The Jingle Bell run was successfully accomplished by half the family, the other half retired indoors as soon as possible because it was so cold.
We discovered a new and interesting fact about LMI: She really hates being cold.
The story of Sunday:
After an early start and a somewhat skiddy trip to the freeway, we made it safely into Seattle. After parking in the underground car park of the Pacific Place Mall, the children were bundled up in multiple layers, and in LMI's case the outer most layer was her ski suit. Mittens and hats all round. We then ventured into the great outdoors. With 20 seconds of being outside, LMI was wailing because her face was cold.
Being a caring parent, I pulled her hat down and her collar up, so only a narrow strip of face from nose to eyebrows was exposed.
We checked in with some other members of Team Pip, and then the Fingers Family proceeded to the start line. LMI continued to intermittently wail and gnash her teeth about the temperature. LMI and I waved PuffyFingers and the OH off on their 1k jaunt around the streets of Seattle.
As I still refused to take her indoors, because we needed to wait at the finish line, LMI decided that the cold could be coped with no longer, and took the only option available to a 3 year old. She lay on the pavement, face down, and cried. As I was still doing the caring parent thang, after controlling my laughter, I pointed out that lying on an ice cold pavement really wasn't going to help her warm up.
Fortunately, PuffyFingers has a good turn of speed for a 5 year old and we really didn't have to wait too long. Just as well, LMI might have frozen to the pavement if she'd had to wait much longer.
Then we cheered the OH off on the 5K run and the girls and I retired indoors for hot chocolate and cookies (or coffee and a scone in my case). I had a moment of guilt when PuffyFingers was complaining about the pain in her fingers as they warmed up. I don't think letting arthritic fingers get really, really cold was particularly nice of me. But I truly thought that the running would help keep her warm, I'll know better for next time.
Many thanks to everyone who sponsored us. Sorry that we didn't all achieve the 5K as intended, but at least two of us participated. And I think you'll all forgive me for not torturing LMI any further by insisting she walked 5K in the cold.
You know your children are growing up too fast when they can put a nasty tasting tablet on their tongue and swallow it quickly with a gulp of juice. I've known adults bulk at swallowing tablets. PuffyFingers was shown how to do it yesterday morning, and did all by herself this morning.
And yes, the tears did well up, but she didn't know that.
It's been a busy few weeks with a number of medical appointments. Last Monday we had PuffyFinger's eye check up. Children with her type of JIA are meant to have 6 monthly eye check ups as they are at a significantly higher risk of some eye inflammation diseases; irisitis and uveitis (one day I'll look up what they actually are...). She got the all clear, which was good news.
Yesterday it was the dentist. PuffyFingers got the thumbs up there too. She's doing a really good job of cleaning her teeth all by herself, with us just checking occasionally. The parents got a bad mark though; LMI's teeth showed up a ghastly purple with the disclosing solution. I'm blaming the Other Half. I'm sure if I'd cleaned her teeth they'd have passed the disclosing exam.
And today it was the rheumatology check up. If I'm honest with myself, I did know that at least one finger had active arthritis again and probably two (I'd spotted the middle finger on the left hand had suspicious puffiness at the weekend). But it was a shock to find out 4 joints are active right now. 2 in right index (pointer) finger, one in her left middle finger, and her left elbow.
The doctor waded through her old notes, the finger joints are all ones that have been active before that were knocked on the head with steroid injections. The elbow is new. I don't know if the elbow counts as a big joint of little joint in the JIA naming conventions, I suspect it's a big one. If so then PuffyFinger's diagnosis remains as confused as ever.
I totally expected the doctor to say we'd go for another round of steroid injections as they've worked in the past and she typically stays arthritis free and medication free for several months afterwards. So I was surprised when the doctor recommended going with methotrexate instead.
As methotrexate takes at least 6 weeks to kick in we're going for a month of prednisolone to try and whack it on the head quickly.
More about what these medications are in the next post, when I've wrapped my head around it. I'll leave you with the thought that I'll be doing the weekly injections myself. At least it's only once a week, let's look on the bright side.
It's that time of year again. I've just signed the whole family up for the Jingle Bell Run (or walk in my case) which raises money for the Arthritis Foundation. LMI and I will be walking 5K, the OH will be running 5K, and PuffyFingers is going to run 1K.
This will be our third year, but it's the first time PuffyFingers has done the children's run. She's walked with me and LMI in previous years (or been carried on my shoulders).
