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!


 

Picking Up and Moving On

What a perfect post to follow my previous, Staying Positive...

So a few days ago, Evan and I took a trip to Target. It was in the evening and the weather was changing into a warm spell. I have a handicap pass for him so it is easier to get into the store, especially on hot days. This day I did not use it as I tend to look for a close spot first and found one. I still don't feel completely comfortable parking in the handicap spot and really only use it on those dangerously hot days.

As I was getting Evan out of the car a mother and daughter walked by, leaving the store. I could see that the mother started to stare and continued to do so as she walked by us. I smiled as usual and as we walked away towards the store I heard her mutter, "Ever hear of sunblock?" Quite surprised I whipped my head and instinctually responded with a "Hah" and sarcastic smile. The kind of "hah" that I can hear my Grandfather say when someone said something "smart" (that would be you Rob!). But by the time I looked back I only had a microsecond to make eye contact with her before she walked behind a car. I would have liked to nicely put her in her place by educating her but I was not about to turn around and chase her down. I was just surprised that she reacted that way in front of her child. That kind of example only leads to one thing.

Luckily I was in a good mood. Even if I was in a bad mood I wouldn't let it bring me down. I might have said something snarky but wouldn't let it ruin my day. But I pick up and move on because like I said in my last post, "There is only so much you can do and so many people you can educate. From there you just need to live your life". There is no point in dwelling on it. There is no need to get upset over it. This is the kind of example I must set for Evan since ignorant people like that have no place in your life. They cannot control the way you feel. Unfortunately there will be bad days and that's just how it is. Everyone has a bad day here and there, yet another part of life. But life is short. Life is precious. So we will live our lives happy with the people we love and love to be around.

I feel like I am coming out of my shell too. I wouldn't hide Evan in public but I would try not to let people look at him, especially in the beginning. I would always look for the people who were looking. But as Evan has gotten older I have become more comfortable in public. Now I care less about the looks, stares or questions and just smile, educate and live my life. Evan is a social butterfly anyways, is constantly gabbing or being silly so most encounters are quite pleasant. We can't worry about what the world thinks.
It feels good to be happy.

 "Brush off the dust and pick up your head. Walk tall."

Happy boy- First day of school!

 

Staying Positive

My life is intense. It only became this way since Evan was born. In one of my very first posts, I wrote, "I have had a pretty easy going life.." and although I still consider true, it is also intense. But it's an intensity I won't really let set in. There is no time to let intensity take over and disrupt my purpose, my mission. I'm lucky I can push it aside to live. I appreciate that because with everything that has been thrown onto my plate, I still have it pretty good. I think about other parents who have a child with special needs which are much more severe, rare or life threatening and then think to myself "wow, we are so lucky." I have a great deal of empathy for these parents and can't imagine some of the things they may be going through.

When I think of Evan's life in the future I wonder, "Will he fit in?", "Will he have friends?" "Will he ever walk, sit or talk?" And then I stop myself because I know he will. I know he will be OK. I know we will teach him to be a strong independent person. His personality is happy and outgoing already so we will have no problems there. But will he walk when he is 4? or 5? or 6?  Who knows and I'm starting to care less because I know he will. Some parents don't even get to think of these types of things because other serious issues are going on that they have to worry about. That is why I appreciate everyday. As bad or as tough as it may seem, someone has it worse, unfortunately.  

I like to live and lead a positive lifestyle. Being sad, overwhelmed or frustrated has no benefits. Of course these moments occur but they are brief and I do not let them break me. How could I not appreciate this life. We live in a beautiful home in an amazing community.  We were blessed with an amazing family and group of friends. I am fortunate that I can stay home with my boy thanks to my hard working husband. We have a friendly rambunctious dog that is very gentle with Evan (and even the cat too). We are very lucky. We are lucky that Evan is with us and that our life is pretty much normal. At least I think so.

