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!!


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!