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!!

 

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!

 

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!!! 

 

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!


 

Grateful

I have so much to be thankful for. As I am always thankful for my family and friends, I can never express my gratitude enough for the love & support they have given to me, to Joe and especially to Evan.

I am so blessed to have this little man in my life. He makes me smile constantly. He completes my life and maybe more so because it comes along with some unique circumstances. My world revolves around this child and even when I'm not 'thinking about him', I really am "thinking about him'.

It wasn't until recently when I was asked the question, in a FIRST interview, "What would you like to say to your doctors?" Before three words could even make it out of my mouth, I was in tears. They were happy tears, incredibly grateful tears. I had not expressed that emotion before. I had never been specifically asked that question before either. I have expressed how lucky and grateful we are to have these experts now and at the moments before Evan's birth but in that moment, I thought about other children who didn't have "our doctors" or a doctor familiar with ichthyosis, who may not have been as fortunate as us.

Every year, every day, every minute, every second of my life I will be forever grateful to the dermatologists that helped save Evan's life. Who are the same dermatologists that are continuing to help save others with education and research for better treatments and ultimately a cure.

Grateful...

Thanksgiving 2013

*** There has been LOTS going on this month and LOTS to write about!
(hence the lack of posts this month)

Yet another reason why I am so thankful for my wonderful life and the wonderful people in it!***

 

An Eventful Halloween

This year was Evan's very first Halloween as a "trick-or-treater". We only went to two houses; Evan's great grandmother's and his grandparents' (dad's side). I was so excited for him since this was the first year he kind of understood the concept. Well at least walking to a door, knocking and getting candy! And this was the first Halloween out of FOUR where he was actually able to be on his feet for a significant amount of time while given help to walk. I think I was more excited than anyone else!

Here is a little video of Evan trick-or-treating at his very first house!

Not only did we have a busy night stopping at a few houses but Evan's day was jam packed with Halloween festivities. I sent Evan off to school as Superman with his Super Evan cape. We even handed out Tiny Superhero treats to his classmates!

I even got to stop by Evan's school to watch him participate in Halloween centers. It was so nice seeing how he interacts with the other kids. And it didn't seem to phase him that I was there. Actually he didn't pay much attention to me at all! I hung out until after the kids got their treats. I even watched Evan grab his own juice box and take a big sip. He wasn't expecting juice and didn't try again but it was nice to see him mimic what everyone else was doing. He even pretended to eat his pumpkin treat!

Stamps are fun!

What a faker!

Once he got home from school we had Music Therapy. Evan was able to "shake some sillies out" and was dancing and being goofy the whole session! As if that wasn't enough for this non napper we even carved our pumpkin since Evan fell asleep so early the night before. He was not a fan of the goop. He wouldn't even touch it but gladly rolled his truck over it!

Before this Superman changed for trick-or-treating I had to snap a picture of him and his silly daddy who came home as a Coors Light!! And they are both rocking a pretty sweet peace sign!

Hope you all had a great Halloween!!!!

 

Our MicroSilk Tub

I find it ironic that over 3 years I will still put Evan in his blue baby tub, especially since we have an amazing, "skin healing" tub in our bathroom. I think that I have been set in my ways & routines but since Evan wasn't able to sit up independently until recently, the baby tub has been "easy". I would much prefer Evan to have a bath in our MicroSilk tub. I have to say that it is more work to clean out and prepare since it is a full size tub rather than a 3 gallon infant tub but the benefits from it are undeniable.

When Evan was born we were renting a home. It worked out in our favor because when we were ready to buy, we bought a house with Evan in mind. From purchasing a leather couch to make Aquaphor smears easier to clean, to putting in hardwood floors to avoid carpeting that Aquaphor would just destroy, we also kept the bathroom necessities at the top of our list. We knew a bathroom overhaul was the only possibility in the house we purchased. Though I was thinking more "new, fresh & clean" was what Evan needed, my mother in-law was thinking "we need to find a tub that Evan will benefit from". She did some research and found the MicroSilk tub.

While working closely with a woman named Cindy, at a local bath retailer, she provided me with a lot of information about the tub. Cindy was able to connect us with some representatives from the company who gave us the opportunity to set up a "tub test" for Evan. We wanted to make sure it was safe for him to use and had a positive effect on his skin. So one day, two representatives came to our home with a utility sink sized MicroSilk tub. Evan was only 7-8 months old at the time but once we placed him in the tub you could see it working it's magic. His thinner scales were easily coming off with minimal rubbing.

A MicroSilk tub is similar to a jet tub but does not force strong air through the jets. The special design emits millions and millions of oxygen rich bubbles which are so tiny they can get into your pores for deep cleaning. For Evan, these little bubbles get underneath his scales and gently exfoliate without the harsh rubbing. We still put in some effort to exfoliate, usually with our hands rather than a wash cloth. We do not nearly put in the effort we would with a traditional bath. Not only does this type of tub help with exfoliation, we have not felt the need to use baking soda in these baths. We will usually put in a splash of bleach for a piece of mind. Even though something looks clean and I just cleaned it doesnt mean it is clean. You can never be too safe with cleanliness and HI.

I can only wonder if these little bubbles are able to make it into his tight pores and give his skin oxygen.  We notice after a MicroSilk, prior to an immediate Aquaphor application, that his skin is very soft. With Ichthyosis his pores are extremely tight, preventing sweat from even breaking through. Removing the scales and allowing oxygen to aid his skin could only be a benefit. You can tell when Evan has had a MicroSilk bath because his skin looks fantastic, not scaly for the majority of the day (again with continuous Aquaphor applications). And at night it is honestly hard to give him a "good" 2nd bath since the morning MicroSilk had such amazing results. Though no matter what, with Ichthyosis, It NEVER hurts to soak!

The water of every bath Evan takes looks as if you shook a snow globe. But the amount of skin left over in the MircoSilk tub is almost unbelievable. It is obvious this type of tub is beneficial for scale removal. We have to use a (clean) fish net to scoop out the skin.  I'm honestly worried about what skin and Aquaphor residue are doing to our plumbing.

I hope you are not eating! And this is a 5"x 3" fish net. 

I'd say the size, width, depth, weight comparison would be a candy bar.. Baby Ruth!

The craziest part is that this is not nearly all of the skin in the tub. And it's not the most I have ever scooped out either. Keep in mind that Evan is only 21 pounds & the size/length of a skinny 18 month old. I can't imagine how much more skin will be left over when he's 10!

I just wish someone with Ichthyosis who is older (or can at least talk) would take a couple long MicroSilks and give me their input! Any takers??