I know I am on a mission to raise awareness so that Evan's life will be easier when he gets older but there honestly is only so much you can do and so many people you can educate. From there you just need to live your life. As Evan gets older we will teach him how to politely respond to questions or looks, starting by displaying these actions before he can voice it himself. He will learn how to deal with these situations but at the same time I don't want him to ever think that he owes anyone an explanation. I want him to know that he is just like everybody else. I do not want him to go out in the world always on guard thinking he's "different". And as much as it is important to teach him this, it is also important to teach him to be positive and appreciate everyday. Appreciating the major things like family, friends or a safe and comfortable home is just as important as the little things like a walk on a fall afternoon, a warm cooked meal or snuggling with mom and dad on Saturday mornings. It all makes for a happy life. Happiness is key.

Carly , author of Tune into Radio Carly, wrote a great post sending a message that "It gets Better" When I asked her if she had any advice for Evan when he got older this is what she said. (I intended on posting this during Ichthyosis Awareness Month as a part of "tips" and time got the best of us!)

- Try not to compare yourself with others (or parents, don't compare your kids with other kids). Your progress is your own. You may look different but you're perfectly you. 

- Have a good relationship with your doctor. Hopefully you'll be seeing a dermatologist. If you're not, ask your general practitioner to refer you to one immediately. See them regularly. Listen to their advice, but also let them know you want a say in your treatment. You'll know what feels best for you. As you grow up, you'll get to know your skin pretty well.  

 - Try to stretch yourself as you mature. Get out there and have a go - play sports (though this is my least favorite thing!), join a group like cubs or girl guides, sing in a band. You'll make heaps of friends and learn new skills. The best thing I did was get a part time job in a department store age 17. Working in a public role helped me become more confident, and it also forced me to answer questions about my skin in a calmer and more professional way. I made life long friends at this job. I wished I'd started working earlier.

- Find a support group. Your local hospital may run one. You may find one online. You need not even talk about your Ichthyosis - you may want to just talk about your interests. Remember though, everyone's experiences are different and what works for your friend in the support group may not work for you - check with your doctor before trying something new. And don't let others' issues with their illness bring you down. Surround yourself with positive people. 

Seeing what a normal, happy life Carly leads makes worry less about Evan's future. She is happy and successful and though, of course, has had her "bad days" due to skin, it's a part of her life and she picks up and moves on. She sends a great message and I am glad to know there are so many positive people to influence Evan's life. Happy is a great way to live.

Happy boy waiting for the bus on the first day of school

 

Heading to School

Evan is off to preschool on Tuesday. It's a bittersweet moment and though I am very excited to have some me time, it's such a big change from what we have been doing the past 3 years. Preschool is only 3 hrs a day but our whole routine changes. A change I have needed for a long time. New routines are great, never mind the fact that it comes with some 'mommy time'. And Evan is absolutely ecstatic to go to school. He has a HUGE smile on his face when I say "the word".

Im not nervous to send him off. We had time at the end of the last school year to get Evan's school routines ironed out and skin care practice with the nurse and his aides. That "sending your child off for the first day of school moment" did not hit me then. Probably because I went to school with him the first week but also because I knew the year was ending and he'd be home for the summer. But it gave everyone time to get to know Evan, his skin, his needs and be comfortable with it.

Sending him off Tuesday will not be nerve wrecking for me as he is in GREAT hands at school. But I can feel that emotional side of me rising since I am sending off my baby for a WHOLE SCHOOL YEAR. It's hard to even believe he is already 3 years old never mind starting preschool. But to get to this comfort level that I am at, with sending him off, did come with a lot of planning and training. Since Evan was receiving therapy through the Birth to Three program he was referred to the public school system for services when he turned 3. We had quite a few meetings before our official PPT to prepare everyone with what to expect by having a student with the most severe case of Ichthyosis known, who was also very behind developmentally.

Here is a list of things I did in preparation to sending Evan to school, first and foremost was to educate everyone about Ichthyosis:


1. Provide as much information about Ichthyosis as possible: 

       -I made copies of the FIRST Foundation Harlequin Ichthyosis information page to be handed out to everyone (for our initial meeting).

