Thursday, July 24, 2014

Summertime

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

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Thursday, June 12, 2014

Evan is FOUR YEARS OLD!!!

We celebrated Evan's 4th Birthday on Monday and had a birthday party for him last weekend. It is quite amazing how time flies and how my little man not only turned 4 but is finishing his first year at preschool. Wow, has he come a long way! The important things in life such as happiness really make our lives complete. This child is literally the happiest kid I know and it melts my heart to know that he is clearly enjoying his life.

Things were so uncertain the day he was born. Though I was certain he'd survive, I wasn't sure of how life was going to be for him. Now it's obvious that things are going well. He is improving (developmentally) everyday with speech, gross motor and fine motor abilities, his skin care is consistent and our normal which has kept him infection free (knocking on wood) and he is so happy, silly and playful like any other toddler I know. His pleasant and joyful disposition makes me think his little brother-in-brewing is going to give me a run for my money!

Happy Birthday to my special warrior. You have proven yourself to be a fighter and I know you will go far in life. Keep smiling sweet boy!



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Mickey Mouse Birthday Party!




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Tuesday, May 27, 2014

A Visit from Carly

During Evan's first Spring Break, we had a very special guest stay with us. Carly, author of Tune Into Radio Carly, came to stay with us for a few days. Carly is from Australia and was traveling through the States and stopped for a visit in our neck of the woods. I met Carly online, through Ichthyosis support groups. Carly is affected with the Netherton form of Ichthyosis. We started our friendship through social media; comments on posts or pictures which led to conversations through messaging. In 2012, Carly was planning a trip to the States and was making a stop in NYC. I asked her if we would be able to meet for dinner and she kindly made time to meet me. I was lucky enough to even meet her mother as well! We had a lovely time and our friendship blossomed from there.

When Carly mentioned that she was planning another trip to the States this year, I jumped at the opportunity to offer my home to her. Fortunately she was able to fit a visit in to come see us. We had a lovely time. It was the first time she was able to meet Evan (as I did not bring him into the city to meet her a few years ago). Evan was just delighted and took to Carly instantly. Every morning when he woke up he would say "Where's Carly?" and point to the gifts she brought him from Australia.


We enjoyed our days chatting and laughing. We were able to meet up with a few ladies from the FIRST Foundation for lunch which was so great. I'm glad we were able to arrange a time to see them as I know they were anxious to meet Carly as well. Carly even tried out our MicroSilk tub while she was here. I was curious to get an adult's perspective on how effective it was on the skin and she seemed to like it. The days she was here were so enjoyable and I had such a lovely time hosting her. She pretty much got the whole New England weather experience too. One day was warm and sunny, the next cold and rainy and it even snowed a few inches on the last night she was here!  I cannot wait for another visit with her. Though it's my turn to head to the land down under!



Be sure to keep up with Carly's blog this month as she also celebrates Ichthyosis Awareness Month. Each day she is featuring a story written by someone who is affected or a parent of a child affected by Ichthyosis. Such a great way to raise awareness and learn more about this life long condition.

Carly featured our story last week you can read it HERE!!

Monday, May 12, 2014

A Day in Evan's Life 2014

Yay! It's May! Not only is May my favorite month of the year but a month we celebrate while raising awareness for Ichthyosis. A lot has been going on here, hence the reason for my lack of posts. Evan is a busy boy. He is at school for a couple of hours in the morning and after that it's Evan and Mommy time. He has me wrapped around his little finger but I don't mind. It's actually kind of cute how much he loves me! Even if he is relaxing on the the couch watching Mickey Mouse, he wants me sitting right next to him. His newest thing is "Look mama" at every little thing. Whether it's a picture in a book, something on the TV, a duplo tower he made or noticing Bruli out the window; he is in constant need of my attention and recognition. Something that will change quite a bit once his baby brother comes!

