Extended family

Over the last 10 months my extended family has grown to be sooo big.  You see, anyone and everyone affected by ichthyosis in one way or another, I immediately consider as family.  I started building this family the moment Wyatt was diagnosed with EHK.  I haven't had the privilege of meeting most of my new extended family, but I have had the opportunity to meet a few.  Today was one of those special days.

This morning we packed up Wyatt and met up with two other families for breakfast.  Hugo & Claudia with their boys Gabriel & Ethan, and Isaac & Alicia with their son Efrain.

{Jared & I met Hugo & Claudia last June at FIRST's regional conference, but this was our first time meeting Isaac & Alicia.}

For me, today was like a mini family reunion.  As soon as I saw everyone, it felt like I was seeing family I hadn't seen in a long time.  It was so fun to see how big Gabriel and Ethan are now, compared to last year, and it was awesome to finally meet Isaac, Alicia & Efrain in person. 

Ethan has Lamellar Ichthyosis

Efrain has Harlequin Ichthyosis 

{which is the rarest form of ichthyosis. In fact, it's so rare, it's exact incidence is unknown}

 Aren't they so cute?!  I LOVED seeing the three of them together!

The restaurant didn't have a table big enough for all of us, so us girls sat together and the boys sat together.

It was soooo nice to be able to talk with two other moms that just get it.  We talked about our birth experience with our babies, {all very different, but all very traumatic}, the different lotions we use and the skin care routine, how we deal with the stares of unknowing strangers...  I loved being able to just talk with them and to hear how it is for them too.  I'm so grateful that we all got to get together this morning.  And luckily Wyatt was a good boy the whole time (:  Actually, all 4 boys were!

I'm looking forward to more get togethers in the future and am even more anxious for it to be next year already so we can see more of our 'family' at the regional conference!

p.s. if you haven't already, please consider donating to our fundraiser.  Just click the donate button at towards the top right of this page and you can donate through paypal.  Thank you!  Only 64 days left until race day!