       -I provided FIRST's Teacher & Staff Guide booklets to everyone who would be working with Evan. *Very important for substitutes* (you can have the FIRST Foundation send these to your school too)

       -I wrote a detailed list of "Medical Concerns" for Evan to be included in his file or available to anyone working with him. As Ichthyosis varies by type and may require different care for the same types, it is important to have a detailed list of medical care required to keep your child safe, healthy and comfortable.

       -I strongly suggested the FIRST Foundation website and contact information be used to gain more information about Ichthyosis as well as answering any questions or concerns they may have.

       -I offered to come in and "train" others on how to care for Evan, what signs to look for in regards to skin concerns, temperature or dehydration. I also provided a very detailed "care instruction" list on how to apply Aquaphor, how to care for a cut/fissure, overheating signs, cool down methods etc.

       -I offered to send a letter home with classmates explaining Evan's condition, so that everyone would be comfortable; parents, children and teachers. I also suggested this letter be available to all of the staff at the school, since this is where Evan will be until 6th grade. If the other teachers are prepared, they will be able to accurately respond if their students' have questions about Evan.

       -I provided my blog address so school personnel could gain more information about ichthyosis as well as getting to know Evan before he started school.


2. In the classroom:

       -I provided a container of items for the nurse and for the classroom so that Evan has everything he needs while in school. Items included: Aquaphor, bacitracin, baby wipes, diapers, hand sanitizer (for adults), clorox wipes (for cleaning), a change of clothing, spray bottle, lightweight blankets for carpet time and a thermometer for the classroom. (I even gave all his therapists, teacher and aides a "welcome gift" which included a bottle of Spray-n-Wash and personal hand sanitizer)

       -Evan's "emergency bag" is pretty much his diaper bag which has everything he could possible need. I check it each day and send it with him to school. It is always kept with him but also includes items necessary incase of an emergency. (i.e. a fire drill on a warm day would require a hat, sunglasses, spray bottle or ice pack)

       -I provided the classroom with a dust buster. Since skin is all over my house, I can imagine what it will do to a classroom over time. It's a nice and convenient item to help keep things clean around any kid, Ichthyosis or not.

       -I offered to come into school the first day to talk with the students about Evan. I figured the best way to make sure everyone was comfortable was to talk about it. Last year I went in and talked about Evan's skin with the class and answered questions. It was a great way to introduce Evan to the class as well as reminding them "it's ok to be different, everyone is different".

3. Be an advocate for your child:

        -Know your rights. There are certain laws set in place to protect your child's medical or education needs. Though federal laws, your school system should provide you with the proper information or where & how to obtain it. (504 PLAN)

       -Ichthyosis is rare. Most school systems have never heard of it before. Even if they read about it,  you know your child best. Be sure to be clear about their medical needs and PUT IT IN WRITING. You know what your child needs and what your child is or isn't capable of, in regards to skin.

       -Be clear on your views of bullying. Since Ichthyosis is a very physical thing, many have been scrutinized by their appearance. With everything these children go through they should not have to deal with these behaviors. Though all school systems have no tolerance for it, make it a point that you don't either.



More sites and links about sending you're child with Ichthyosis off to school:

FIRST Foundation:

How Do I Inform My Child's Teachers and Classmates About Ichthyosis? 

The College Survival Guide

Guide for Teacher's and School Personnel



Confetti Skin, Beauty Within:

Ichthyosis and 504 Planning

Life With Ichthyosis: Meet the Teacher

Back to School 2013

Evan testin' out his snazzy school jeans with his best bud by his side!

   

 

My First: FIRST Gathering

A few weekends ago, I was lucky enough to attend the Patient Support Forum hosted by the FIRST Foundation in Mahwah, NJ. Since Evan just had surgery he stayed home with his dad. I made the short trip solo and I am SO HAPPY that I did.

