Our Facebook Page

I created a Facebook page so that everyone can keep up with my little guys at a finger's reach. I told myself I wouldn't, as I have the blog to update everyone but it is honestly easier & faster to update Facebook. Though I still plan on keeping up with the blog, I could also update the FB page when I don't have a chance to sit down at the computer to write.

Now that both of my boys have specialists to tend to, I wanted to be sure all of my family, friends and friends of friends are able to find out what is the latest news with my boys. Soooo here is the latest:

Evan, as you read already, is on the move. He is crawling all over the house, rolling around his cars and trucks. He loves to sit under the piano and tap on a drum or strum his little Mickey Mouse guitar while I play on the piano. He LOVES to play with the baby and show him his toys. He is such a great big brother and always tries to comfort the baby when he cries. He loves to help hold Vincenzo's bottle or "change his diaper". Evan says, "Goodbye baby. I go school now," every morning before  he leaves and "baby I home now," when he gets back. It is quite adorable.

Vincenzo is growing up fast. Something that is foreign to me since Evan takes so long to grow. He is wearing 6 months clothes already and is a whopping 15 1/2 lbs at almost 4 months old. He's wearing clothes that Evan was wearing when he was a year old!!! We recently were at the doctors following up with Cardiology. Vin had his 3rd EKG and Echocardiogram and did a very good job staying still for the doctors. Not sure how that will work when he's a wiggly 6 month old! All test came back good and the tumor in his heart has not changed size which is good in Cardiology's eyes.

We are getting very excited for Christmas! I hope everyone has a very happy holiday!!!

Check out our Facebook Page here!!

 

Tis' the Season

The Holidays are rapidly approaching and Evan is just delighted! He is very much into Christmas this year and Santa and PRESENTS!!! It is such a joy to see him get all excited over decorating, making cookies and getting & wrapping gifts. I have been anxiously awaiting for Evan to understand this season.

When we went to cut down our tree, Evan kept repeating over and over "Im so excited! Im so excited!" We brought a sled and everything as this was this first year there was snow on the ground while picking out a tree!!!

Evan had a holiday sale at school so he had the opportunity to buy presents for the family. I heard he took his present buying very seriously and never once asked or wanted anything for himself! A true gift giver!! I can't wait to see what he picked out for me. I have a feeling it will be by far my favorite gift.

But as much as it is the "season of giving" it is definitely a time to remember and be grateful for our blessings and the wonderful life we get to live. This is Vincenzo's 1st Christmas and Evan's 1st as an eager Santa fan! This will be a memorable holiday for sure!

Cookie Time!!!

 

Beyond Thankful

This year has been eventful. My pregnancy was quite the adventure from start to finish including a hospital stay at 36 weeks due to high calcium resulting in a parathyroid removal surgery at 37 weeks. I gained a whopping 60 pounds and gave birth via cesarean to a 9lbs 9oz chunker. As you may have read last month, Vincenzo has his own set of "challenges". Nothing like Evan but enough to cause worry and questions. But I still cannot help but be incredibly grateful for my perfect children and my perfect life.

Perfect. A word that many people strive to be. But what is perfect? I absolutely do not strive to be perfect in society's eyes nor want to be. Perfect has a different meaning depending on who you ask. And to me, perfect is what I want it to be. Perfect is being happy with your life. Perfect is being happy with yourself. Perfect is cherishing every moment with the people you love. I am happily married and have happy children. If you ask me, that's pretty perfect. The saying goes, "There is no such thing as perfect." This is true in respect to society's perfect because that perfect is not real. Perfect is what is perfect to you. I have my perfect so I can't say that it doesn't exist. No, it may not be what many consider perfect but it is to me.

This Thanksgiving is very special to me. My family is complete now that Evan is a big brother. We have 2 new babies in the family other than Vincenzo, who we will get to visit with on this holiday. I am beyond thankful for my family. And that goes for every single person in it. My parents and in-laws have been a huge help since the baby has been born (and obviously prior to). They have given me breaks and I have gotten many full night's sleep. They bend over backwards to help us when we need them and I am incredibly grateful for that.

