Friday, April 27, 2012

All About Evan

It's hard to believe that in almost one month my baby will be two. Evan's second birthday will not be the typical two year old birthday since he is not the typical two year old. He will not be able to feast on cake, snacks and yummy picnic food or run around the yard playing and ripping open presents. Even though I wish he was at the stage where he could do these things, I am extremely grateful he is with us today and very impressed with the progress he has made in the short time he has been on this Earth.

My little man is doing a lot more these days. Some of Evan's favorite things to do (as of right now) are throwing all of his toys onto the floor one by one, nibbling on cheese puffs, snuggling with his monkey or doggie, kicking his feet like a wild man, laughing at Bruli and drinking out of his sippy cup. Like I have said many times, he is a happy little guy and is very content with whatever is going on. He is a mellow little boy yet has his giggling, silly episodes often which make me laugh.

Holding his bottle with NO HANDLES.. Finally

We are working very hard on sitting and propping. Evan can sit on his own for a moment or two but neglects to use his hands and arms to prop to prevent him from falling over. Once he masters propping he will be sitting like a champ. We also practice standing by using his stander and do many weight bearing exercises. Until we got the stander Evan never stretched out his legs even with all of the range of motion exercises we did. After using the stander he stretches out his body and locks his knees more often. Recently he has been putting a little bit of weight onto his feet while locking his knees. And what a wonderful feeling of achievement that is.

Though Evan has been struggling with gross motor milestones (sitting, propping, walking) he has been advancing rapidly with his cognitive and communication abilities. He has been 'picking up' things very quickly since the start of this year. Without visual prompts and when asked Evan will clap, lift his chin up,  kick, splash, bounce, jump, say 'yes' (but shakes his head no), give high five and turn the page of a book. He is starting to really reach and somewhat point for what he wants and will 'find' specific items when asked (pacifier, monkey, doggie, sippy cup).

Silly boy sitting nicely

We recently purchased an iPad for Evan to use as a communication device. There are so many applications to choose from to improve his vocabulary of common objects, communicate by choosing between items he wants, learning sign language and much more. He seems to like it so far and loves to 'swipe' between the different flash cards of animals and draw with his fingers in an art program. We are waiting on Birth to 3 to get the communication application which I'm sure will help him a great deal. It is strange to think my almost 2 year old has an iPad but I will do anything to help this little guy to learn to communicate better.

In most of the pictures you see it may be difficult to know exactly how big (or I should say how little) Evan is. As of right now he weighs 16 lbs 11oz. He has been in the 16 pound range since January. I am anxiously awaiting for him to hit the 17 lbs mark but it is a slow struggle for him. To get an idea of Evan's size, the average 6 month old weighs the same as him. Evan fits into a 6 month old onesie perfectly (if not its still a little big), his head fits into a 2T, he needs 12 month length for his legs and arms yet 6-9 months for his waist, and almost fits into size 2 shoes (for average 3-4 month old). So dressing him is interesting.

Playing with Evan's new iPad

Just seeing how quickly he has been advancing in the past 4 months, I am optimistic for the future. The 'saying' has been that the 'typical' preemie usually catches up by 2 years old and yet again my Evan was not the 'typical preemie' (not to say there even is a typical preemie). When Evan was born, I was told by a very educated woman that it would probably take at least 3 years for Evan to catch up. I am optimistic that this will happen and can't believe it is only a year away. What a warrior we have in our lives.


Wednesday, April 25, 2012


  • Ichthyosis Awareness Month, IAM, starts next week. And it's not too late to get involved. Everyone is welcome to participate in the 'It Makes Cents to Help FIRST' coin collection fundraiser. Read more about this fundraiser HERE.

  • The Mets and the Phillies will be supporting the FIRST Foundation during Ichthyosis Awareness Month.  During games on May 7th at the Philles and May 30th at the Mets, FIRST messages will appear on the scoreboards to help raise awareness. A portion of each ticket will go to the FIRST Foundation. Tickets are still available HERE. We are going to the Mets game on the 30th. Come join the fun.

