Friday, November 29, 2013


I have so much to be thankful for. As I am always thankful for my family and friends, I can never express my gratitude enough for the love & support they have given to me, to Joe and especially to Evan.

I am so blessed to have this little man in my life. He makes me smile constantly. He completes my life and maybe more so because it comes along with some unique circumstances. My world revolves around this child and even when I'm not 'thinking about him', I really am "thinking about him'.

It wasn't until recently when I was asked the question, in a FIRST interview, "What would you like to say to your doctors?" Before three words could even make it out of my mouth, I was in tears. They were happy tears, incredibly grateful tears. I had not expressed that emotion before. I had never been specifically asked that question before either. I have expressed how lucky and grateful we are to have these experts now and at the moments before Evan's birth but in that moment, I thought about other children who didn't have "our doctors" or a doctor familiar with ichthyosis, who may not have been as fortunate as us.

Every year, every day, every minute, every second of my life I will be forever grateful to the dermatologists that helped save Evan's life. Who are the same dermatologists that are continuing to help save others with education and research for better treatments and ultimately a cure.


Thanksgiving 2013

*** There has been LOTS going on this month and LOTS to write about!
(hence the lack of posts this month)

Yet another reason why I am so thankful for my wonderful life and the wonderful people in it!***


Friday, November 1, 2013

An Eventful Halloween

This year was Evan's very first Halloween as a "trick-or-treater". We only went to two houses; Evan's great grandmother's and his grandparents' (dad's side). I was so excited for him since this was the first year he kind of understood the concept. Well at least walking to a door, knocking and getting candy! And this was the first Halloween out of FOUR where he was actually able to be on his feet for a significant amount of time while given help to walk. I think I was more excited than anyone else!

Here is a little video of Evan trick-or-treating at his very first house!

Not only did we have a busy night stopping at a few houses but Evan's day was jam packed with Halloween festivities. I sent Evan off to school as Superman with his Super Evan cape. We even handed out Tiny Superhero treats to his classmates!

I even got to stop by Evan's school to watch him participate in Halloween centers. It was so nice seeing how he interacts with the other kids. And it didn't seem to phase him that I was there. Actually he didn't pay much attention to me at all! I hung out until after the kids got their treats. I even watched Evan grab his own juice box and take a big sip. He wasn't expecting juice and didn't try again but it was nice to see him mimic what everyone else was doing. He even pretended to eat his pumpkin treat!

Stamps are fun!

What a faker!

Once he got home from school we had Music Therapy. Evan was able to "shake some sillies out" and was dancing and being goofy the whole session! As if that wasn't enough for this non napper we even carved our pumpkin since Evan fell asleep so early the night before. He was not a fan of the goop. He wouldn't even touch it but gladly rolled his truck over it!

Before this Superman changed for trick-or-treating I had to snap a picture of him and his silly daddy who came home as a Coors Light!! And they are both rocking a pretty sweet peace sign!

Hope you all had a great Halloween!!!!