Wednesday, July 25, 2012

Progress on a Couple of Fronts

Yesterday was our long anticipated visit to our regional referral center, Children's Hospital in Seattle. The little girls had been there in early 2005, shortly after they got so sick, to rule out Job's Syndrome. Since then, they (and later Tarquin after he was born with the same disorder) have been followed by a local immunologist. Since they have no diagnosis, and our immunologist was unable to find another case like theirs, they have been receiving management of each symptom that arises. This is not a negative judgement on their health care at all. We have had some horrible issues with health care, but not from their immunologist or the nutritionists that we work with. Given the complicated and unknown nature of this all, the immunologist has been just fabulous over the years and has put so many of her personal hours into researching our children's situation and care plan.

But . . . new variants of Job's Syndrome have been discovered since 2005. There have been discoveries about specific genetic mutations that are involved in immune disorders. The three of them got a new peds pulmonologist, a youngish guy (what am I saying? They all look young to me!) who started stirring up the waters again. He started talking again about Zolair, experimental for this purpose, and looking at genetics. I've always been horribly uncertain about the former, but the latter? OH yes.

So up to Seattle we went yesterday morning, arising at the hour we would if we were real goat farmers, and braving the Seattle gridlock. Wow. Really a fabulous experience this time. The upshot is that all three of them got massive amounts of blood drawn (11 tubes for Lucinda - 2 of them big honkin' green tops), most of which were screens they've had over and over, but each of them had DNA banked and entered into the research Children's is doing into this area, and Lucinda is having genetic mapping done. Only one of them needed that done, as they all obviously have the same disorder. If no useful information is obtained from this, the NIH will be contacted, as they're doing deeper genetic mapping and "would probably be interested in this DNA".

The neat thing about this is that they're kind of in the research loop now. There are so many advances being made right now in this area of genetics and immune response/disorder that even if there's nothing right now, there is such basis for hope in their lifetimes. I feel like I've been driving this train for so long, pushing (fruitlessly) for movement in their diagnosis, and suddenly someone else has taken over and is actually getting somewhere. I didn't realize how heavy that burden was until it was removed suddenly.

And on a lighter note, I had a puzzling goat task. I needed a "buck rag" now that we're poised to get the goats bred. We have a handsome buck all picked out and lined up, but his owner had just shampooed and clipped all her goats for a fair, so he isn't currently stinky! She recommended that I get a buck rag from someone local. Uhmm, OK, the only local Nigerian owner I "know" (only via email) sold her goats. I looked through Craigslist and chose the closest Nigerian farm, took a deep breath, and wrote the weirdest email possible. How on earth do you seem sane when writing, "I know I'm a stranger, but can I come over with an old towel and rub your buck's head?" Sigh. The Craigslist lady was amused and very kind about the whole thing (I'm certain I over-shared) and one of us will go out there tonight to rub a stinky buck head :-).

Our goat girls are just too dramatic in general to tell if they're in heat. The traditional ways of knowing are: discharge (nope), rubbing up against a fence (they do that all the time just for amusement. Or itchiness.), "flagging" their tails (dinner, seeing a squirrel, or a juicy leaf nearby will all do that), and being louder than usual (which is called a weekend around here). So I'm definitely calling getting a buck rag progress toward eventually being in milk! The theory is that when one of them is acting scream-y we take the buck rag out and if she's in heat, she'll think it's the most enticing thing ever, but if she's not in heat, she'll be all "blah" about it. Gosh I hope this works.

Well, that's it from this odd corner of the world!

Sunday, July 22, 2012

I’m Still Here!

Just summer busy. Well, summer and Clara has retired from the kitchen, which keeps me busier. We are driving, driving, driving.

Here are just a few highlights since the last post.

Sophia graduated from homeschool and got her associate’s at the same time.




Which of course demanded a gluten free mocha caramel cheesecake, right (hard to see in this pic – the stars were sort of shiny)?



I had a birthday (it’s my birthday, I’m gonna have some sugar) which meant more gluten free chocolate:


No, that’s not bacon on the top! Caramel, silly!



My birthday meant that the goats had birthdays, too. Happy first birthday, Sarabi!



Happy first birthday, Selkie!




They got summer haircuts, as you can see by their sleek looks above, and a vet visit for bloodwork in preparation for breeding them. This backyard is proudly CAE/CL/Johnes free :-).

I have started a new blog just for the cooking journey I’m undertaking, trying to enrich my skills. It’s called “mama’s sabbatical” and you can find it here if you’d like. There aren’t any recipes. I’m merely wandering through the stuffed cookbook shelf (and by shelf, I mean an entire Billy bookshelf of cookbooks, not just one shelf) in quite the adventure, blogging as I go as kind of a scrapbook of food. The Patriarch and I are cooking together on Sundays as an in-house date night.

I had another biopsy in June, with fewer yet cancer cells found, although I’m not in remission yet. I had a vacation for a few weeks from the nausea, then it returned, although not as bad. I haven’t had to go back on the Zofran at this point, thank goodness.

I’ll blog soon on projects happening – the little girls have done some adorable dolls, and Araminta is making the cutest project for Tarquin’s birthday, which is coming up soon.

Also upcoming, the three youngest children were referred again to our regional children’s hospital, which is in Seattle, to see if they fit the profile for new variants of Job’s Syndrome which have been discovered since their first trip to Children’s in 2004 (the girls – Tarquin wasn’t born yet). I’ll keep you posted!

Sorry for the really long silence. I have good days, when I rush to get everything done, and bad days, when I don’t make it downstairs to the computer to blog. I tend to be better about keeping the food blog up as I’m doing that as a discipline of sorts.

And all of the summer regular fun goes on as well. Fiddle Camp, two separate Nisqually camps, Nisqually events, church events, summer jobs that need a mama chauffer – all happy summer events. Hope all of you are having a fabulous summer!