My husband is truly an amazing person. I am so thankful for everything he does for our family. He works so hard to provide for us and makes it possible for me to stay home with our boys. Something that I do not take for granted and am so privileged to do. I know there are mornings when he's leaving for work before 6am wishing he was the one who got to stay home. He is such an amazing father and if you thought Evan had a nice smile, you should see it when Joe walks in the room. Evan absolutely adores his daddy and Vincenzo too!

I am beyond thankful for the life I have been given and the life I get to lead. I love my normal. I love my perfect family, pets included! I hope you all have a wonderful Thanksgiving and holiday season. Remember to not take the precious things in life for granted. Spend as much time as you can with your loved ones and cherish those moments.

 

On the Move

Evan has been army crawling for months now. While I was pregnant most of his crawling was done in his room on his play mat. I was nervous to let him crawl around on the hardwood as I didn't want him to fall over and bump his head. It was obvious he was getting the hang of it and if he actually did fall over he knew to keep his head up to prevent it from whacking the floor. So I let my guard down and let him have free roam of the living room/kitchen area.

Though I never thought it would take 4 years for him to do this, I always wondered how crawling, aquaphor and dog hair would pan out. And yes, just as I presumed, a sticky mess! Luckily Evan's new found motor ability has kept me cleaning the floors constantly. I vacuum, swiffer, mop, then swiffer again to make sure he doesn't collect too much dog hair/dirt on his skin. No matter how much I clean the floors he still ends up finding the spots I missed, so he tends to go right into the bath after a good hour of crawling around. Then ironically enough the floors are sticky with aquaphor when he is done leaving me to cleanup yet again. But hey- totally worth it!

He is able to get onto 4 point (hands and knees) with no problem but has NO balance and tends to face plant when in this position. He will only go on four point when I ask him to as he remembers the result of his balance issue. He will use 4 point to get into a sitting position from laying down. Yet another huge motor milestone. While this transition is also a bit unstable, he has been achieving it more and more with less falls and little spotting.

His favorite thing to do these days while crawling, is investigating the piano room. Yet another floor to clean for him but more area to explore and move around on. It's a new world having him move on his own, something his brother will be doing very soon too! Here is some footage of Evan on the move!

(If you were curious to what Evan says at the end of the video, he said "I want Daniel Tiger". His new favorite show)

 

Life with Two Kiddos

Life has been very busy as a mom of two. Evan kept me busy as is, add a newborn and WOW! I am still adjusting, trying to make sure Evan gets just as much attention as before without him feeling jealous. Luckily he has been a very good brother and the jealousy has not surfaced yet. The worst I get is Evan saying "Mama, put baby down," in order to get something he asked for. I chuckle and think it is pretty darn cute that he thinks I cannot multitask!

With a new baby comes times where I find myself "keeping Evan busy" so I can feed the baby or do baby "duties". This usually means Evan is watching a show on the iPad. He is currently obsessed with Daniel Tiger's Neighborhood. He sings along with all of the songs, giggles and repeats most of what they talk about on the show. Fortunately he is learning something. Life lessons/morals like taking turns, listening to directions for safety, being calm when need be, thinking happy thoughts when scared and the list goes on. I feel guilty sticking him in front of the iPad but recently he begs me to watch it. Over and over and over. Luckily it is not the only thing he does in a day.

Evan is starting to become more independent and is now army crawling all over the house. It could not come at more of a perfect time. He loves to scoot all over the place with some cars and balls. We make forts with big boxes and sheets over the couch and coffee table. I've made him a road, with masking tape, that he got a kick out of for a few days. He is definitely enjoying the independence and I do not feel as guilty as he is doing something motor, FINALLY!

School is going very well for Evan. He still LOVES it and is the happiest kid as he boards the bus. He loves being a big brother and is quite the helper too! Enjoy the video and current pics of our boys!

Halloween: "Smarty Pants and Tigger"

He refused all other costumes!!

Fall hikin' with the boys

Playing with Bruli! He always tells Bruli to come in his fort!

Such a good big brother!!

Good News

We did not win the "lottery"!!!!!! According to genetics, they did not find the gene which causes tuberous sclerosis in Vincenzo. Yay!!! Even though we are not out of the woods yet, this is a huge relief. And granted genetics are never 100%, this lightens the worry load for now! So in the meantime I will enjoy my babies with a little less worry! Evan keeps us on our toes as is!!!

