Feeling Discouraged about Kallie's Skin

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.

Kallie's 1mo Check-up

We had a great appointment today with Dr. Calametti for Kallie's 1 month check-up. She weighs 10lbs 8oz and is 23.25in long. I compared that to Kennedy Jane and they were about the same size but they look so different b/c Kallie is all skinny legs and arms and Kennedy Jane was short fat legs! Dr. Calametti was very pleased with her growth and thinks she is doing really well!

Kallie Eye Doctor Report

Well it wasn't as good as I had hoped and expected. I guess b/c all our other appts have gone so well I expected this one to as well and was a bit disappointed. He said anatomically her eyes are healthy and her cornea is healthy, all VERY good things! He said that she was prone to near-sightedness, which isn't surprising b/c I m blind as a bat without contacts. He said that her eyes were dry and that was concerning b/c if they get too dry they can cause damage to the cornea, which is healthy right now. He said worse case scenario, which is about a 10% chance, he would have to sew her eye partially shut to protect the cornea but he said that was highly unlikely. He said that here blink relfex was diminshed but that was b/c the skin is too tight around her eyes causing that to be difficult and he expected that to resolve itself once the skin loosens up.

He put her under a blacklight and I could see the skin starting to peel around her eyes so that is really encouraging, and she is starting to get wrinkles on her eyelids and that thrills me b/c it means the skin is softening up which is a GREAT sign!! So hopefully we just protect her eyes until they can protect themselves.

So we are to use artificial tears ALL the time, I mean seriously like every 15mi to make sure they stay plenty moist. He wants us running a humidifer at all times, so we are getting a whole house humidifier that will run through our AC unit. I am pretty excited about that b/c it will really help all of us!

So I had a good cry in the car on the way home b/c its really overwhelming. Not that all of this hasn't been serious but when you start talking about your child's eyesight that's big scary stuff. But I feel ok about things, its just something else we have to deal with. I just pray that things keep going well with her skin and when we get to this next layer that its healthy and soft and her eyes get better like we expect everything else to.

We see him again in 4 weeks and hopefully her eyes are not as dry and things have improved. Please keep praying for us.