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Old Mon Sep 20, 2010, 12:23 AM
Jen B Jen B is offline
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Join Date: Jun 2009
Location: Glendale California
Posts: 42
Ethan is still doing great - we are at day +313, almost a year I can't believe it!
Our doctor is taking his Gengraf reduction VERY SLOWLY! A bit every 2 weeks or so. This last 2 weeks he decided not to reduce as Ethan has been showing rashy blotchy dry skin. The doctor doesn't seem to think it is GVH, but my gut tells me different. Ethan isn't too bothered by it, but it makes me antsy to see these transitory blotches go by on his face, back, stomach and arms. We have been using a topical steroidal cream, but today, there were too many places to put it so I just put him to sleep without. I will see where these rashes are in the morning.

We were instructed to keep Ethan home from school this year - his first Kinder year. I am home schooling and working a few hours a week in a friends office. My husband found a freelance job a few months ago after 10 months of unemployment. Crappy economy.

Nicole, did your donor ever write you a letter? Just curious. I sent a few off to our donor - hard to keep it so generic - no personal info so it ends up being a blubbering "thank you, thank you, thank you!" note.

Perusing your site, I saw that you went to Florida's Give Kids the World and DisneyWorld. I think we will be taking Ethan's MAW trip there too next year. Just hoping it is after he is off his immunesuppressants.

Thank you everyone for all your words of encouragement. I feel so fortunate I found this site when I did.

Jen
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Mother of Ethan, diagnosed with SAA at age 3-1/2 Dec. 2008; Treated with ATG(h) Dec 2008 and ongoing Cyclosporine. MUD BMT 11/10/2009, 10/10 match
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