 

I Don't Want to Win the Lottery..

We have delt with our fair share of medical challenges with Evan. From a life long diagnosis and a two month NICU stay due to a premature birth including strict skin care regimens, blood transfusions and an emergency hernia surgery; it's enough to last me a lifetime of worry. It hasn't been easy but we have remained strong for Evan to get through the bumps along the way.

Evan's condition is rare. So rare, it's a -one in a million- type of occurrence. For Joe and I to both have this genetic mutation and then to pass it on through a recessive gene, is rare in itself. It would have been easier for us to win the Powerball but instead we won the "genetic mutation lottery". A lottery I was hoping to avoid with our second child. And as we avoided the harlequin "lottery". A new set of challenges have popped up with our newest bundle of joy.

Five days prior to his birth, my high risk doctors found a "mass" in the baby's heart. After seeing these doctors for 9 months (because of my preterm history) and receiving multiple ultrasounds and non-stress tests, I was very surprised this was happening. Well sort of. After everything that happened with Evan, I almost felt it was too good to be true to have a "normal" pregnancy. Yet what is normal when you have to have a surgery to remove your para-thryoid at 37 weeks pregnant? (A whole other story!) But when the doctors started focusing on the baby's heart, mine pretty much stopped. Why? WHY?!?! How could we be going through this again?  How could our baby be going through this? How could something be wrong???? I thought we were done with specialists and medical concerns for at least one of our children.

The day of Vincenzo's birth was still a very happy experience. Though there were still concerns and cardiology would be following him after birth, it was not traumatic like Evan's birth. It was a nice change to actually hear him cry and be able to see and touch him immediately following birth. Being able to touch him moments after was so new to me. His skin was so soft and he was so happy to be snuggled up next to my cheek. Though he did head right to the NICU after he got his kisses from me and my husband. The NICU, an all too familiar place. A place where he was monitored the first day of his life receiving an EKG and heart ultrasound. A place where he was being cared for by the very same nurses and doctors his big brother had. A place I never thought we would step foot in again.

After lots of tests and doctors visiting the baby, they decided to test him for tuberous sclerosis. A genetic condition that occurs spontaneously. This condition causes benign tumors to grow in different organs, primarily the heart, brain, kidneys and eyes. These tumors can causes issues depending upon where they are found. Testing for this is just the first step in trying to figure out what is going on. As of right now the "tumor" in Vincenzo's heart is not causing any issues. While in the hospital he received a brain MRI and kidney ultrasound to check for any abnormalities, all to which came back normal. We are hoping that he does not have this disorder and the mass they found is a random one time thing that will dissipate on its own.

For both of my children to have two different random genetic mutations makes me feel like we won some sort of genetic mutation lottery. I am hoping it is not the case with Vincenzo. We have enough on our plate as is and it is hard enough to see one of our children have to deal with lifelong medical challenges. I cannot imagine both of them having to. Let's hope we don't win this lottery.

 

Dear Evan

A week after Evan was born National Geographic aired the show Extraordinary Humans: Skin. The show followed two young adults living with rare skin disorders, one being Harlequin Ichthyosis. It was amazing to me that a week after Evan was born, after hearing the words "Harlequin Ichthyosis" for the first time in my life, there was an episode detailing the disorder. It documented a young woman affected, Hunter. This was the first time I had heard about Hunter and I was so intrigued to see how she lived her life in a positive light. The show answered many of our questions and we were able to see that it was possible to live a normal life with this disorder.

Hunter is a huge advocate for Ichthyosis Awareness. She recently was on the Katie Couric Show explaining this disorder and what it is like living with it. She has always been a huge motivation for us and for Evan. It wasn't until this past summer that we were able to meet Hunter. I was excited as this was the first time meeting her in person. Though I had never met her before, I felt like I had known her forever. Evan took to Hunter right away too. He seems to be aware that Hunter is just like him. We had a lovely time visiting with her and I am so glad we had the opportunity to meet in person.

I asked Hunter if she had any advice for Evan as he got older knowing she had experienced quite a lot in her life. This is what Hunter had written to Evan:

Over the course of my life thus far, I have come to a number of useful conclusions. Here is advice I have for Evan as he grows!

