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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Wednesday, March 12, 2014

Evan's 2nd Annual FIRST Fundraiser

So exciting to announce that I am hosting another T-Shirt sale in honor of Evan and to support FIRST for Ichthyosis Awareness Month (IAM). Sales and orders begin NOW and all proceeds will benefit FIRST. My idea this year is to sell and send out shirts before IAM so everyone can sport their shirt to help raise awareness! I am very excited about this design this year as well! Even though I had this idea last year while making the first round of shirts. Just LOVE the quote!

I designed the shirt and our family member, Ann, did the art work. I think it's just adorable and it definitely brings a smile to my face. The quote is from a song, from another favorite band of mine. Even though the quote may signify something different in the song, it makes a lot of sense in regards to Evan and anyone affected by Ichthyosis!


FRONT OF SHIRT


Same logo expect for updated year and FIRST's website!!



BACK OF SHIRT


IN LOVE with this!!! :-)



SHIRT TEMPLATES



T-SHIRT SALE DETAILS:
This year I am doing pre-order sales to ensure everyone gets the size and color they want. The colors available this year are Natural, Light Blue and Pistachio (though shirts are a bit lighter than this template shows) All colors are great and appropriate for male or female! Sizes available are adult Small, Medium, Large, XLarge and 2XLarge. (children sizes may be available for youth small to youth large depending on order requests, though unfortunately they cost the same as adult sizes) All shirts will cost $20 (plus $3 shipping for 1-shirt, $5 shipping for 2+) with 100% of proceeds to benefit FIRST.

Here is how to order:
1. EMAIL ME at dede583@hotmail.com with the subject field "T-Shirt 2014".
2. Tell me your desired size(s) and color for each shirt.
3. Provide your mailing address for shirts to be sent.
4. I will respond with a link for payment and your total donation price.

PLEASE ORDER BY MARCH 31ST. Please allow time for shirts to be ordered and printed as well as mailing time. Ideal delivery date is set for the beginning of April so everyone has their shirt by IAM.



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Friday, February 28, 2014

Rare Disease Day 2014


Today is Rare Disease Day. A day celebrated every year, on the last day of February, to honor, recognize and raise awareness for all of those living with or caring for someone with a rare disease. As you know Evan is affected by Harlequin Ichthyosis. Which is only one of thousands and thousands of rare diseases. We are not the only ones in this world facing challenges and some do not even have treatments for their condition.

So we are lucky. Very lucky. We are lucky that we have information and medical advances availble to live our lives to make it through the day, months and years. We are lucky that even though Ichthyosis is rare and has no cure, we have a community to help support us and connect us with others who share their care routines, their product suggestions and tips & stories on how to face society. We are lucky to have researchers who are dedicated and passionate about their work- looking for new and better treatments and ultimately a cure.

Mommy and Evan wearing "Jeans for Genes" in support for Rare Disease Day
(Would you believe it if I told you this is the first an only picture I took!)

That is why today is an important day. A day to raise awareness for all rare diseases. To advocate for these conditions so others become aware and can spread the word, to help. It is a day for those affected to celebrate life and show others that even though living with a rare disease may be hard, life can still be wonderful, eventful and happy.

Because that is how we like to live our lives. Happy. Of course there may be a bad day here or there but we never let our challenges control our life. Life is precious and life should be lived positively and optimistically. We never had depressing, weak or low stretches in our life with Evan (even when he was born) because we chose to keep our heads high and never give up hope. We appreciate the life we have been given and always have.

This is the official video for Rare Disease Day. Learn more and read more stories about others living with a rare disease at www.rarediseaseday.org




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Monday, January 27, 2014

Supporting FIRST

Tiny Superheroes already does so much good for so many special children. In celebration of their one year anniversary and their first Tiny Superhero (Brenna who has Harlequin like Evan) they made T-shirts to help raise awareness and funds for the FIRST Foundation.

This was a month long event which started in the beginning of January. So if you are interested you can purchase a T-Shirt through the end of the month and $5 of each purchase goes directly to FIRST. Robyn the creator of TS is such a gracious soul and I am so honored that she is not only in support of thousands of children in need but is also in support of a foundation that is so important to our Ichthyosis community.

The FIRST foundation is our #1 source of up-to-date information, education and research for Ichthyosis. They have a huge support system for those affected including parent groups, adult groups and young adult groups where individuals can chat via internet about tips, products, skin regimens and emotional support (especially for new parents with an affected child). Their site includes a plethora of information and it is my goal to help spread the word for this foundation so their information can be available to everyone who needs its.

Thus the goal of this blog. Yes its a hobby to pass the time and a way for me to share stories about Evan, especially to family and friends around the country and abroad. But this blog really isn't for me. And it isn't really for Evan. It's for everyone else in need of information about Ichthyosis and where to find the accurate, non bias, non opinionated essentials through FIRST, with NO STRINGS ATTACHED!!

The only thing I get out of this blog is helping others and fundraising for research. I honestly do not need anything else in my life. All I want is for FIRST to be recognized so we can help support research and ultimately find a cure. And like I have said many times before, a cure to take away the medical challenges: the struggles gaining weight, the never ending fight to stay infection free, the stress of regulating body temperature, the constant worry of keeping eyes lubricated to avoid complications and the discomfort from thick scaling and never ending skin care is what I would like to be cured. Heck check one off the list and I'd be happy.

