Friday, September 14, 2007

Day 2 after her 6th treatment


You can't tell just how bumpy they are here, but you can see all the spots.




See, there's a spot that's not so spotty underneath her eye.

Her foot.

With a little guidance, she takes down right good pictures.


Pink 'bu tan zi' (blanket) and, I think that's our thermometer.

Reese took a shot of her face. There's others too.

Our cat, Elsie.

We haven't quite figured out the getting away from the subject part...



That's a really good one...

I went back through my mom's emails and found the email from Serena at China Care that told us how many times she'd had laser treatments. Yesterday was her 6th treatment on her face, and her 1st on her legs.

She's acting more her normal self, although she's walking a little funny (trying to keep her pull-up from rubbing her legs where they've been lasered). Poor baby can't even sit on the toilet, because it hurts the back of her thighs.

Some of the spots on her face are starting to fade out already. I let her play with my camera so I'm gonna post some of the pictures she took. My little budding photographer. :) She has some pretty artistic shots.

A phrase we hear a lot right now is: "I gots a boo-boo." Yeah, baby girl, you gots a boo-boo...

The back of thighs and calves are blistered quite bit, really bumpy. It's understandable that it hurts. I'm not sure if the major blistering is normal for first times or not. But the back of her legs look like ranges of little tiny hills, they're so bumpy.

Oh, and also, we got the results back from her MRI. She's as normal as can be. No brain involvement at all. So I believe she has Type 2 Sturge-Weber Syndrome.

Type 2
This type involves a facial angioma and the possibility of glaucoma, but no evidence of intracranial disease. There is no specific time-frame for the exhibition of symptoms beyond the initial recognition of the facial PWS. Throughout the life of the individual, interrelated symptoms may manifest in glaucoma, cerebral blood flow abnormalities, headaches, and various other complications. Additional research needs to be conducted on this type of SWS to determine the course of the syndrome over its natural progression.

This info is courtesy of The Sturge-Weber Foundation.

4 comments:

Charlotte said...

Poor little girl ! It makes me cringe to look at them ! Hope it heals fast and is worth it !

Charlotte
www.rachaeljanew.blogspot.com

Liene said...

She looks like she's feeling a little bit better. I couldn't even imagine having to go through that. She's very brave! I've had IV's in the top of my feet and it hasn't been too bad. Especially if they use the numbing cream first.

Hopefully she'll recover pretty quickly.

A 5 time mom said...

Thank you the updates and your informative website.....and I agree, Reese is truly brave and a real trouper as I think I would be whining all day long if I had to endure what she has endured!

Beckie

Jaime ♥ said...

She is just a ray of sunshine. Everytime I look at her face I smile, even though I am sure everything she has been through has been painful and uncomfortable. She is a beautiful blessing. I hope she has a quick recovery.

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