3:44 PM

Toddler and baby albinism tips and tricks

We are nearly at the 6 month home mark and I have to say I am already starting to feel like an albinism expert ;).  At the start although I knew the facts I was having a lot of trouble doing simple things like keeping sunglasses on an uncooperative toddler and how much sunscreen we really needed.  In the end it was not that hard to accomidate at all it was mostly just adjustment for her and new mom worries on my part.  I am happy to share with you some things I have learned to make life easy:

Homemade sunglass straps:
There are a few brands of sunglasses out there that have a special band instead of the firm arms.  I was not a fan of these.  They are expensive, not too cute, and just did not give our girl enough coverage.  Her cheeks are bigger then her nose and her ears are bent down and floppy so regular sunglasses would not stay on either.  Even when she stopped grabbing at them they still came off when she was playing.  So I fiddled around and came up with my own invention.  Best of all it only costs a few pennies and I was able to add it to any sunglasses.  We are fashionistas after all.

Materials needed:

  • any pair of children's sunglasses, we love heart shaped and big round ones for maximum coverage
  • 1 pack of tiny clear hair elastics
  • embroidery thread (optional) 
First step take one hair elastic and thread it through it's self around one arm of the glasses where the arm hinge is.  Repeat on the other side.  Continue making a looped chain of elastics to the desired length.  Tie the two ends together at the back.  It should look like this:
You can choose to stop at this point but you may find that the elastics pull at the baby's hair or messes up a hair do.  If this is the case for you you can use embroidery thread to and wrap the elastic using a friendship bracelet technique.  This makes it cute and still allows it to be stretchy.  You can find a tutorial on making the knots here:  http://www.how-to-make-jewelry.com/friendship-necklace.html
This is the after shot.  Sometimes depending on the size and fit of the glasses we put the strap either above her ear or below.

Sun Shades
Even with sunglasses on Elora still finds the sun bothersome especially in the car and stroller since she is strapped down and can not avoid it.  We invested in this great double jogging stroller with two completely adjustable shades and it has the wheels to handle our off road life style.  It can be really hard to find a double stroller that has separate and versatile shades, they can make a full half circle unlike some who are attached to the seat backs.  Very rare to find this at such a low price point.  We love this stroller.
I don't know why every single infant seat comes with a built in shade but the toddler seats do not.  I found this one to fit our toddler car seat and it works pretty well.  There is still an area at the front where the sun comes from the windshield her but it is flexible enough that she will just pull it down over her eyes if it is really bugging her.  I was not a fan of the pull down shades that stick to your window because they blocked my blind spot and never seemed to give enough coverage.  The one thing about this shade is that the price point is pretty high in my opinion, so for our second car we re-purposed the sun shade from our old single stroller and that works just fine.  This one is very adjustable and does not impact the drivers visability.

We have found over all that Elora's photophobia is a larger issue for us than worries about getting a burn.  Every child is diffrent and our climate lends it's self well to kids with albinism, we find that we rarely need to go extreme with the suncreen.  We use a lot of work arounds like time of day, hats (with elastic bands sewn on) and UV clothing to keep the need for sunscreen at a minimum.  She really hated it at the begining, although it is better now we just got in the habit of using these other solutions.  When we do need to be out in the sun between 11-3 this summer we have used a spray sun screen that is "powder finish" waterproof with a 60 UPF, I have tried a few major brands and even a no name version and found they all do a good job.  The spray is nice and quick and the powder finish feel does not leave that feeling of cream that Elora really hated, especially if it mixed with sand it just drove her nuts.  Now that it is the end of summer I have bought a few UV suits on sale for next summer because they are also pretty pricey.  I even got to fuffill my dream of seeing her in a tinny tiny bikini when we go swiming or to the splash pad in the evenings.  I am really loving the beach at that time it's so pretty, we have the place to our selves and I am also enjoying having less heat.  It's been a real scorcher this summer it was great to do more of our things in the long bright cool evenings.
At the beach in the UV suit

Late night splash pad

Sun set bathing

Early morning play