So thank you. Thank you for reading, sharing, supporting FIRST and helping to raise awareness for Ichthyosis. Sharing this information and supporting FIRST is what is really important and is all I would ever want to achieve from writing this blog.

Here are some photos of Evan recognizing his heroes in our community.

Daddy is by far his #1 hero!

What's a superhero without his superhero sidekick Bruli!

Evan's school nurse is amazing! Not sure what we would do without her!

Evan's teacher has been so supportive and is paving the way to his education!

This lucky little guy has 2 aides trained for his care! 
They are amazing with him and you can tell he's crazy about them too!!



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Monday, January 13, 2014

Evan These Days

I certainly have slacked on the posts since Evan started school this fall. How ironic since I technically have "more time".  It has been a busy fall for Evan and for myself. We had something planned every weekend from Halloween through the holidays. One event which was a fabulous night was FIRST's Night Out at the Celtics game. We met lots of FIRST members and even got to go onto the court with the players during the national anthem!! Evan absolutely LOVED it and was smiling and clapped and cheered the whole time!

Watching the warm-ups right before heading out on court!


He clapped the whole night! Didn't matter who was cheering for who!


So what is Evan up to these days?? A lot. Last year before Christmas I wrote a post about my Christmas wish for Evan. To be sitting for that Christmas. But Evan literally started sitting for seconds on his own at that time and I not realizing how far away he was from independently sitting. Luckily this Christmas he WAS sitting independently. Although it took almost a year for him to sit, it is a relief that he has achieved at least ONE major gross motor skill. So I definitely took advantage of his sitting skills with lots of photo-ops!









Evan is flourishing in school and greatly enjoying being there. It's nice to have a happy kid who willingly and excitedly gets on the bus each morning. It is quite rare for him to be in a "bad" mood while going to school. He loves being around the other children and has made quite a few friends. We have been so fortunate to be in such an amazing district with so many wonderful teachers, aides and school community. Parents have been very welcoming and kind and we even have a few play dates to arrange with some classmates. 

There is no doubt that Evan is benefiting from school. His speech is coming along nicely and I can communicate with him very well. He completely understands everything we say and tries really hard to get out what he needs to communicate too. He is starting to be quite the echo so now I really need choose my words carefully! Evan is Mickey Mouse-aholic. Everything and anything Mickey brings a huge smile to his face and he will repetitively say "Me Moe" (Mickey Mouse) if he sees him or wants to watch him on the TV.

He is a pro at the iPad too. He knows exactly what apps are what and which one he wants to play. He has discovered Netflix on the iPad and will try to be sneaky to get an episode of Mickey Mouse or Caillou in. I usually have to tell him, "Game first then Mickey." Evan loves to be on his feet and loves to walk. With assistance we walk around the house, practice walking in his walker and work on strengthening those legs and core muscles. He gets lots of therapy at school which are also helping him strengthen these essential abilities. 

Ill be sure to add some recent videos (in my next post) of Evan in action to show off what he is doing these days! He may not be super mobile but is certainly is one smart cookie!


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Wednesday, December 25, 2013

Merry Christmas!

Merry Christmas and Happy Holidays!!!

We have been busy, busy, busy!! I know, I know I sound like a broken record. But there is LOTS to catch up on! Hopefully I'll get back into weekly blogging soon! Until then enjoy some Evan cuteness to spruce up your holiday spirit!

The Christmas Tree hunt..


My loves!


Found it!


Cuteness!


Snowy Day!


Love this kid!


Would you like to do something for Evan for Christmas? 

Please LIKE and SHARE The FIRST Foundations Facebook Page

Or go to their SITE and learn more about Ichthyosis and the efforts being made to help others!! 

MERRY CHRISTMAS!!! 




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Tuesday, December 3, 2013

One Lucky Little Guy

We are privledged to have an enormous amount of support for Evan thanks to friends, family members and even strangers. A few weekends ago, a fundraiser was held in honor of my "Lil Warrior". My sister in-law's roommate from college, Michelle, and her family wanted to put together an event to support Evan. Michelle's mother Diane and her fiance Wally are members of the Widows Sons, a motorcycle association, whose chapter is based out of Massachusetts.

They hosted this event at a local restaurant. Members and friends of the Widows Sons attended while participating in a raffle and singing some great karaoke tunes. Not only was everyone there incredibly warm and friendly, they were beyond generous. When we arrived, we walked in to see a table dedicated to Evan including his favorite snacks, balloons, books, crayons and Aquaphor. Evan enjoyed the evening walking around and playing with the other children who were there.


As the night came to a close, the Widows Sons had a special surprise in store for Evan. He was made an honorary member and given his own custom "Widdows Kiddos" vest. Embroidered on the front and back include his nickname "Lil Warrior". I was so touched and overwhelmed by the generosity of these kind people. People I had only met for the first time in my life were taking the time to support my boy.




It is hard to find words to express our gratitude. And the weight that is lifted off of our shoulders, to worry less about medical bills, is an amazing feeling. Thank you to everyone who came, helped, donated and participated in this event. We are so incredibly grateful and are so lucky to have so many gracious souls in our lives. Evan is one lucky little guy!


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