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!