Evan will be FOUR YEARS OLD in one month. Hard to believe really. And although he is not motor like most 4 yr olds he is making his way and is still as happy as ever. I am really enjoying his speech development. We are on the verge of having actual conversations. He will say things spontaneously whether it is a comment or statement. He is quite the echo too and repeats things I say or thing he hears on the TV or iPad. Having this connection with him by communication is so rewarding to me that it makes me forget about the fact he is yet to walk, but he WILL.

For the past 3 years on April 9th, I have recorded clips of what a typical day is like for Evan. This year was no different though I did not capture nearly as much footage as the years past (I figured everyone pretty much got the idea about skin care which hasn't nor will change, for life). But at least I remembered. And today you can see Evan's growth over the past few years. Evan has always been on his own growth and developmental pattern. He has always made itty bitty steps in regards to milestones. (Also keeping in mind that he was the most premature of any other Harlequin that I know of). Many parents get wrapped up about when their child will reach these traditional milestones. And some parents with a special needs child wonder why they haven't met them or wonder when or if they ever will. I am well over that stage and Ill take anything he'll give me! It's obvious that Evan is going to do what Evan is going to do. And I am very content with that now. What is MOST important to me is that my child is happy. And boy is he one happy camper! Enjoy this year's "A Day in the Life"!




2014's Video




2013's Video





2012's Video



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Thursday, May 8, 2014

Thank You! Thank You!

I am so excited to be able to send in our donations to FIRST! Thanks to all of you, we are sending 
 $1,141
To FIRST in honor of Ichthyosis Awareness Month!

It is quite an amazing feeling to have so many people in our lives who are so caring and gracious. I appreciate everyone supporting my boy and a foundation that will help better his further and the future of many others' lives. It's good to know that there are people who are willing to help a foundation in need. There are so many good souls out there! :-)

Now don't forget to rock out your shirt during the month of May! Take pictures and send them to me at dede583@hotmail.com or post them using the hashtag #EvansFundraiser on Facebook or Instagram. I'd love to see everyone sporting their Evan FIRST shirts! Thank you for helping to raise awareness for Ichthyosis!!


Evan's Ichthyosis Awareness Month "selfie"


Some friends at Evan's school helping to raise awareness!!!!
#EvansFundraiser







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Thursday, May 1, 2014

It's May! Happy Ichthyosis Awareness Month (IAM)


My motivation and inspiration to help raise awareness for Ichthyosis is all because of my precious son Evan. He puts a smile on my face no matter the time of day or mood I'm in. He is an amazingly happy child for all he goes through and I am so grateful to have him in my life. I love you Evan! You are the sweetest child a mother could ever ask for! This is all for you!


It's May!! Yay!! Ichthyosis Awareness Month (IAM)! Though I try to raise awareness all year long, this month is dedicated to those living with Ichthyosis to help raise awareness and educate others. I have been very involved with helping the FIRST Foundation by using this blog to raise awareness for not only Ichthyosis but for their foundation which is dedicated to helping those affected by Ichthyosis through education, research and connecting families.

I have been spending the past few months working on a T-Shirt sale which benefits FIRST in honor of IAM. It has been very successful and I hope to send in all of the donations asap! Let's just say I am very fortunate to have so many people in my life who are also dedicated in helping FIRST in honor of my special little man! And I pretty much sold every T-shirt I ordered which is just fabulous! Check out pictures to be posted on Instagram of supporters in their shirts using the hashtag #EvansFundraiser.


I also plan on collecting change at home during the month of May. I have done this the previous two years during IAM and this year is no different. If you are interested in collecting change to donate to FIRST please do!! I know I have already had so much support with the T-Shirt sale but a little change goes a LONG way. Every penny counts! Last year I sent in a few hundred dollars just from change collected from a handful of friends!!! You can send me a check (made out to "FIRST Foundation") after you cash in your change at the end of May and I will send in all of the donations together. Even if it's $2, it's better than nothing!!! Here is more information about my past coin collections "It Make Cents to Help FIRST". And here are a few posts about why I blog and why it is beneficial to help FIRST.

