Getting Started

Only Two Weeks Away till IAM

IAM, Ichthyosis Awareness Month, starts on May 1st. I have started making my collection jars and will be handing out and sending out materials very soon!! Thank you all for your participation and support in order to raise money for the FIRST Foundation as well as raising awareness for Ichthyosis. For those of you who would still like to participate please contact me so I can make sure I have the necessary materials for everyone! For more details about my "It Makes Cents to Help FIRST" coin collection fundraiser CLICK HERE. All donations can be sent to: Evan's FIRST Fundraiser- PO BOX 500 Goshen, CT 06756. All check donations payable to the FIRST Foundation. Thank you.

Remember,

EVERY PENNY COUNTS!!!

A Day in Our Life

A day in our life is pretty busy. Evan keeps me on my toes for sure!! Even though Evan is smaller than the average 6 month old, he is definitely acting like a toddler. Aside from skin care, the baby care is pretty exhausting as well. I do not get much down time on a typical day. If Evan is content playing or sleeping I am usually doing housework. After seeing a Neurologist in March, we now have more therapy appointments during the week which only leaves one day open for doctor appointments and we usually have at least 3 doctor appointments a month.

I have written in earlier posts about the care Evan receives in a day. Instead of journaling another 'typical day' I decided to record video clips of our daily routines (these iPhones come in handy). This video is a collection of short videos of some typical things we do in a day. All of the clips were taken yesterday April 9, 2012 which was also the day Evan turned 22 MONTHS!!!!! I was able to edit and create this video thanks to an unexpected break yesterday. My husband arranged for his mother to watch Evan so we could have some time off to do some gardening. What a guy!!!

'Ichthyosis Awareness Month' Starts on May 1st

This blog was created with the determination to raise awareness for Ichthyosis. Since May is Ichthyosis Awareness Month, I plan on participating in a fundraiser which will benefit the FIRST Foundation. As I have mentioned in an earlier post, I plan on pursuing the event, which was created by the FIRST Foundation, "It Makes Cents to Help FIRST".

"It Makes Cents to Help First" is a coin collection fundraiser. I plan on putting collection jars in many local businesses, restaurants, staff rooms and teacher rooms.  I will make collection jars with customized labels with some information about Ichthyosis to help educate others. For anyone who lives in the area and would like to participate, I will provide jars for you. If you would like to participate but live out of town or state, PLEASE contact me and I will send you my customized label so you can put it on your own jar. I appreciate all of your help in order to collect money for this worthy cause. Every penny collected will be donated to the FIRST foundation in Evan's name.

Since I had never heard about Ichthyosis until Evan was born, I realized how unfamiliar this disorder may be to many people in this community, state, country and world.  A mission to raise awareness does so much good for so many reasons. Educating others in our community will be such a benefit for Evan as he grows up and starts going to public school. For others to have an understanding on the facts about Ichthyosis and not the misconceptions, will help them become more comfortable about Evan's condition as well. Most people who stop to ask questions while I am at the grocery store, a public event or park want to know why Evan's skin is so red. About 95% of my experiences have been with curious yet polite strangers. The first question they ask, after I explain that Evan was born with a genetic skin disorder, is 'will he grow out of it?'  How I wish I could say yes and that was the case.

I believe that raising awareness in our community, surrounding towns and even state can help make Evan's life a bit easier. Once people are aware it may not seem so 'out of the ordinary'. By educating others is also a way of educating myself since there is still a lot more I know there is to learn about this lifelong disorder. And now I am ready and eager to not only raise awareness but to also raise money for a good cause.

So here is the plan....

Email me, De De, at dede583@hotmail.com. In the subject box please write 'FIRST Fundraiser'. Let me know if you would like to participate so I can begin to gather and create collecting jars. If you live out of state and would like to participate, please give me your address and the amount of labels you will need for collecting jars so I can send them to you. During the month of May put your collection jar(s) out in your workplace or business to help collect donations while educating others about Ichthyosis. You can leave your jar out for 1 week, 2 weeks or for the whole month of May, it's up to you. At the end of the fundraiser the counting begins!!! You can choose to count the change and then write a check out to the FIRST Foundation for that exact amount. You can then send the check to me so I can send all of the donations in at once and tally up a grand total! Or if you live in the area and do not want to count the change, you can give your collection jars back to me, I will tally up your donations and let you know how much your workplace/business earned for the FIRST Foundation. Remember EVERY PENNY COUNTS!!!! :-) 


All donations can be sent to: Evan's FIRST Fundraiser- PO BOX 500 Goshen, CT 06756. All checks payable to the FIRST Foundation.

This is the first time I am 'hosting' a fundraiser for FIRST, so I am trying to make sure I work out any kinks. I am very excited to raise awareness while earning donations for this amazing foundation. Your efforts will help make it possible to fund research to find better treatments and eventually a cure for this lifelong disorder.

