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!

caw caw

R's big accomplishments lately are saying "JET!" (actually he says DET) and making a raven noise on cue. When the winds are out of the north, giant cargo jets fly over the neighborhood about every two minutes and stop everyone in their tracks. So jet is the big word. His first word was 'uh-oh', but he got bored with that I guess. At 15 months, T was working her way up to saying 'Afghanistan'. More proof that girls use big words and boys make animal sounds.
I intend to get some pictures stuck in here somewhere, but I've been too lazy to figure out how to transfer photos from the camera without the cable that came with it. I know Grampy can help me so I'll burden him with that tomorrow. I mostly want to update that profile photo and maybe immortalize this post-prednisone hairdo which my own sweet old grandma felt compelled to tease me about. I will soon have it chopped off in hopes of evening out the new growth spikes with the five hundred or so strands which refused to give up. I will of course post pictures of the kids & grandparents.
Healthwise... we've all had yucky colds which haven't completely gone away yet. I saw my doctors last week and we planned to start another doubling of my Cellcept dose - but my white blood cell count was so low, we had to put it off a bit. The rheumatologist is puzzled with my symptoms (lupus) not matching my lab results (scleroderma). The pulmonologist is puzzled that my lungs sound so clear yet look so horrible on CT. The new echo results came back with a pressure higher than I'd expected, but I've lost a bit of confidence in the accuracy of echocardiograms when it comes to pulmonary arterial pressure. I'm sticking with the result of the heart cath from January, 62 I think. I need to try harder to exercise and eat less sodium. And stop my oxygen-cheating.
The other half back in Laramie has been busy. Among their recent activities: hockey in Rock Springs, overnighting in North Platte, downhill skiing at school, the school musical, Girl Scout World Thinking Day, Girl Scout cookie sales, adjusting schedules for Spring Break, growing out bangs, etc.
Ugh. LittleK whines even in her sleep!

Research Night

I've just spent a few hours looking up STUFF. I should have been sleeping but now I know more about anticentromere antibodies, ground-glass opacifications, right ventricular functional status and PH prognosis. I also finally registered with Medscape.
R had an appointment today, to find out if he's allergic to eggs. We waited in our kiddy-decorated linoleum holding cell for probably an hour before they actually did the skin-scratch test. After waiting another twenty minutes we found out the result was positive. So now my family is officially an Annoying Allergy Family. I honestly have felt close to zero compassion for those families whose kids go to school with my kids, who have to pressure the entire school district to actually make a "Peanut Policy" and a "Tree Nut Policy" and a "Birthday Snack Policy" and on and on. Serves me right I suppose.
LittleK's presence is usually a guaranteed stressor... for me, at least. The chatter, demands, refusals, picky-eater habits and whining just add up. So I tried to not bring her along to the allergist... but she was dressed, ready, and insisting on sticking with me. She also PROMISED (her idea) she would NOT whine, yell or get bored!!! As soon as we were out of the driveway she whined that she was bored - so I said I'd just turn around and bring her home. Her response (in her sassiest DUH, MOM voice) was that she'd promised not to whine at the hospital, not in the car.
I had no comeback for that but I now know I should probably get her promises down in writing.