Tuesday, May 31, 2016

Ichthyosis Awareness Month 2016

It's Ichthyosis Awareness Month! I know I am about 30 days late, but better late than never! I have been without a desktop for months and writing on the blog using a small device is rather challenging to do! Nonetheless, here I am trying to do what I set out to do by starting this blog.

Learn more about ichthyosis and how you can help at the FIRST Skin Foundation!!!! 

Here is an update on the boys:

Evan is doing amazing! He is wrapping up his Kindergarten year with a bang! He started the year off with little mobile independence and now he is RUNNING around the halls in his walker. He is probably the only kid in school who is "allowed" to run! He has accomplished his Kindergarten goals academically and has pretty much accomplished his gross/fine motor goals as well. Evan continues to have a extreme love for school and I can only assume a lot of that love is thanks to the amazing care he receives from his aide, nurse and teachers. 

As for Evan's ichthyosis, it is the same as last year, the year before and the same as he was born. Ichthyosis does not change or get better over time. Luckily we have been able to avoid any serious skin infections. I like to attribute that to our obsession with keeping his skin in its best condition possible (bathing 2x/day, min of 5 head-toe aquaphor applications/day and intense exfoliation: keeping him as scale free as possible). We still battle with the dry conditions in the winter and the heat, now that summer is at our doorstep. I honestly wish the AC fairy would come and magically install central air in our home! Fighting with window units all summer is quite stressful and nerve wrecking. But as stressful as it can be, ichthyosis is our normal and something that just comes with motherhood, for me.

Evan is delighted to be a big brother and is such an amazing brother to his baby bro. Though the tables are turning a bit since Cenzo is able to walk and move about. Evan, still, has never seemed to be frustrated or discouraged that his baby brother is more mobile than he is. Evan only encourages Cenzo and cheers him on when he accomplishes the milestones that come so easy to most children. Evan truly is such an amazing child!

Side note on Cenzo: after his most recent cardiology visit, he "graduated" to annual check ups rather than quarterly! Everything seems to be the same (with the tumor) and not causing any issues for his heart! Good news on that end! Phhheeeewwwww!

Now for your viewing pleasure, my boys rocking out to Evan's favorite song!