sunnier days

Days are longer now - the sun is still up at 8pm!
So many friends have reached out in the past year! I appreciate every word of every email and card. I confess I'm not much of a friend when it comes to responding. I'm really quite horrible at that as many people already know. It's right up there in My Top Ten Character Flaws. If I sat here long enough we could rank the Top Seven Hundred but who has the time?
My LittleK and I seem to be getting along better, at least for the past few days. We do really well when I remember to carry out promises I've made. I finished sewing her kuspuk - she loved it so much she wore it all afternoon and evening, then slept in it. I've got fabric to make two more and hope to finish them quickly now that I remember how.
I've taken up a couple of challenges lately: cutting way back on sodium, and giving R a haircut. They're equally impossible tasks but I've finally been using the part of my brain which handles creative thinking.
Gramma has been taking LittleK outside almost every day, to play in the snowy front & back yards and to try the scooters out on the driveway. Sometimes R goes too, once in awhile Grampy goes, and sometimes the outings are longer walks through the neighborhood or even on the trails in Kincaid Park. When it warms up I'll be spending time outside too.
R is adding to his vocabulary. "Sh" means 'fish', "Bubba" means 'bubbles', he has some variations on 'dog' and he also calls out "Mamaaaa" once in a while. He can point out where to find toe jam, where the bananas are kept, where the potty is, and what direction to go to find the garage. He has learned that it's funny to pass gas. I did not teach him that and no one has confessed to it... but Gramma is not above showing the kids how to burp vowels, so... K will surely cover that entire range of behaviors so it doesn't matter that R has had some early lessons.
I had another PFT yesterday and a 6-minute walk test. The PFT measurements show no change in my lung function except for an obstructive breathing problem which responds to inhalers. I was able to walk 200 feet farther than I did in the 6MWT a few months ago. The pulmonologist made clear the treatment plan of continuing Cellcept through June, and if we don't see improvement, she'll refer me to Dr. Ralph, the PH specialist at the University of Washington. I feel better in general, but my hands have been swelling for the first time since last March so I'm a little nervous about that.
I asked for a referral to ANMC's counseling services, to help me deal with the more emotional side of having a "life-shortening disease". It's impossible to describe the range of thoughts and emotions going through my head when I think about dying, about leaving behind my kids and husband and everything, all that feels like an unfinished life. I don't have one foot in the grave and don't plan to have that outlook, but the thoughts surface every now and then. I spend just about as much time thinking about new treatments for PH and the eventual lung transplant, how my kids will have to put up with me when they're teenagers and someday when I get to hold grandkids!