This is similar to what I will make for labels:

Remembering a Special Woman on 'Parents of Preemies Day'

Last year my life was so hectic that I did not celebrate or even know there was a day dedicated to parents of preemies.  The first 18 months of Evan’s life were some of the hardest days I have ever experienced. But nothing compares to the hardship of loosing someone close to you. And unfortunately in the beginning of 2012 we lost an amazing woman who played a vital role in saving Evan’s life. Barb was a clinical expert at Yale’s New Born Special Care Unit and had experience with Ichthyosis. Today is 'Parents of Preemies Day' and a memorial was held at Yale where many of Barb's friends and colleagues spoke, as well as myself, in her honor.

When Evan was born I had mixed emotions about the intensity of having a 31 week old baby, with a severe genetic skin disorder. It is such a rare skin disorder that many doctors and nurses have never seen or will never experienced cases like Evan’s. But fortunately for our precious baby, Barb was there to save him.

Barb was awaiting Evan’s arrival on that Wednesday afternoon almost 2 years ago.  Not only was she was prepared, she help the other nurses and doctors by giving them information, such as identifying specific precautions and care instructions for a baby born with severe Ichthyosis. Barb had cared for another baby in the NBSCU about 18 years prior with a similar condition. Having Barb there for Evan’s birth was a blessing for us.

The first few days I was at Yale, after Evan was born, are a blur to me. I cannot remember the very first time that I met Barb. But I do know that before I was even discharged from the hospital, I felt like I had known Barb my entire life. She was such a warm and friendly person. Days after Evan was born, I remember walking into the NBSCU and talking to Barb about all the progress Evan had been making in  the very short time he had been alive. She made me feel so comforted and gave my husband and I so much hope for Evan’s survival.

Even though I could not wait for Evan to be discharged from the NBSCU, I enjoyed going there and being with Barb and all of the other nurses that cared for Evan.  We had such a loving NICU team. Almost everyday when I went in to see Evan, Barb had pictures printed out for me of Evan’s progression. Pictures taken only days apart looked like progress that you would think would have taken weeks! Barb was always so happy and excited when she had a new picture to share. And she LOVED when I emailed pictures of Evan that were taken on the weekends while she was not working.

Once Evan was discharged it was a wonderful feeling. It made me a little sad in the fact that I would not get to see Barb or the other nurses everyday. We had developled such a strong bond over the 58 days Evan was in the NBSCU. Pictures emails were our main source of communication. With Evan’s condition, time made such a big difference in regards to his appearance and I felt like it always made Barb’s day when I sent her pictures. And from what I have been told, Barb only had two pictures in her office; one picture of her mother and one picture of my precious little boy. We still saw Barb every time we had an appointment at Yale. And I never thought I would EVER be so excited to go to the 4^th floor of the Children’s Hospital!

A few months after Evan was born he had to stay overnight at Yale for a minor surgery. And again Barb came to our rescue!! She made sure the proper precautions were made for Evan when he got out of recovery. She printed out information about Evan’s condition and went to educate the nurses who would be taking care of him to be sure he was in the best hands. She even brought up an Isolette to Evan’s room to make sure he had a humid place to sleep to help protect his skin. I remember it was a Friday and Evan’s surgery was delayed a few hours. We did not get out of recovery until 7 or 8 at night and when we went upstairs to his room there was Barb waiting for him to make sure we got settled. I was so touched by the care and dedication she had for my child. She really was Evan’s angel on Earth.

One memory I will never forget, is when Barb came to Evan’s first birthday party. It was such a milestone for us and I am so glad she was able to share it with our family. We even got a group picture of my husband, Evan, Barb and I that I will forever cherish.

We will miss Barb dearly. She led an amazing nursing team who she educated about Evan’s condition, which is why he is here today. She was such a kind and loving woman and brought so much happiness into our lives. I wish Evan could have grown up with this amazing woman in his life. But even though Evan may not remember Barb, he will definitely know her for what a dedicated, loving, and caring nurse, friend and angel she was to him and how she helped save his life. She was Evan’s angel on Earth and now she is an angel looking over him.  We love you Barb and will NEVER forget you.

Evan's 1st Birthday Party

Evan's Best Friend Bruli

When I found out I was pregnant with Evan, we just got a Chocolate Lab puppy 2 days prior. And let me tell you, being very sick and pregnant with a crazy puppy was no walk in the park!!! Bruli DROVE ME CRAZY!! His puppy breath made me nauseous and watching him run around made me extremely dizzy! I was bummed that my horrible case of 'morning sickness', which lasted all day for more than 18 weeks, was making me dislike this beautiful little puppy!

I remember thinking to myself, I cant wait until he is out of this puppy phase!!! Once he was a few months old and my 'morning sickness' died down I was able to enjoy this adorable pup! As many know, Chocolate Labs are just a tab bit hyper. So thinking about a newborn baby with a crazy dog made me very nervous especially since Bruli was suppose to be 'the baby' for a few years.

As I have mentioned before when Evan was born, the first question I asked the dermatologist was, "What about a cat and a dog?" Thinking about Evan's skin condition and a crazy dog made me worry we would 'no longer be able to have any animals'. Luckily that is not and was not the case! Though, when Evan came home we were very cautious and concerned about Bruli or Teala (my first cat) getting too close to Evan.