Not only did I get an excellent genetics lesson but I also got to meet some wonderful families. Some, I recognized from FIRST newsletters or on FIRST's member stories page and some new faces I had never seen before. It's was small and intimate and very rewarding. It was comforting to be with a community who "gets it" and has "been in your shoes". It was interesting to meet others with different types of Ichthyosis and to communicate with parents about how they care for their child. In the "parents group" we also talked about social interactions and school settings.

As much as I "knew" about Evan's genetics, learning more about genetics in general, types of mutations and why/how mutations cause problems within genes was a great reminder of those forgotten science lessons in high school. It was interesting to hear about the latest research and treatments out there. Dr. Choate's Gene Discovery Project is beneficial to the understanding of Ichthyosis and how mutations affect a cell. Having a registry of those with Ichthyosis is beneficial for further research for treatments and a cure.

So what did I learn? Lots. Genetic alone was a great lesson. I wouldn't mind another one! A few facts and tips I took from this conference were:

-If you know Ichthyosis runs in your family, it can be tested for through non-invasive prenatal blood work! Way better than an amniocentesis! This is an amazing advance!

-Baking soda baths help with desquamation (shedding of skin). Well for one- I learned what "desquamation" means and two- I learned why we do baking soda baths! We have always done them and I thought it was just to help soften the water for "soft" skin. But helping the shedding process is the biggest benefactor.

-The NIH research funding has been cut by 15%. This would include loosing LOTS of scientists who are looking for better treatments and cures in all types medical research. You can contact your local representative and share your story to help prevent budget cuts.

-FIRST is organizing ways for teens to keep in contact by facilitating programs dedicated to their age group by connecting them in person and via Internet.

-Install a water softener. We have well water and it has a lot of minerals and is very hard. These systems were recommended by other parents who say it has been a big help aiding their child's skin, never mind  your own.

Being a part of this community excited me for Evan's future. I felt so comfortable being with others who understand what it was like to be 'in my shoes'. The information available was impressive and necessary. To know Evan will be in his 'own element' while spening time with others affected is such a beneficial and comforting experience. I know Evan will be just as delighted to spend time with others during FIRST gatherings for years to come. 

Read more about the patient support forum at Mahwah, NJ here:

FIRST Blog- Live From Mahwah and More from Mahwah

Confetti Skin, Beauty Within- Jennifer's Lesson in Basic Genetics


 

Raising Awareness in Our Community

Evan and I participated in a news interview at our home in May. I have been hesitant to share my story with newspapers or news stations since I was concerned they would pitch our story in a dramatic way to gain viewers or readers. The great thing about blogging is that it is always my words and my point of view. I was approached by a news station in southern Connecticut through our Tiny Superheroes crew. Though incredibly nervous I accepted the offer to help raise awareness for Evan and the FIRST Foundation.

In the beginning of May, a husband and wife team joined us in our home to see what a typical morning was like for Evan. We chit-chatted for a while before recording began and Evan was hamming it up from the start. It was a busy morning filled with a bath, breakfast, multiple Aquaphor applications, walker practice, music therapy, play time and then an interview while keeping Evan happy and distracted. Joe unfortunately could not participate as work obligations, again, became a priority. The morning flew by and hours later their taping was wrapped up as Evan got ready for a nap.

I was anxious to see our story. I wanted to see what clips were included and what parts of our interview were shown. I was very happy after seeing the final product and impressed with the quality and professional nature of the clip. I was pleased that everything was positive, though it was hard for it not to be positive since that is how I view our life with Evan. I know only so much can fit into a short video clip but we did discuss Tiny Superheroes and the FIRST Foundation during our interview as well.

By no means do I expect to gain viewers or popularity by participating in this news interview. I would never think of Evan as "famous" since his disorder shouldn't be something that would ever make him "famous".  I had one mission and one mission only, to raise awareness for Ichthyosis. I am glad the interview was focussed on Evan and Evan only. I am glad they did not link my blog or even mention I had one. I know that this blog is a great resource of information to raise awareness and support FIRST but if people are really interested in learning more they could research their time into it or go to FIRST's website which was included in the news clip.

