Wednesday, June 20, 2012


We're learning all kinds of new words at our house. 

This week it's 'Albinism'.  I knew instantly what she was talking about - an albino.  I have had ZERO experience with it and have NEVER heard that word before today, but something just sounded exactly what you'd call that if you needed a techy name for it.  If you're interested, this is what I found after 'google-ing' it. 

*Side note:  I'm not going to Google much.  I don't need to be freaked out and live in the 'what if' section of Down Syndrome.  Or life in general.  I'm working to get educated about the specifics for ALL of our kids, but too much info can paralyze me and then what good am I going to be to anyone? 

This may be a 'thing' she has.  The doctor wound up with 'plusses and minuses' trying to pin it down though so at this stage it's not a "FOR SURE" thing.  We'll be watching.  Wearing hats, sunscreen (which in general I'm not a *huge* fan of...don't hate me), and sunglasses - common sense and all that, with an extra dose of vigilism. 

In general, her occular health is fine.  Some nearsightedness with astigmatism.  There is a bit of Nystagmis (when the eyes 'shake') that she compensates for with head positioning.  So far, she's not needing corrective lenses althought that may be in the future.  Frankly, ALL the rest of us wear glasses/contacts for something so she came by this one as a HAYES trait and it has nothing to do with Down Syndrome.  It's okay.  We love glasses here. 

You'll know if I suddenly start ripping things out of the house that I'm more stressed about it than I say. 


  1. Hoping for the very best, Faith.

  2. Praying for you! You can come rip things out of my house if you need to. :) {{{HUGS}}}

  3. Praying for you guys.

    This is one of the sunscreens we use, It does not have any of the toxic chemicals that regular commercial sunscreens contain.

    We also use TruKids.

    You do have to apply every 2 hours, but we are fair skinned here and need protection.