Well I probably brought this on myself but for some reason I decided to do a little more online reading about Ichthyosis and found a website with a message board which I am thrilled about. There seems to be a wealth of information, but with that comes good and bad.
One mom on there has a son with Ich and she said that her son peeled around 4-5 weeks and had healthy clear skin and then 1-2 weeks later started peeling again, so just b/c there is clear skin underneath doesn't mean that its going to stay that way. That's really really disheartening. I was trying SO hard to stay positive and look at all the good things but this is just not what I needed.
We aren't supposed to see our derm until Sept but part of me wants to see her again this week and have her look at Kallie and see what she thinks as of now, although, I am not sure she can tell me anything I don't already know.
I just can't imagine Kallie dealing with this for the rest of her life, its so dry and scaly and it just looks awful. I can deal with this if its just this one time but what if she looks like this forever? It just makes my heart hurt so badly I don't even know what to think or how to feel.
Saturday, June 27, 2009
Feeling Discouraged about Kallie's Skin
Posted by Kati at 5:13 PM
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1 comments:
Hey girl, I know this is hard and I really feel for you and what y'all are going through. You are one tough girl and one if the strongest people I know. If this is something she has to deal with for the long haul, teach her what you know. That which doesn't kill you makes you stronger. She'll be a strong, confident girl just like you. Keep your chin up and she'll learn by example. Love ya and praying for you all!
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