Step2 Giveaway for Ichthyosis Awareness Month 2015! YOU PICK!

We’re coming upon the close of Ichthyosis Awareness Month this May!

If you’re new here, you may be asking “what is this word I have never heard of and can’t pronounce?”

Ichthyosis (ick-thee-oh-sis) is a rare skin disorder, and our daughter Brenna was born with a severe type called Harlequin. It is a life-long condition that affects her every single day, and we’re raising money for the Foundation for Ichthyosis and Related Skin Types (also known as FIRST) to help promote public education, events, and most importantly, research!

And what better way to help raise money for such a wonderful cause than to have a giveaway!?
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Step2 has very generously jumped on board with our fundraising campaign and they are offering an AMAZING prize today of any item chosen by the winner up to $200! Now, to be clear, you do not have to donate to our fundraiser to be able to enter the giveaway… but I’d definitely like to encourage you to read more about our fundraiser and consider contributing to this very worthy cause that helps families like ours.

We are asking for a very small $3 donation to celebrate our daughter being THREE! We have set a goal of $3,000…And we are SO CLOSE to meeting that goal!! Please go here to read more and to donate securely online.IAM_FB_Badges2f

A HUGE THANK YOU to all who have very generously given already!! You are making such a difference in the lives of family affected by ichthyosis. And another thank you to Step2 for joining our cause and supporting FIRST!

Will you help us reach $3,000 with your $3 donation? This giveaway runs for (of course) THREE days!

To enter to win a $200 Step2 item of your choosing, simply enter through the Rafflecopter tool below:

a Rafflecopter giveaway

Not Taking Anything For Granted: a guest post by DeDe Fasciano

If you’ve been following for a while, you’ll remember DeDe and her family. DeDe, her son Evan and her mom came to visit us when Brenna was just 11 months old – and it was so exciting meeting someone in person who also had Brenna’s rare condition! We also got to hang out again last summer at the FIRST family conference, along with several other kids with Harlequin Ichthyosis! DeDe gave birth last year to their second child, Vincenzo, who is not affected with HI, and Evan has become such an adorable big brother. Today, DeDe is sharing about her own experiences as a mother caring for a child with Harlequin Ichthyosis…

It’s hard to believe that ichthyosis has been a part of my life for almost 5 years. I honestly do not remember what life was like before it. Mainly because I cannot imagine life without Evan. And with that comes the ichthyosis territory. While, during the moment, it may have seemed like taking care of Evan had been a sluggish process, it is hard to believe we will be celebrating his 5th birthday next month and he will be going to Kindergarten next year.

To me, caring for a child with ichthyosis has felt like I am living a groundhog day. A happy groundhog day thankfully but still includes the “Lather, Rinse, Repeat” or, in ichthyosis terms, “Bathe, Exfoliate, Moisturize, Moisturize, Moisturize, Repeat”. I also think this feeling of groundhog’s day is connected to Evan’s slow development. For the first 2-3 years, Evan did not hit any major gross motor milestones. Not much changed in his motor world until after he turned 3 and was able to sit independently, 90% of the time. And it was not until this past summer where he finally gained some independence, army crawling around the house.

It has been a rewarding experience being Evan’s mother, but the pressure of caring for Evan and his skin can be overwhelming. It is something that has become second nature. Most of the time I don’t even think twice about the work that is needed to care for him. I guess it’s a mother thing, an ichthyosis parent thing.

While there are times where you could break down and cry about what your child has to go through, your strength grabs hold and pulls you together to get the job done. And for me, it’s a lot easier when that smiling boy looks at me with those beautiful eyes of love. I have been so fortunate to be able to stay home and care for Evan. And Evan has been quite the trooper for all he has to go through. He really is the happiest child I have ever met.IMG_2833

When Evan was born, we were lucky to have experts in ichthyosis care for him. Not only care for him but also diagnose him prior to birth. They were ready for a Harlequin baby and had a care plan in place before he entered this world. We were never told that he was going to die, even though the chances were high. Questions were answered about his condition, care and future. That is something I don’t think many other ichthyosis parents could say.

Luckily, for other families, FIRST is there to support them by providing essential information and medical advice. They are there to connect other families, educate the public and fund research for better treatments and hopefully, one day, a cure.

We became members with FIRST (Foundation for Ichthyosis and Related Skin Types) right after Evan was born. Our dermatologist, who is a member and advocate for this foundation, told us about it. It was a relief to know there was this community to connect with. They provided a resource of information that we were able to share with our family and friends.

The first year of Evan’s life was consumed with skin care, doctor appointments and therapies. In the beginning, I did not reach out to other families in the community. I was content with the care plan set in place for Evan, which was guided by the experts but knew that when I did need help, the community was there.

About 3 years ago, I saw a blog post shared on FIRST’s Facebook page. It was about a new baby that was born with Harlequin Ichthyosis, Brenna. It was then I realized that even though at that time, I may not have needed help from other members and families, other families may have needed my help from my experiences caring for Harlequin Ichthyosis. I connected with Courtney while Brenna was still in the NICU and sent her a care package of necessities to use when she came home. We even made a trip out to meet and visit them a few years ago. I feel a special connection with Brenna and her family. The feelings Courtney and her family were experiencing when she was born was something I had just gone through myself. After reaching out to Courtney, I connected with many other families in the community and am very thankful for having all of them in my life and Evan’s life.FullSizeRender-1

Sometimes Ichthyosis may be tough to care for, but it makes me tougher. Ichthyosis makes me appreciate the finer things in life and prevents me from taking the little joys in life for granted. Sometimes it causes worry or uncertainty but is overpowered by uniqueness and strength. I feel fortunate to be in a community with others who are so dedicated to raise awareness to make the lives of those affected easier. To all of those who advocate for this disorder to help raise awareness, I thank you.IMG_1073

 Follow DeDe’s family on her blog, or see cute pictures of the boys on their Facebook page.

