Tuesday, December 16, 2008

Comments are welcome

You're all more than welcome to comment on my posts, and, yes, this does include you Mum...

I promise to try to respond to comments.

What to do when it's cold

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.

Sunday, December 14, 2008


The much anticipated snow has finally arrived. And we're up before the crack of dawn to get into Seattle for the Jingle Bell Run. Nice!

Friday, December 12, 2008

1st injection completed

We did the first methotrexate jab this morning. We all survived. More later...

Thursday, December 11, 2008

Children growing up too fast

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.

Tuesday, December 9, 2008

Methotrexate and prednisolone

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.