My Story

Noah was born with a port wine stain birthmark on over half of his face and parts of his body. At one week old, he was diagnosed with Sturge-Weber Syndrome. Like the birthmark, it is a malformation of blood vessels, and could progress to the surface of his brain. SWS is rare, occurring once every 30-40,000 births. Another symptom of SWS is hard to treat Glaucoma.

Journal

Wednesday, June 17, 2009 3:07 PM, CDT


I just thought I'd update you ~ It's been a little over 3 weeks since Noah had his laser treatment.  The "dots" are gone, although you can still see where they once were.  He knew he had the marks on his face this time and would touch his face and say "owie"... so it was a little more challenging to keep him from scratching the little tiny scabs.  We would hate for him to scar and luckily he didn't!

We took a little break from the contact lense for a while.  He was choosing to wear his glasses and did pretty good at keeping them on, until he broke them.  Once I got them back, he lost them... so we started the contact lense today and it broke his heart.  He really, really hates it!  It breaks my heart, too, knowing that he treats it so traumatic.  But, life goes on and we will be grateful this is all we have to go through:)

I hope you are enjoying your summer time!!


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We would like for you to sign Noah's Guest Book! Write a prayer, or a scripture, or just say "hello". I am also doing a prayer scrap book for him, so you are more than welcome to send him a prayer through email, a card, mail, or on here.

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University of Iowa
IA