Day in Our Life: afternoon and evening

In honor of Ichthyosis Awareness Month, I’m showing one of our days through photos (and linking to some videos on Instagram) to give you a visual of our life with Harlequin Ichthyosis. I wrote about our morning here, and bath time here… and today, we’re picking up on the afternoon and evening…

After lunch, we all need some Quiet Time. Before Quiet Time, I apply Aquaphor all over Brenna’s body again and change her clothes. Then we read a book, and she goes down for nap. (She sleeps 99.8% of the time, but prefers calling it Quiet Time over Nap Time :) )cIMG_9531

Connor has his own Quiet Time in his room, where he typically chooses to play with his superheroes. He gave up naps around age 3, which is when we moved to “Quiet Time.” I usually don’t set a time limit for him because he’s pretty consistent about staying in his room and playing or looking at books for close to an hour. cIMG_9539

I use Quiet Time for all kinds of things, but usually to do chores and computer work. And I’ll usually spend part of it reading or playing one-on-one with Connor. Today, I throw a load of blankets in the washer, switch Brenna’s clothes to the dryer from her morning wash, and respond to more emails and schedule some social media posts. I also start getting dinner ready by chopping onions and boiling noodles. I then decide to give myself a little break and run a hot bath around 3:00. I hit the water and hear Brenna call out – argh! She is content for about 20 minutes while I read in the bath, which is all the break that I need to get re-energized!

Brenna is up from nap and I change her into a new outfit – no Aquaphor this time. We need to let her skin dry out a bit for bath time, so that her skin can soak up the water and we can rub the extra layers off. I pack some snacks, and we decide to head off to the park!

Brenna’s eating her pepperoni :)cIMG_9541

We make a quick stop by the library to drop off some books that are due… and Connor is proud to get to go in and return them to the librarian’s desk all by himself.cIMG_9544

I’m grateful for a beautiful day outside! We don’t take perfect weather for granted anymore since Brenna can’t sweat and doesn’t tolerate extreme temperatures well, so when it’s 75 degrees, we’re outside!
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Selfie at the park ;) 

We head home from the park around 5:00 and Daddy gets home about 20 minutes later. I help him start Brenna’s bath (his turn tonight, since I did the night before! We try to trade off whenever possible), and he takes over bath duty.

While Evan and Brenna are scrubbing and soaking, Connor and I take off for the grocery store. I’m glad to get to spend some one-on-one time with my buddy, even if it’s just grocery shopping.

Back at home, we unload the groceries, and it’s perfect timing – Brenna is finished with bath and ready to get her ears cleaned out.

We clean the extra skin out of Brenna’s ears about every other day. Her ENT gave me a special tool, and I (very carefully) scoop out the extra skin out of her ear folds and ear canals. She loves how it feels, and we notice a big difference in her hearing. And this is the aftermath.cIMG_8900

Brenna is much happier with moisturized skin, and she wants to don her Minnie Mouse slippers!cIMG_9587

Dinner is always pretty simple, but it’s almost always homemade and we almost always sit down together as a family – that’s something that is really important to both me and Evan. Tonight, we’re having spaghetti, garlic bread, salads and raspberries.

I will say that dinner time can sometimes be a big struggle with the kids… for the love, JUST TRY A BITE. Without gagging about it! We’re working on it :)cIMG_9594

After dinner, the kids want to play one of our favorite games: the Sneaky, Snacky Squirrel Game. (I LOVE this game – it moves quickly, it’s really cute and it’s simple enough to understand that Brenna can fully participate by herself.)cIMG_9597

Hop on pop?cIMG_9601

And finally, it’s bed time! Aquaphor starts off with a belly tickle :)cIMG_9610

We keep the Aquaphor in a wipes warmer so it’s more comfortable to put on…cIMG_9520

 

We wear medical gloves to 1) reduce infection risk and 2) try to keep it from getting all over ourselves. I take a big scoop out of the jar (in my left hand) and use that glop to apply to her body so I’m not “double-dipping” in the jar. Again, with reducing infection risk.
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Brenna then shuffles down the hallway to Connor’s room, where he has changed into his PJs, brushed his teeth, etc., and everyone is ready for a bed time book.

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While Daddy reads, I take a time out to play on my phone. It’s my mental health break :) Then I typically put Brenna to bed because she’s high maintenance and demands Mommy.

After the kids are down for the night, I use some of the noodles I made earlier to whip up a few batches of cheesy chicken spaghetti for the freezer (the big one for my sister-in-law’s family, and I split another serving into 2 8×8 dishes so we can have 2 dinners out of it.)
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Evan and I land on the couch together in front of a show that we’re half-watching as we talk and catch up from the day. We head up to bed around 9:45. And we always hope for a good night’s sleep, but it rarely happens. Brenna is usually up at least once, scratching and itchy – but sometimes it’s all throughout the night. It can make for long, hard days sometimes, where all of us are tired and cranky, but usually we just power through.

I hope you enjoyed a glimpse into one of our days and the care that comes with Brenna’s condition. Of course, all days look different (and I didn’t show you the temper tantrums, but those happen too!) but this Tuesday that I shared was full – of activities, obligations, skin care and most of all, family and love.

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