Thursday, July 24, 2014


We have been pretty busy so far this summer. Though we have a love/hate relationship with the weather and high temps, we try not to let it hold us back from doing activities outdoors. Obviously on the brutally hot and humid days, I try to find new activities to do indoors. We have been managing well so far and the weather hasn't been too much of an issue... YET.

FIRST National Family Conference
Evan started his summer break with a trip to Indianapolis to the FIRST National Family Conference. It is held every 2 years and this was our first time attending. My sister in-law joined us since my husband was unable to attend. We had a marvelous time and met some wonderful families. Some families I "knew" from the internet but finally had the chance to meet for the first time, some brand new faces and some friends we have known for a few years which we connected with once again.

Spending time with our buddies

Evan spent the days in a kids camp with other affected and non affected children his age. He loved it! Every time I dropped him off he was instantly busy in some sort of activity they had set for the children. And I heard through the grapevine that he was basically one of the only kids that didn't cry. No shocker there! While Evan was at camp my sister in-law and I attended different sessions that ranged from genetics, to current research, to skin and social tips. All were beneficial and I look forward to attending again in 2 years.

Evan with his friends Hunter and Lauren
(Hunter was recently on the Katie Couric Show raising awareness. Check it out HERE)

Evan and his buddy Brenna

The last night they held a dinner dance party which the children just loved. Evan was anxious to be on the dance floor with the other children and thank the lord for my sister in-law who walked around with him and helped him dance! My pregnant belly makes it hard for me to do! We were able to snap lots of pictures of Evan and his buddies. And we also had the wonderful oppotunity to meet Rick Guidotti, a former fashion photographer who now advocates while photographing those with genetic differences (learn more about Positive Exposure HERE). He was kind enough to photograph Evan as well as photographing Evan with all of the children and adults affected with Harlequin Ichthyosis.

Groovin' on the dance floor with Auntie

Hugging his pal Calvin goodbye

Evan's first trip to the Zoo
We like to plan things out for perfect weather days, so when we saw the temps and humididty would be low we headed for the zoo. We went to the Beardsley Zoo, about an hour from home, which is not terribly huge but just the perfect size to get the zoo experience and see some monkeys. Evan was delighted to see a range of animals and seemed most excited about the leopard who was pacing around in her den. It was a nice family outing and I look forward for new ones in the future.

Checking out the animals with Daddy

A visit from Mickey Mouse
Evan just loves anything Mickey. He is obsessed with the show, can't get enough snuggles with his stuffed animals and never gets sick of reading the Mickey Mouse books over and over. My father in-law has a friend who is a big collector of Mickey items. He also happens to have a real Mickey costume which he has been wanting to show Evan. Luckily we were able to plan a day for "Mickey" to come visit and Evan was just ecstatic! He could not get enough of the "big Mickey" that was standing in his living room. It was a precious memory I will never forget!

Fishing with Daddy
Joe is big into fishing so it is no surprise he wants Evan to learn how to fish too. We live in a lake community so we have access to fishing any time of the year (yes even in the winter!). We brought Evan down to the lake one evening to try and catch the "big one". Our first attempt was not successful but at first you don't succeed.... Another evening we headed down again, this time a bit more prepared. Joe would help Evan cast the line and Evan would reel it in on his own. We started getting a bite and the fish was able to steal the bait a few times. Of course on our last cast with our last bait Evan hoooked one! I think Joe was more excited than anyone! It was another memorable moment of a dad and his boy fishing.. a baby small mouth bass too!

His first "lunker"

Summer School
As much as summer time usually does not involve school, Evan receives services during a summer program. He couldn't be happier! He goes 3 days a week for 3 hours and is such a happy camper to see the bus back in the driveway. He waves and says, "Hi school bus, my school bus!" every morning with a happy squeal in is voice. He waves goodbye to me with a big smile on his face ready for the day.

Parachute fun at school

Excited for the baby
We are coming down the home stretch and Evan's little brother should be arriving in a month or so. We constantly talk about the baby with Evan which he gets very excited about. Every time we come upstairs he insists on going to see the "baby's bed". We go into the nursery and Evan explores the room opening every dresser drawer. He seems delighted about the idea of a new baby so I am anxoious to see how he will react when the baby comes and is part of the family. Evan is such a happy well behaved boy that I have a feeling he will adjust well.

Already lovin' on his brother