And how can you kick off IAM without sharing the facts!!! For those of you who haven't read these please do. And for those of you who have, why not refresh your memory!! 

Here are some facts about Ichthyosis:


There is no cure for Ichthyosis.

Ichthyosis affects people of all ages, races and gender.

Ichthyosis is not contagious. It is caused by a genetic mutation in 1 of 40 genes that make up the skin.

- Ichthy comes from the Greek root meaning fish.

Some form of Ichthyosis affects more than 16,000 babies each year.

There are more than 28 forms/types of Ichthyosis.

Hearing and vision impairments are associated with those affected by Ichthyosis.

Ichthyosis Vulgaris is the mildest and most common form, accounting for about 95% of the cases.

Serious medical complications are associated with most forms of Ichthyosis including dehydration, infections, blistering, overheating, and rapid calorie loss.

The FIRST Foundation is the only patient advocacy organization in the country funding research for a cure.



Facts about Harlequin Ichthyosis:

Harlequin Ichthyosis (HI) is very rare and the most severe form of Ichthyosis.

HI affects maybe 1 in 1,000,000 people.

Each parent has to be a carrier of the mutated gene but show no signs of Ichthyosis.

An HI infant is born with plates of skin that crack and split apart leaving the body susceptible to life threatening infections.

At birth, the eyes and mouth are forced 'inside out' due to the tight plates of skin.

The ears of an HI infant may appear to be misshapen or missing, but are fused to the head by thick skin.

In the past, this disorder was always fatal but due to improvements in care it is now possible for an HI infant to survive.

-Stephanie Turner is the first woman affected by Harlequin Ichthyosis to give birth. Her son turns one this month!!!

The oldest person living with Harlequin Ichthyosis is 30 years old.



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Friday, April 4, 2014

LOTS Going on!!!

-We are getting closer to May which means it's Ichthyosis Awareness Month (IAM) countdown! This year to support FIRST for IAM, I'm doing another T-Shirt Sale to benefit this foundation. I have already taken orders and sent shirts to print. If you didn't order, I ordered a few extras which can be purchased but I cannot guarantee size and color. Send me an email, dede583@hotmail.com, if you are still interested in purchasing a shirt to support FIRST!!

-Also, as May approaches so does the Red Sox game at Fenway! On May 29th, we will be celebrating IAM during a baseball game at my favorite team's home base! The goal is to raise awareness for Ichthyosis and FIRST, so hopefully you will be able to join us! Tickets are still available but won't be for long so find out more details here: FIRST Night Out at Fenway

-In other news we have a special friend coming for a visit in about a week or so. Carly, whom I have spoke of before, is traveling the states and is making a stop in CT just to see us! I am sooooooo excited to see her! And I am so excited for her to finally meet Evan. We plan on meeting up with a few friends from the FIRST Foundation as well. Though it's chilly here in April, hopefully we will luck out with some nice weather and I can show her the beauty of Northwest CT!

-In bigger news, Evan is going to be a big brother!!!!!! We are very excited to be able to give Evan a sibling and he is just thrilled about the thought of a new baby coming. Im already getting close to the half way mark and everything is looking good and healthy! So I will be a busy mommy come September with an immobile 4 year old and a newborn. But I honestly cannot wait. Luckily I have lots of family that is willing to help out.

-Evan is just loving school these days. He is such a silly little guy when he sees the bus pulling in the driveway. His face lights up and his smile can't get any bigger. His speech is coming along nicely and it is getting easier and easier to communicate with him. He is smart as can be and knows his numbers and letters. He is getting stronger though still very behind in motor skills. He does well in crawling position though his arms are not strong enough to hold his weight and his balance is not 100%. He loves to walk with assistance though again he has no balance whatsoever. But I can definitely see the growth he has made this school year in all areas, even if it's itty bitty steps rather than leaps and bounds.


Enjoy a few new pictures and videos of my special little man!

He LOVES his Mickey guitar!


Standing like a big boy in his Tiny Superheroes shirt!



Practicing those ABC's




Rockin' out with Daddy!


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