Dear Evan,

First things first, you are a wonderful person who possesses unbelievable love for people! Never lose it! Sometimes this world can make you forget how valuable you are. You are valuable and loved! There have been so many instances where I forgot the support that I have around me. You will always have people in your corner!

            Be prepared to advocate! A big part of being as special as you are is being able and willing to tell other people about yourself. Remember that most people have never seen a person with Harlequin Ichthyosis before. You don’t have to tell them anything, it is your choice, but I have learned from experience that being more open with people will draw people to you. If you are unafraid to speak up and be you, other people will draw on that strength. I know it is not always easy or pleasant. It takes a great deal of patience and understanding but believe me when I say it is worth it.

            Sometimes though, people won’t be so receptive of who you are. People can be cruel. There were many times that I have been singled out for being different and made to feel ashamed for it. Be aware that some people will do this. However, not everyone is like that. The majority of people you will run into will be willing to at least attempt to understand you. Whatever you do, never assume the worst in a person. There is always more to the story than what you are experiencing.

            Don’t be afraid to stand up for yourself! When you do encounter someone who treats you unkindly, don’t be afraid to stand your ground! This goes back to what I said earlier, do not let them tell you that you do not have value because of your skin. Your skin makes you uniquely you, people who ostracize you for it will never understand that. At the same time though, do not let your skin become you.

            I know that sounds strange but trust me, it can happen. When I say not to let your skin become you, I mean do not let it dictate who you are and what you choose to do. You will have to work around it sometimes, but working around it is not the same as letting it make your choices for you.

            Life is not always easy but it is always rewarding! For as much crap that happens, there will always be a light at the end of the tunnel! Do not give up! Perseverance is a trait that people admire and attempt to emulate. Not giving in will not always be easy but you will earn the respect of those around you. You deserve that respect! It is a reflection of your strength!

            You are awesome and I will always be here for you! I cannot wait to see the kind of person you grow into!

                        Your Friend,

                                    Hunter Steinitz

Here is the video of Hunter on The Katie Couric Show

Family of Four

Evan is a BIG BROTHER!!!

Vincenzo was born on August 27th and we have been loving on him for the past few weeks! Evan is delighted to be a big brother and is adapting well. He loves to "hold" the baby and loves to give him kisses. He comforts the baby when he cries and says "Don't cry baby, its ok." We are happy and so glad our family is complete.

Obviously life with a newborn and 4 year old is busy, busy, busy!! Ill be sure to do my best to keep up with the blog when we have our routine set!! I'll be adding pictures to Evan's Instagram account more often so check them out!!

 

Summertime

We have been pretty busy so far this summer. Though we have a love/hate relationship with the weather and high temps, we try not to let it hold us back from doing activities outdoors. Obviously on the brutally hot and humid days, I try to find new activities to do indoors. We have been managing well so far and the weather hasn't been too much of an issue... YET.

FIRST National Family Conference
Evan started his summer break with a trip to Indianapolis to the FIRST National Family Conference. It is held every 2 years and this was our first time attending. My sister in-law joined us since my husband was unable to attend. We had a marvelous time and met some wonderful families. Some families I "knew" from the internet but finally had the chance to meet for the first time, some brand new faces and some friends we have known for a few years which we connected with once again.

Spending time with our buddies

Evan spent the days in a kids camp with other affected and non affected children his age. He loved it! Every time I dropped him off he was instantly busy in some sort of activity they had set for the children. And I heard through the grapevine that he was basically one of the only kids that didn't cry. No shocker there! While Evan was at camp my sister in-law and I attended different sessions that ranged from genetics, to current research, to skin and social tips. All were beneficial and I look forward to attending again in 2 years.

Evan with his friends Hunter and Lauren

(Hunter was recently on the Katie Couric Show raising awareness. Check it out HERE)

Evan and his buddy Brenna

The last night they held a dinner dance party which the children just loved. Evan was anxious to be on the dance floor with the other children and thank the lord for my sister in-law who walked around with him and helped him dance! My pregnant belly makes it hard for me to do! We were able to snap lots of pictures of Evan and his buddies. And we also had the wonderful oppotunity to meet Rick Guidotti, a former fashion photographer who now advocates while photographing those with genetic differences (learn more about Positive Exposure HERE). He was kind enough to photograph Evan as well as photographing Evan with all of the children and adults affected with Harlequin Ichthyosis.

