Sunday, May 05, 2013

Sitting in Limbo



Sunday has been kind of slow, no medical developments, but we had the pleasure of several visitors. Thanks, friends.

The major downer today was that Stella has what appears to be a typical cold.  The type that she and every preschooler on God's green earth seem to have about 75% of the time.  Unfortunately, anyone with even as much as a cold is not permitted to visit Jeff's wing of the hospital.  Of course this makes sense.  I would not want to compromise Jeff's health or the health of any of the immuno-compromised residents of his floor.  I would hope that if/when Jeff needs to be more protected from normal little bugs, every other visitor on the floor would be just as cautious and considerate.  

But, if the estimates we received for the duration of chemo back when we thought Jeff had T-ALL end up to be accurate for whatever the ultimate diagnosis turns out to be, over the course of seven plus months of chemo, Stella and Jeff will simply not see much of each other.  We haven't talked about duration with Stella, in part because we don't know much, and are just taking this day by day with her, but the prospect of enduring separation like that is somewhat harrowing.  Thank God for Skype, I guess.

While I'm on the subject of hospital visiting guidelines - you must check in at the nurses' station and be truly healthy in order to see Jeff.  They'll screen you if they suspect you are ill.  And the number of visitors is also limited to two (give or take if the nurse is lenient) per room.  So bring a book or something to do, because you might have to wait a little in the guest lounges before you get to see the Zebra himself.  

The last thing I feel like sharing tonight is that I feel very thankful to be a parent these days.  Those of you who know Stella know her to be one spunky kiddo.  That has not changed.  Her silly spirit is especially endearing these days.  Unprompted, she re-instituted our before-bedtime dance parties which are so fun.  Her newest moves are "penguin spin" and "double roll the dice while hopping on one foot."  Usually her tongue is sticking out for the AMAZING dice rolling move.  

And Lydia, meanwhile, is more or less angelic.  Yes, she urped a huge volume of milk all over me this evening.  Yes she woke me up with a massive poop-explosion this morning, but these mundane baby events are keeping me focused on what matters.  And in the meantime, she is smiling more every day, she nearly rolled over today, and she cuddles.  Oh does she cuddle.

More later.  Love to all of you.

5 comments:

Erik Christensen said...

I'm still a bit in shock about the news, and your whole family is in our prayers. Your blog posts have been so helpful, and already have provided a great update on your lives that we have really missed out on since we moved away, so I suppose that is one small silver lining. :)

morgan cullen said...

oh those sweet and amazing little people...doing dance moves that rock your world and cuddling like super stars.

i do not know why God chose y'all to fight this battle. i do not have even remotely eloquent words to show how much this aches my momma bear heart.

i wish we lived closer so i could help. just know i'm there in spirit and y'all are in our every prayer.

Anonymous said...

I am so so so thankful for these updates, Katina. I think that we all wish we could be there supporting you in person. The time you are taking to keep us in the loop is a gift. Much love to you and Jeff and those adorable girls! xo The Kates

stacita said...

i really missed the voice of dirteens, especially because it seems as if you always find the light. hold tight to that light! sending lots of good thoughts and prayers.

xo.

dirteens said...

Thanks everybody. Blogging has been a fun (if depressingly inspired) way to get back in touch with all of you and I love you all.