Evan's Story from Matthew Cyr on Vimeo.

Enjoy on News 12 Connecticut's site:
http://connecticut.news12.com/news/goshen-toddler-living-with-rare-genetic-skin-condition-harlequin-ichthyosis-1.5900009



 

Smarty Pants

I LOVE these two videos! Showing off some Evan smarts! These videos represent skills that might be considered "the basics" for most kids but are HUGE milestones for this little guy! He may not be walking or 'talking' like most 3 year olds but he sure is brilliant! (and I apologize that the quality of these videos are poor. I have to convert the files when I use the Sony for iMovie..)

Evan knows his shapes!

And loves to read! Moo Baa La La La is his favorite!

 

THREE Years Post NICU

Wow! My baby came home 3 years ago today! As much as his birthday is a celebration of his life and the milestones he made since birth, it was a VERY intense day and birth experience. I can't help but want to celebrate the HAPPY day when he finally came home to his mommy and daddy... for good! Last year I wrote a post, Two years Post NICU. And here we are again another year later with much to celebrate!

Mommy and Evan 

First day home 8-7-10

Mommy and Evan
Cunningham Tower 8-7-13

Before I go further, I have to update you all on Evan's surgery. Let me tell you how absolutely amazing this kid is! He was in good spirits all morning until the moment he was taken in. While chatting with the Anesthesiologist, Evan was goofy and silly and kept desperately leaning forward to give me kisses, again and again. They allowed me to go back with him until he was under. He didn't cry nor put up a fight with the mask. All the procedures went well. Evan was a sleepy head, napping for over 2 hrs after his initial wake up and slight fuss. The only time he cried was when they took out the IV but recovered very quickly. Maybe the power from his Tiny Superhero cape helped comfort him!

Happy, silly and sitting like a big boy! All ready to go into surgery on 7-31-13

I jumped in his bed and we got to snuggle when he first woke up

Then he took a long snooze before waking up again!

Evan was still in the NICU 3 years ago from his surgery date

With Daddy on 7-31-10

Evan is an amazing little boy. Nowadays he is on the "go" or at least tries to be. He has a mind of a toddler and the mobile abilities of a 6 month old which is frustrating for him and exhausting for me. He loves to be on his feet, which is fantastic, but when he gets tired he wont stop and will not walk efficiently or effectively (and expects me to "do it" for him). I can't imagine how frustrating it is for him to want to move around so bad and struggle to do so. I can see his frustration when he tries to communicate when he wants or needs something and I can't figure out what he is trying to say (though I'm usually pretty good! ;-)). He is fussier now than he has ever been before but I seriously can't complain. It's not all the time but during those specific toddler moments. Like when he freaks out when he doesn't get exactly what he wants or when he is super attached to Mommy and Mommy only. Bedtime is a struggle these days and he throws a fit every time I try to put him into his crib. (But during sleepovers with the grandparents, he falls asleep the minute he gets in the crib with NO FUSSING!) These are all normal behaviors and I am still grateful to experience them, the good, the bad and the ugly!

So now we are moving into the fourth year that I have been home with Evan.  Caring for him everyday. Participating with countless therapies and doctor appointments. Countless baths, aquaphor applications, diapers and feedings. I am so grateful I have been able to stay home with him but now I'
m ready for a break!! Preschool starts in September and boy am I counting the days. I am definitely looking forward to finally having some guaranteed "me" time in the morning. But it is comforting to know that Evan is in an amazing school system with amazing educators, therapists and aides. I feel completely comfortable with him in their care. Not only is school a benefit for this mom but Evan absolutely LOVES it. He is so engaged and happy while he is there and loves to be around other children. I will be soaking up this "me" time this fall but I can happily say that the future looks good to finally get back into teaching!

 "All good things, in all good time!"