I’m still feeling guilty for neglecting the blog for so long and since it’s a known fact that the internet is powered by photos of cats I decided to appease the internet gods by posting this picture of Calvin. I only wish that I could take credit for taking it, but this is Karin’s handiwork.
Liam has been battling through an increase in seizure activity over the last 36 hours or so. We’re weight adjusting his meds with his neurologist though and so hopefully after a few more doses we’ll have them managed pretty well again. In the meantime we let Liam sleep when he wants to and be awake when he wants to. The combination of post-seizure naps (whether any of us want him to nap or not; including him) and the time it takes his body to adjust to some fairly sedating drugs any semblance of a routine sleep schedule will be near impossible for a few days.
But, at least his mother and I have had plenty of nursing help and are well rested going into this ride . . . er, . . .oh wait, . . . damn. Ah well, we’ll get through it of course. We always do. Liam is doing just fine otherwise and the seizure thing is nothing new to us. He has been enjoying his time alone with Mom and Dad without nurses over the last two weeks and I’m willing to bet he won’t be very happy on Wednesday when we finally get a nursing shift and he gets a necessary break from mommy for a few hours (even though the farthest away she’ll be is upstairs taking a nap.)
Anyway, before I try to get a bit of sleep while Liam rests, here are a few programing notes…
I’ve decided to revive my old Twitter account. You can follow me at @PressureSupport. I figure that it’s a place that I can throw up links and cell phone pictures along with any other little tidbits not worth turning into an entire blog post. I’ve put up a widget in the left hand sidebar where anyone not on twitter can check those things out. Perhaps if I were still Twittering during my little blogging hiatus I would have had a bit more motivation or a conversation may have sparked something new? Who knows. Anyway if you’re on Twitter let me know it.
Last year this blog changed its focus and mission when I decided to start writing some essays in preparation for the Walk for Hasbro, a big fundraiser for our local Children’s Hospital. On April 30th Team Liam will again work to support the March of Dimes March for Babies, another charity and event very close to our hearts. I will be doing a series of posts about Liam’s 153 day stay in the NICU in the weeks leading up to the walk just as I did last year with the PICU Pressure series. In the meantime though please click the widget in the sidebar to the right to donate. Help us fight prematurity and help the countless families affected by it by clicking through and joining a team to walk or to donate whatever you can spare.
If you follow the Pressure via an RSS reader click over to the homepage sometime and let me know what you think of the redesign. Bonus points if you can identify what’s in the background image although it’s probably more obvious than clever. I also tweaked the About page a bit to make it more descriptive without overwhelming with details. For new visitors who don’t know Liam or his story I’m working on a FAQ page I can reference in future posts for his diagnosis and the equipment and services that make life here at Pressure Support a little different from most.
That’s all I’ve got for now. Liam’s still sleeping so now’s my chance.
‘Night all, and thanks for reading.