Obviously we are more laid back now. Bruli is a wonderful dog and is so protective over Evan. When Evan cries or is upset, Bruli will walk over to him and rest his head on his lap. Other times Bruli will wait and comfort Evan while I get his bottle and Bruli will keep looking back at me like "what is taking you so long?" For a 70 pound dog he is very gentle when he is around Evan. He will lay down next to Evan when he is on his play mat and Bruli tries to lick the food remnants around Evan's mouth after he eats! Evan is always giggling at things Bruli does since he is a major goofball! He is constantly reaching for Bruli when he is near him and surprisingly is not at all frightened when Bruli barks or acts crazy.  There is no doubt that they are buddies and I cant wait until Evan is older and is running around in the yard playing with his pup!

Kisses from his buddy

Calling All Sports Fans

TICKETS ARE NOW ON SALE

             

This year FIRST is hosting two Ichthyosis Awareness Nights during Ichthyosis Awareness Month.  This is an opportunity for FIRST to create awareness at the ballparks and have their message on the stadium scoreboards.  FIRST also receives a donation back for each ticket sold!

Join us at Citizens Bank Park

Monday May 7, 2012

as the Philadelphia Phillies take on
the New York Mets.
To order tickets to the Phillies game click here

Join us at Citifield on

Wednesday, May 30, 2012

as New York Mets battle the Philadelphia Phillies.

To order tickets for the Mets game click here.

We plan on attending the Mets game at Citifield. It will be Evan's first baseball game and though excited I am quite nervous. I have never brought Evan to such a large public event, never mind in a big city. Luckily it is an evening game, so there is less concern with overheating issues as there would be on a sunny afternoon. On a positive note, I am looking forward to meeting with other FIRST members & families, especially since this will be the first FIRST event our family has attended.

If you live in the Northeast this will be an enjoyable event while benefiting a great cause. Hope to see you there.

 

Our AMAZING Community

Words cannot even describe how grateful we are for the amazing community we live in. This year, Evan was chosen as a recipient, for the second time, for the Possum Queen Contest. Many friends, family and gracious community members came together for this 22^nd annual event. Together as a community their goals were to raise money for our family and 3 others who are facing challenges with overwhelming medical care and the finances associated with it.

In December 2010, when we were told Evan was chosen as one of the beneficiaries for the 2011 event, we were very excited, but still were unsure of how ‘The Possum Queen Contest” worked. It all started over 20 years ago when two men, Billy Neller and Brent Hawkins, were ‘bored and in need of a New Year’s Day drink’, which resulted in a few bribes and then later morphed into a charity for families in need after one of their friends had a child who was born with a medical condition.

"The Possum Queen Contest has been referred to as an “accidental charity” and its first event turned out to be more of a party than a fundraiser". The event was given its name ‘as a joke’ based on the Beverly Hillbillies TV show and their Possum Day Festival. This fundraiser was hosted at a local bar & restaurant, which later moved ‘uptown’ to The Village Restaurant for many years and has gotten so large, that it is now celebrated at The Litchfield Inn.

Unfortunately, I had never heard about this event until Evan was chosen as a recipient. Experiencing ‘The Possum Queen Contest’ on ‘Possum Day’ is a fun filled, exciting, and silly fundraiser full of positive energy with extremely kind and generous people who are dedicated to help the families involved. It has evolved into a fundraiser which includes a live and silent auction as well as teams who  raise money and perform skits in hopes to earn the Possum Queen title.  The skits that are performed, are incredibly entertaining, and are judged by Billy and Brent who will name the winning group the “Possum Queen”, after “bribing” the judges, with donations, of course!!!! It is a day to relax, have fun and help people who are in need all at the same time.

We feel so fortunate to live in THIS community. We are so blessed to have such wonderful, caring and selfless people in our lives. The first Possum Queen Contest I experienced was great. I was still a bit ‘over protective’ of Evan and his condition and it was really the first time we talked about Ichthyosis with the community. This year, now being more comfortable talking about his condition and caring for it, I was able to really enjoy the event and ‘relax’ a bit more. (For Possum Day ‘relax’ really means have a drink)

Though this year, I was also much more emotional as well. Now being more comfortable with Evan’s care I feel I have ‘let my wall come down’ a bit. Now that I know Evan will ‘be ok’ under my care, has caused my emotions to finally come out. When Evan was first born, I would not let myself get sad and rarely cried. I stayed strong and positive for my little warrior. Now some of those ‘left over’ emotions come out at times.

The emotional feeling I get when I think of what an amazing, caring and generous community we live in brings tears to my eyes. These emotions I cherish. We are so incredibly grateful to everyone who is involved with the Possum Queen event. Now we are hooked for life and cannot wait to be a part of this fundraiser in order to help other families in the years to come.

And of course a message from Evan:

Here are a few video clips from some of the silly skits performed in hopes to earn the Possum Queen title. Or click here see some great photo slide shows and more video clips.

2012

2012

2011

2011