Monday, October 5, 2009

a random but thorough update

It dawned on me that I had not updated recently! Whoops!

Everything is going well. Working on our appeal yet again. So keep your fingers crossed! We are still using cetaphil on Genevieve and it's working amazingly well! Her feet are still soft. Her skin has toughened up and she's no longer getting sores that easily. And she seems a lot more comfortable. Oh and her odor is gone!!! Woohoo! She is sitting up on her own now, and never wants to lay down. Her favorite game to play is "Genevieve says..." which is pretty much she makes a sound, and you try to make the same sound back to her. She loves it. She happens to be curled up next to me as I write this. This goes to show she is very much a mamas girl. We laid her in her crib to go to sleep and she wouldnt stop screaming. After a long time, we decided to just bring her into bed (which very rarely happens), and Andy laid her down next to me, she reached up and grabbed my hand, nestled her head up next to me and fell asleep within 5 minutes. MAMAS GIRL all the way. She now has PT every other week, rather than weekly. We have finally found pants that go on and come off of her very easily without hurting her skin. Weather here is getting really cold, so Genevieve has a very cute hat collection going (ok so only two so far, but they are adorable!). Trying to figure out what to do for her feet this winter since socks usually end up with sores on her feet.

So enough of the random-ness. Not much is new on our end.

Did you know that this week is National Icthyosis Awareness Week? Well, it is. So as a mother to a child with ichthyosis, here is a piece of ichthyosis information for you... Ichthyosis is a family of skin related diseases, characterized by dry, thickened, scaling skin and effects more than one million Americans. I will post more info through out the week :)

one of Genevieve's new hats

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