Groovin' on the dance floor with Auntie

Hugging his pal Calvin goodbye

Evan's first trip to the Zoo
We like to plan things out for perfect weather days, so when we saw the temps and humididty would be low we headed for the zoo. We went to the Beardsley Zoo, about an hour from home, which is not terribly huge but just the perfect size to get the zoo experience and see some monkeys. Evan was delighted to see a range of animals and seemed most excited about the leopard who was pacing around in her den. It was a nice family outing and I look forward for new ones in the future.

Checking out the animals with Daddy

A visit from Mickey Mouse
Evan just loves anything Mickey. He is obsessed with the show, can't get enough snuggles with his stuffed animals and never gets sick of reading the Mickey Mouse books over and over. My father in-law has a friend who is a big collector of Mickey items. He also happens to have a real Mickey costume which he has been wanting to show Evan. Luckily we were able to plan a day for "Mickey" to come visit and Evan was just ecstatic! He could not get enough of the "big Mickey" that was standing in his living room. It was a precious memory I will never forget!

Fishing with Daddy

Joe is big into fishing so it is no surprise he wants Evan to learn how to fish too. We live in a lake community so we have access to fishing any time of the year (yes even in the winter!). We brought Evan down to the lake one evening to try and catch the "big one". Our first attempt was not successful but at first you don't succeed.... Another evening we headed down again, this time a bit more prepared. Joe would help Evan cast the line and Evan would reel it in on his own. We started getting a bite and the fish was able to steal the bait a few times. Of course on our last cast with our last bait Evan hoooked one! I think Joe was more excited than anyone! It was another memorable moment of a dad and his boy fishing.. a baby small mouth bass too!

His first "lunker"

Summer School
As much as summer time usually does not involve school, Evan receives services during a summer program. He couldn't be happier! He goes 3 days a week for 3 hours and is such a happy camper to see the bus back in the driveway. He waves and says, "Hi school bus, my school bus!" every morning with a happy squeal in is voice. He waves goodbye to me with a big smile on his face ready for the day.

Parachute fun at school

Excited for the baby
We are coming down the home stretch and Evan's little brother should be arriving in a month or so. We constantly talk about the baby with Evan which he gets very excited about. Every time we come upstairs he insists on going to see the "baby's bed". We go into the nursery and Evan explores the room opening every dresser drawer. He seems delighted about the idea of a new baby so I am anxoious to see how he will react when the baby comes and is part of the family. Evan is such a happy well behaved boy that I have a feeling he will adjust well.

Already lovin' on his brother

 

Evan is FOUR YEARS OLD!!!

We celebrated Evan's 4th Birthday on Monday and had a birthday party for him last weekend. It is quite amazing how time flies and how my little man not only turned 4 but is finishing his first year at preschool. Wow, has he come a long way! The important things in life such as happiness really make our lives complete. This child is literally the happiest kid I know and it melts my heart to know that he is clearly enjoying his life.

Things were so uncertain the day he was born. Though I was certain he'd survive, I wasn't sure of how life was going to be for him. Now it's obvious that things are going well. He is improving (developmentally) everyday with speech, gross motor and fine motor abilities, his skin care is consistent and our normal which has kept him infection free (knocking on wood) and he is so happy, silly and playful like any other toddler I know. His pleasant and joyful disposition makes me think his little brother-in-brewing is going to give me a run for my money!

Happy Birthday to my special warrior. You have proven yourself to be a fighter and I know you will go far in life. Keep smiling sweet boy!

Mickey Mouse Birthday Party!

 

A Visit from Carly

During Evan's first Spring Break, we had a very special guest stay with us. Carly, author of Tune Into Radio Carly, came to stay with us for a few days. Carly is from Australia and was traveling through the States and stopped for a visit in our neck of the woods. I met Carly online, through Ichthyosis support groups. Carly is affected with the Netherton form of Ichthyosis. We started our friendship through social media; comments on posts or pictures which led to conversations through messaging. In 2012, Carly was planning a trip to the States and was making a stop in NYC. I asked her if we would be able to meet for dinner and she kindly made time to meet me. I was lucky enough to even meet her mother as well! We had a lovely time and our friendship blossomed from there.

