nose. When you're standing on her right side, it's clear she's looking kind of at you, but you can tell she's not really focused on you. We'll get a better idea on what's going on with her vision in the next few weeks... it's hard when she can't give any feedback. Her feet are in braces for 2 hours, and then out for 2 hours (you can see in pic). They're trying to prevent further floppy feet, just from so much lying around.
We got a few pieces of info pertaining to the next few days: PT got the OK from neurosurgeon to officially start physical therapy. They've been told it's OK to fully sit her up, if she's able, so I believe that starts tomorrow. FINALLY! I SO HOPE she can give her daddy another hug! They say they will "aggressively" be working on her left arm, and at this point, they have no reason to believe they will not be able to eventually regain some or all control. Eventually she will also work with an ophthalmologist to strengthen her left eye. There is a decent chance that with the cancer/stroke/sedation, the muscles are just too weak to move it. There is apparently therapy for that, and they will work with her to improve as much as possible. Her next MRI will be at the conclusion of her antibiotics, which should be the end of this week or Monday of next. They will confirm (hopefully) that the infection is cleared up and then will decide on next steps - whether pick up same chemo or go into the more aggressive stuff.
They're also so happy with her breathing progress, that they believe the plan is to attempt to cover the trach tomorrow for an hour and see how she does on her own. Right now she's still fully breathing (through the trach) with no issue, the machine is just doing a little bit to make sure her lungs don't fully deflate with each breath.
She continues to be very fussy when awake. Everyone believes she's just really frustrated as her heart rate doesn't suggest she's in pain. She can't communicate and is probably really tired of laying in that bed all day. I hope we start seeing improvement with the physical therapist... just sitting up is going to be huge. A daddy hug tomorrow might be optimistic, but let's hope for that anyway!
In non-medical news, she got a special delivery from one of her new friends who is also in the hospital. We met their family at the Red Corner Benefit recently. They colored some beautiful pictures that were delivered to our room =) And she continues to have a string of the most wonderful nurses in the world. Her 7:00 nurse came in with red ribbon to do her hair up for Christmas 💕