days 18, 19 and 20

day 18

The upside to needing lots of extra calories... Being able to eat almost anything you want I wouldn't mind that!

 

day 19
The odds of having a child born with EHK is 1:300,000

 

day 20
Those affected with EHK have a 50% chance of passing it on to their children.

 

Day 17

day 17
Wyatt gets a bleach bath every other week to kill all of the bacteria on his skin. This helps prevent him from getting skin infections. Those are scary!



31 days of Ichthyosis - days 1-16

In celebration of Ichthyosis awareness month I have been doing a 31 days of Ichthyosis picture series on facebook.  It's about time I shared it here too :)  Here are days 1-16...

 

31 days of Ichthyosis

 

 day 2

Wyatts little hand, it looks so good!

day 3
Wyatt with his great grandma pope

day 4
I love morning snuggles 

day 5
Ran 13.1 miles to raise money and awareness for Ichthyosis

 

day 6
Fun fact: When Wyatt eats, his skin always gets stained the color of the food he's eating

 

 day 7
Water is like medicine for Wyatt's skin. Right now his daily bath is about 30 minutes long followed by a generous coating of aquaphor to help hydrate his skin

 

 day 8
Thanks to Eucerin calming cream, Wyatt has some gorgeous little legs he gets this lotion applied every 3 hours daily

 

day 9

De-scaling Wyatt's scalp is a daily activity to get hair that looks this good.

 

 he's SO handsome!

 

 

 day 10
I'm grateful for our handicap placard on days like today. Wyatt can't sweat so he overheats very easily and being able to park close and get inside fast helps to prevent this.

day 11
Washing aquaphor out of clothes = aquaphor in pipes = clogged pipes = water everywhere.

Now to find a good plumber...

day 12
We keep the temperature inside our house at 70 degrees for this little guy. I don't want to know what our electric bill is going to be this summer!

 

day 13
This momma is officially a support volunteer for families affected by Ichthyosis! I can't wait to pay it forward

 

day 14
One of the things that helps to keep Wyatt's skin hydrated is, we have a humidifier constantly running to keep the humidity level between 50-60% in our house.

 

day 15
Wyatt's personal pharmacy

 

day 16
Wyatt's skin grows approximately 300% faster than average skin. This means he burns a LOT more calories, which requires him to have a high calorie diet. This kid is always hungry!

 



The half marathon

 Success!

On Sunday, Jared and I drove out to Newport and ran our very first half marathon.  Our goal for raising awareness will never be over, but our first half is!  The first 6.5 miles were run without any hiccups.  Shortly after I hurt my knee and at mile 7.5 it felt like someone was trying to pry off my right knee cap.  Jared and I walked the last 5.5 miles and completed the marathon in 3 hours and 22 minutes.  If I hadn't hurt myself we would have finished in just over 2.5 hours.  I'm disappointed that I didn't complete my goal time, but I'm so very proud of myself that I FINISHED!

So far we have raised $1877 to donate to ichthyosis research.

Thank you so so so much to those that have donated to our cause!

I'll be ending the fundraiser in about a week, so there's still time to donate!

It only takes a minute and $5 adds up fast :)

Thanks for your support!

Ichthyosis awareness

1 year and 5 days ago I had an 11 day old preemie in the NICU at Children's Hospital Los Angeles.  I was anxiously awaiting the results of a skin biopsy that would explain why he was so raw and blistery everywhere.  I wasn't supposed to get the news for another week, but the preliminary biopsy report came back early.  My son was diagnosed as having epidermolytic hyperkeratosis, or EHK for short.  

With a diagnosis in hand, but no real information about it, I started researching.... and researching... and researching.  It was surprisingly difficult to find good information about EHK.  After a few days of researching and reaching out for help on a few different websites, I received my first contact with another mom who had an affected son.  That day was one year ago today.  What an appropriate way to start ichthyosis awareness month!  Through her and then many others, I learned about ichthyosis and that there are actually many different types.  Jared and I were able to attend a conference and learn even more.  After one very long year I feel like an expert on EHK and I've now been in the position where I have been able to give advice to other parents.  I feel qualified enough to share what works for us, with others. 

Wyatt has dry, scaly skin that grows about 300% faster than 'normal' skin.  It is very fragile and blisters easily.  He doesn't sweat so he overheats easily.  Because his skin grows so quickly he requires about 50% more calories than most children.  Between long baths, frequent lotioning, and descaling, his skin care totals up to about 1.5 hours a day

I feel lucky to have been blessed with this little guy.  Through him I have learned and grown so much.  I have met people that are truly inspiring.  Through him, I have made a new family.

May is ichthyosis awareness month.

When you see someone that looks a little different, please don't stare.  Please don't be afraid.  And please don't be afraid to ask.  When you ask, it gives people like me the opportunity to teach you about something new.  When you ask, it give you the opportunity to learn and to be aware.

We are asking all of our family and friends to please consider making a donation to FIRST.  Just $5 or $10 helps make a big difference.  By helping FIRST you're helping families like mine, you're helping to raise awareness, and you're helping to find a cure.

If you'd like to donate, click on the paypal link towards the top right of the page under Running for Research Fundraiser.