We're part of a team, "Team Pip", which is organized by a lady who runs an exercise class that I participated in for a while. Our team goal is to raise $5000 dollars. Our family goal is to raise more than last year.
I'm bemused as to why LMI's daycare teachers think that imitating her Britishisms is cute or funny. She's 3 years old. She won't understand why they laugh. I don't think it's funny. The teachers would never so the same things to children where English was their second language. So what is the strange appeal of the British accent?
The name de jour is JIA. Juvenile arthritis was once thought to be like full blown rheumatoid arthritis (RA) but in children rather than adults. Hence JRA. And then some bright spark pointed out that juvenile arthritis isn't like RA in all respects and along came JIA as a moniker.
JRA is still in use by many people, but JIA is seen as being more accurate these days. If I could be bothered I'd do some research and find out just how long the term JIA has been in use. But I can't be bothered.
Juvenile - Children (or not adults, I'm sure lots of teenagers will get worked up at being labelled a child)
Idiopathic - (this is the good bit) Without Known Cause. Yes, indeedy, idiopathic means the doctors having got a flaming clue what causes this.
Top quote: Isaac Asimov noted a comment about the term "idiopathic" made in the 20th edition of Stedman's Medical Dictionary: "A high-flown term to conceal ignorance." (courtesy of wikipedia again).
I'm happy to relate that according to the same page that they got it slightly wrong in House. The lovely Hugh Laurie (House) says that idiopathic: "comes from the Latin, meaning 'we're idiots, because we don't know what's causing it.'" But, unfortunately, idiopathic comes from Greek, not Latin. Whoops.
So there it is, PuffyFingers and many other children like her have inflammed joints and no-one knows why.
Today's thrills and spills include going to the post office to apply for a new US passport for PuffyFingers. Officially, I'm sat here printing the passport forms. Unofficially, I'm typing up this entry (telling the OH the blog address could have been a mistake). The old passport runs out in December and we hope to make it over the border into Canada for Christmas. PuffyFingers could leave the US and get into Canada on her British passport, but trying to get her back into the US might be somewhat problematic.
The first step was to get an accurate height to fill in on the form. I was totally prepared to add a bit on to the height from the last hospital trip, but OH took great delight in producing a tape measure and marshalling* the troops to stand at attention against a wall. 47 inches was the result.
The passport application process is amazing, as she's under 16 we have to produce all the same documentation you do for applying for a first time passport. Obviously, US officialdom believes that at some point in the last 5 years my own birth certificate or the OH's or, indeed, our marriage certificate could have changed. Plus, we all have to appear in person; PuffyFingers, me and the OH.
I realise all that all of the red tape is probably a very sensible precaution to make sure children aren't being smuggled out of the country when families break up. But, right now in the Fingers household, the trauma of trying to find various bits of paper, that prove we are who we say we are, is a tad too much. And I'm blaming George Bush (why not? I haven't blamed him for anything else since I woke up).
We haven't even got to the photo stage yet. It's going to be a long morning...
The Naproxen is going down well. It's obviously heavily laced with something attractive to children (apart from being virulent orange). Puffy consumes it with delight. LMI is rather jealous that she's not getting any medicine.
* Spell check doesn't like "marshalling", am I wrong? Or am I being strangely British again?
One more blog to read, and life is already so full. Does the world need this blog? Probably not. Will it help me to write it? Probably yes. Therefore, dear readers, I'm going to rattle on for a while and I thought I'd better introduce the cast of characters chez the Fingers Family.
There's PuffyFingers herself, a small child of the female persuasion. She's just turned 5, going on 15.
The temptation to nickname PuffyFingers younger sister "Snot Face" is quite huge, but I shall resist. After all, I could lumber her with it for life, and I am confident that she will at some stage grasp the intricacies of tissues and nose blowing. So, for the time being, she shall be known as Little Miss Independent, or LMI.
Then there's the grown ups: I'm Andy, and there's the Other Half.
There will no doubt be guest appearances, especially as when we get visitors they tend to be here for a while. No-one thinks it's worth coming all the way from the the UK to visit us unless they stay for at least a week, or, in the case of my parents, 5 weeks.
PuffyFingers has been off the Naproxen since May, but today we start again. Big sigh...
I noticed her right index finger (pointer finger for the Yanks) looked a bit swollen a week or so ago. This morning she complained of pain in it and that she couldn't bend it. All bad signs; we've been here before.
A call to the rheumatology dept confirmed my thoughts and she starts back on the Naproxen 5ml twice a day at dinner this evening. Unless anything gets drastically worse that's how we'll leave it until her regular check up in December.