When Carly mentioned that she was planning another trip to the States this year, I jumped at the opportunity to offer my home to her. Fortunately she was able to fit a visit in to come see us. We had a lovely time. It was the first time she was able to meet Evan (as I did not bring him into the city to meet her a few years ago). Evan was just delighted and took to Carly instantly. Every morning when he woke up he would say "Where's Carly?" and point to the gifts she brought him from Australia.

We enjoyed our days chatting and laughing. We were able to meet up with a few ladies from the FIRST Foundation for lunch which was so great. I'm glad we were able to arrange a time to see them as I know they were anxious to meet Carly as well. Carly even tried out our MicroSilk tub while she was here. I was curious to get an adult's perspective on how effective it was on the skin and she seemed to like it. The days she was here were so enjoyable and I had such a lovely time hosting her. She pretty much got the whole New England weather experience too. One day was warm and sunny, the next cold and rainy and it even snowed a few inches on the last night she was here!  I cannot wait for another visit with her. Though it's my turn to head to the land down under!

Be sure to keep up with Carly's blog this month as she also celebrates Ichthyosis Awareness Month. Each day she is featuring a story written by someone who is affected or a parent of a child affected by Ichthyosis. Such a great way to raise awareness and learn more about this life long condition.

Carly featured our story last week you can read it HERE!!

A Day in Evan's Life 2014

Yay! It's May! Not only is May my favorite month of the year but a month we celebrate while raising awareness for Ichthyosis. A lot has been going on here, hence the reason for my lack of posts. Evan is a busy boy. He is at school for a couple of hours in the morning and after that it's Evan and Mommy time. He has me wrapped around his little finger but I don't mind. It's actually kind of cute how much he loves me! Even if he is relaxing on the the couch watching Mickey Mouse, he wants me sitting right next to him. His newest thing is "Look mama" at every little thing. Whether it's a picture in a book, something on the TV, a duplo tower he made or noticing Bruli out the window; he is in constant need of my attention and recognition. Something that will change quite a bit once his baby brother comes!

Evan will be FOUR YEARS OLD in one month. Hard to believe really. And although he is not motor like most 4 yr olds he is making his way and is still as happy as ever. I am really enjoying his speech development. We are on the verge of having actual conversations. He will say things spontaneously whether it is a comment or statement. He is quite the echo too and repeats things I say or thing he hears on the TV or iPad. Having this connection with him by communication is so rewarding to me that it makes me forget about the fact he is yet to walk, but he WILL.

For the past 3 years on April 9th, I have recorded clips of what a typical day is like for Evan. This year was no different though I did not capture nearly as much footage as the years past (I figured everyone pretty much got the idea about skin care which hasn't nor will change, for life). But at least I remembered. And today you can see Evan's growth over the past few years. Evan has always been on his own growth and developmental pattern. He has always made itty bitty steps in regards to milestones. (Also keeping in mind that he was the most premature of any other Harlequin that I know of). Many parents get wrapped up about when their child will reach these traditional milestones. And some parents with a special needs child wonder why they haven't met them or wonder when or if they ever will. I am well over that stage and Ill take anything he'll give me! It's obvious that Evan is going to do what Evan is going to do. And I am very content with that now. What is MOST important to me is that my child is happy. And boy is he one happy camper! Enjoy this year's "A Day in the Life"!

2014's Video

2013's Video

2012's Video

 

Thank You! Thank You!

I am so excited to be able to send in our donations to FIRST! Thanks to all of you, we are sending 

 $1,141

To FIRST in honor of Ichthyosis Awareness Month!

It is quite an amazing feeling to have so many people in our lives who are so caring and gracious. I appreciate everyone supporting my boy and a foundation that will help better his further and the future of many others' lives. It's good to know that there are people who are willing to help a foundation in need. There are so many good souls out there! :-)

Now don't forget to rock out your shirt during the month of May! Take pictures and send them to me at dede583@hotmail.com or post them using the hashtag #EvansFundraiser on Facebook or Instagram. I'd love to see everyone sporting their Evan FIRST shirts! Thank you for helping to raise awareness for Ichthyosis!!

Evan's Ichthyosis Awareness Month "selfie"

Some friends at Evan's school helping to raise awareness!!!!

#EvansFundraiser