Friday, May 7, 2010

per request...

There hasn't been much to tell, so I haven't wanted to rant and rave on the blog again. *feels little embarrassed* Sorry you all had to listen to me whine. I would delete it, but I believe it good for posterity to show your bad side with the good.

Claire has progressively gotten better with her scratching. Each day the fits became less and less. This morning---nothing. We have been on the phone with doctors everyday. They always want her status report, which makes me feel reassured that we are trying as hard as we can to do the best things as possible.

Wednesday was much the same as Tuesday, but I started to understand her needs for the scratching better. I don't believe that meds do very much for the itching. An hour after I dose her with it, it will still come on. Oh well. Starting to wind down so it doesn't matter.

Yesterday we took her a step down on the dosage of the steroid. She ran a low-grade fever and the rash was present, but it looked a LOT less severe. She still took quite a nap. I was able to convince a good friend from high school to come over and just talk to me. Much needed adult time. Helped a lot.

Today the doc ordered some tests to be done. Claire did NOT enjoy going to the doc, and we tried to prepare her by saying things like: "we have to get an owie today, sis, but it will be over fast!" We brought her a new toy that was sent from our good friends, The Farvers (from JC, Oregon). She liked it in the waiting room, but then screamed bloody murder anyway. She still won't answer what a cow does, where her belly button is, or things that we have used to try and distract her from previous pokes and tests. The blood draw was horrible because they couldn't get the vein to bleed, so they had to move the needle a TON and then restick her and move it again. She was so upset. but, as soon as it was over, she stopped crying and asked for "water". she got a sucker instead. Not something I prefer to give for pain, but she probably needed the sugar.

Later, driving by the hospital, she said, "Owie, C?" She's quite the kid, if you ask me.

they are testing her inflammation levels (ESR and CRP), her compliments (something with the immune system), her liver (a level they need in JRA diagnosis) and her white blood cells. there's something else, but I don't remember. It was interesting to me to notice that they are not checking her ANA, but they don't think she has that type of JRA. Okay, you know better than me, but I would sure have liked to ruled it out.

We'll find out more on Monday.

Some people have asked what pseudo serum sickness is: short answer---I don't know. Long answer---I still don't know. When I tried to look it up, it only brought up serum sickness. This being pseudo serum sickness makes me even MORE confused. I asked the doc that calls me everyday to send me info, she doesn't have any---not very reassuring to me. The rashes they have pics of do not look the same as what claire had.

(not Claire, just googled it)


24yearOldTeEnAgeR said...

I don't even know what to say.
Just a strong urge to drop a comment. You'd be fine.
Your family'd be fine.
Your baby'll be fine.

Lauren said...

Glad to hear that there isn't any more bad news, and we hope to hear more good news soon. Your family is still in our prayers. Keep us updated. And 'ranting' posts are fine, though I didn't think you were ranting at all. You're a good mom.