My Food Is Problematic

Last night was a cacophony of cries, beeps, sweeps, and creeps.  We weren't stuck in the middle of a Spaceballs marathon, although I wouldn't have changed the channel, but an attempt by our IV stand to conduct some sort of sleep deprivation experiment on us.  Thankfully, Jayne is fairly resilient to outside noises when he's deep asleep.  After he got his midnight benadryl, his stomach calmed down and his sleep came easy and peacefully.  While Shay and I were denied our own drugs, we managed as best we could, waking only occasionally to change his diaper when it was full and to feed him somewhere in the wee hours of the morning.

It's become the norm, having him fight sleep after dinner and lights out.  Part of this is due to the chemo, part because the hospital routine has seriously messed up his sleep schedule, and because there's someone in here, checking on him, every two hours or so.  If you haven't ever met Jayne in person, let me tell you, he's pretty amiable and, unlike his father, fairly social.  He loves people, even new people wearing yellow masks.  He likes to study them, observe them, smile at them, and talk to them.  He's an entertainer, he has to make sure that everyone is having an acceptable amount of enjoyment whenever they are near him.

Yesterday, we changed his broviac dressing, so that meant that he would get a bath (his favorite) and be surrounded by three nurses and his parents.  During his bath he splashed and splashed, having the time of his life.  He also wanted to make sure that Shay and I were having a good time watching, occasionally looking up at us to smirk.  After we wiped the walls and counter dry and toweled him off, it was time to change his dressing.  As per usual, he took it like a champ, looking from person to person and then to large, spinning light Shay was holding.  He didn't fuss from the procedure, he didn't squirm away, just looked at everyone in turn, making sure that he knew what they were doing.

When it was done, he showed off his sit up skills, he smiled for the nurses, grabbed at their hands, and was generally the happy baby he usually is.  We got to carry him around, unhindered by the IV stand, as they changed his lines.  I spun him around in circles, first one way, then the other.  It was the first time I'd been able to do that in a long time.  When we both started to get dizzy, we stopped and he took a small nap.

He has also discovered a new game: Eskimo kisses.  Mild racism aside, it is pretty damn cute:

As I said before, he's sitting up (as long as we hold his legs, he hasn't gotten it completely down), he can sit up by himself and lift himself up onto his knees.  Like I said yesterday, his development is not being stunted in the least, it's just unfortunate that a lot of this growth has to be from within sick bay.

Thanks to everyone who is supporting us, we appreciate whatever help you have offered.  I know that there are a fair amount of people who have given up some of their time in trying to come up with ways to help Shay and I financially, not least of which is Cherla, Shay's sister, and Kristen, who is working on fundraising opportunities in the White Mountains.  In reality, there are too many people for me to thank who have pitched ideas, written lyrics, drawn pictures for t-shirts, and so much more that I couldn't possibly name them or thank them enough, so a simple, general thank you must suffice.

As a final aside, my best friend Kevin just had a daughter a couple weeks ago, right before we first took Jayne down to Phoenix oh so many days ago.  In a show of infant solidarity, Kevin sought out matching orange onesies, one for Robin, his daughter, and Jayne.  Clearly written on the left breast has been our constant mantra, our go to, and something that I cannot agree with more, simple as it is: Fuck Cancer.