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??

 

Lovin' this Fall Weather

Evan LOVES to be outside so this time of year is perfect for him. We have been out and about on walks, hikes and car ride adventures. My sister and brother in-law bought Evan a cute little ride for his birthday. This thing has been a huge hit since June and when we want to take an adventure outside we usually bring the car along.

I do not offer to let Evan "walk" until the hike is coming to a close. Once this kid gets on his feet there is no turning back no matter how tired or lack of effort he puts in. He will absolutely refuse to be held and throws a fit if you try because he wants to be on his feet. It's a strain on your back as Evan needs a some support in his trunk and for balance. He has yet to stand on his two feet completely on his own. Hikes are a lot easier when there are two adults around so we can switch off to help Evan walk.

Here are a few shots of us  out and about in beautiful Northwest Connecticut. 

How could I not include this one! The whole crew posing for a shot!

 

Helping Others in Need

Ichthyosis is tough. Though I will never know how "tough" it actually is, I just have to witness it. I can't imagine what it would be like to live with but if I could trade places with Evan, I would in a second. Yet with all things considering we have been incredibly fortunate. Evan was born in one of the best hospitals in the country with Ichthyosis experts there waiting for his arrival. We have an incredibly supportive family that would do anything to help us. Our friends have been at our side and our community has welcomed us with open arms including us in a number of charitable events. My husband works hard to provide for us and is able to give me the opportunity to stay home and care for Evan. We have a good life. It makes having or caring for Ichthyosis a bit less stressful.

Some others are not as fortunate and hold a lot more burden than we do. Some are born in different countries with medical professionals who are uneducated about the condition unable to provide up to date treatments. Some individuals are rejected from society and thought of as a person who could be harmful to others. It is unfortunate these circumstances exist but it is reality. At least there is something we can do about it.

For one, educating others about Ichthyosis is incredibly important. A major reason why I support FIRST is because they can provide others with the accurate information about Ichthyosis and its current research and treatments, thanks to medical experts. Allowing medical experts to share this information with others in the field will lead to more accurate diagnoses and treatments for survival. Educating the public is just as important. It allows an opportunity of acceptance without judging. As Ichthyosis is a very physical condition many are scrutinized by their appearance. That is why raising awareness is so important.

Carly, a good friend of mine, is the author of Tune into Radio Carly. She writes about her life personally and professionally while living with the Netherton's Syndrome form of Ichthyosis. She is a motivational speaker and appearance activist. She seems to always be taking time to help others (including a month long series of shared stories during Ichthyosis Awareness Month).

One story in particular stood out. A woman with Ichthyosis who lives in India. Tina's story is very moving and really reminds me of how fortunate my family is. Here are some of Tina's words from Carly's Blog :

"At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive." 

She's been through a lot and continues to do so on a daily basis. Please take some time to read her story HERE. Fortunately, Carly has decided to make a move to help a friend in need. She set up a My Cause Page  to help gather donations to buy medical equipment and necessities to help Tina at a time in need. Please consider making a donation or passing along this story to help a woman who deserves it. We have been so fortunate to receive so much help from others including strangers that I'd like to return the favor. My donation has been made.  Kind deeds do not go unseen!