  • Evan will be TWO YEARS OLD in a little over a month. I can't believe how fast time flies. He makes me smile everyday and fills my life with joy. We recently saw a Neurologist and he was ordered to have an MRI. They found that structurally his brain is perfect. Though there was some concerns about under-developed spaces of myelin which we are hoping intensive therapies will help repair. With all the poking and prodding he goes through from all the doctors we see and therapist that visit, he is a very happy boy. Here is some laughing cuteness for you to enjoy!!


Saturday, April 21, 2012

Being Environmentally Friendly with Ichthyosis

I have always had a soft spot for this planet and try to do what I can to help keep it clean and be environmentally friendly. Having a child makes me even more concerned for this Earth, as I would like Evan to grow up on a healthy, clean planet. Since the care for an Ichthyosis baby requires a lot of sterilization, sterile materials and some non natural items, I do my best to help the environment when I can.

While Evan was in the hospital, I quickly realized and was surprised by how much waste was created because of the gloves, gauze, diapers, wipes, Aquaphor jars/tubes, eye drop bottles etc etc. My husband and I considered using cloth diapers (which was our initial idea for our 1st baby) but with Evan's condition I wanted to make sure we were using the cleanest and most sterile items on his skin to prevent infection. And disposable diapers did not bother him so it was the best choice. I always use gloves when applying Aquaphor which creates a lot of waste. But again, I want to make sure I avoid the risk of infection and we have been very lucky so far.

Fortunately, the Aquaphor jars and eye drop bottles go right into the recycling bin as well as the boxes some of these items come in.  About 99% of the baby food I purchase for Evan is organic and in glass jars, which we reuse and recycle. Another way we help the Earth (unintentionally) is the great use we get out of baby clothes. Since Evan has been a super slow grower, he has pretty much worn out all of his outfits. For the items I can not donate due to stains or Aquaphor residue, I use for sewing projects or rags.

We obviously go through A LOT of water as well. Unfortunately it's unavoidable but we do what we can to conserve. Since Evan is still small enough for his baby tub, we use it once a day and only use about 2 1/2 gallons of water for it. This is a HUGE save until he starts getting in the big tub everyday, twice a day. Our 'big tub' was installed specifically for Evan. It is a MicroSilk tub and uses mini bubbles to 'clean out your pores'. For Evan these tiny bubbles get underneath his scale which helps for easier removal. This MicroSilk tub is actually referred to as a 'Green tub' because the tiny bubbles create energy to keep the water warm without using extra energy. We do not have to use baking soda in the MicroSilk tub so we save on that as well.

Laundry is never ending but luckily we have updated energy efficient appliances. The washing machine also uses less water than the traditional washer. Bleach is a staple, unfortunately, but I know it cleans and kills our enemy, BACTERIA. When I am not using bleach for his laundry, I use a detergent free of dyes and perfumes and I never use dryer sheets.

In the summer it is hard to be energy efficient when it is hot becuase an air conditioner is Evan's lifesaver. We do not have central air but the AC we use is up to date and more energy efficient than the traditional window AC. Our home is tucked into a shady forest which helps keep the temps down in the summer as well. Our local lake and pool are great cooling areas for Evan and these outings can help give the AC a rest for a few hours.

It can be hard to 'be green' when caring for a child with Ichthyosis but we do what we can. Recycling is a must in our home. We recycle everything and reuse anything we can. We do not produce much garbage other than the waste items from Evan's care. I would have a compost pile if it wasn't for the bears and our house is filled with different plants which helps filter the air and decorates at the same time.

I'm sure you all are conscious of our planet and do what you can to help keep it clean and conserve. Even though Earth Day is officially tomorrow we should all celebrate it everyday by keeping it clean for our generations to come.

 LOVE this planet


Friday, April 13, 2012

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.




Tuesday, April 10, 2012

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!!!


Wednesday, April 4, 2012

'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 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: