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Tuesday, August 28, 2012

EB related post

For those that don't follow my EB Blog, I did a post over there tonight.

Monday, August 13, 2012

35 random facts

a little birthday related post:)  35 random facts/tid bits about me!

1- the number of rings I wear each day.
2- the number of musical instruments I played in high school (flute and tuba)
3- the # of baby teeth that still reside in my mouth
4.1 yrs is the total length of time I have been pregnant in my life!
5-  the number of concerts I have been too.
6- # of kids I have ( 4 on earth, 2 in Heaven)
7- the number of hours I spend each week pre-cutting Joey's bandages
8- the # of round trip plane rides I have taken during my life
9- how long Joe and I were engaged before we got married and we got married on the 9th day of December!
10- how old my oldest child will be this yr.
11-the number of miles I walk each Sunday when I am at work
12- the number of yrs I have been married come this December
13- the number of states I have visited
14- how many traffic light I go through between home and work
15- the number of hrs it took to fly to Italy 15 yrs ago
16- the # of year since I graduated from High School
17- the number of miles round trip I drive to work each day
18- the number of yrs I have worked for my current employer (as of October)
19- how old I was my freshman year of collage
20- celebrated this birthday in San Diego
21- was the best birthday EVER:) (not so much for the # it was but for people who celebrated with me)
22- how old I was when I got engaged
23- how old I was when I got married
24- the number of hours I work each week at my part time job
25- the age I had my first child
26- the number of years Elizabeth and I have been friends
27- was how old when I went through my first hurricane (on my birthday no less)
28- about how many emails I get each day
29- the number of yrs I have known my friend Shauna
30- is the # of minutes it takes me to fall sleep each night (on average)
31- about how many loads of laundry I do in a month
32- I spent this birthday in the hospital
33- the number of times each day I say the phrase "inside voice please"
34- the number of times each day I saw, "stop bothering your sister!"
35- the number of candles on my cake this yr!

:-)

Wednesday, August 8, 2012

Those with EB in need

We are fortunate that our health insurance covers most of Sami and Joey's medical needs.  It doesn't cover everything but it covers the important things!  Unfortunately others with EB aren't so lucky



Meet Cassie



She is a 15 yr old young women who has severe recessive dystrophic EB.  She and her family lives in Louisiana.   Her parent Logan is a single parent to Cassie and her brother Walt whom they adopted when he was a toddler.  Walt has EB too.  Logan is unable to work because caring for his children is a full time job.  They are currently facing unexpected (and costly) repairs to their only van.  He is unable to take Walt to school or Cassie to the doctors without a working van that accommodates Cassie's wheelchair.  Please take a moment to read their story and if you are able, help them financially or just by sharing their story.  You can read more about this awesome family here.




Meet Omayra:




She is a twenty something year old women with recessive dystrophic EB.  She lives here in Florida (not too far for us in fact) but the day she turned 21, Florida Medicaid cut her off from the doctors she needs to see and the bandages she need to protect and help heal her wounds for no other reason than because she was over the age of 21.  You can hear her story here and learn how you can help.

Tuesday, August 7, 2012

Product Review: UV Skinzs

A couple of months ago, the EB organization, DebRA, had a weekly giveaway on their Facebook page and my entry won!  I won a swim suit from the Company UV Skinzs!  

Here is a little bit about the company per their web site: " UV Skinz offers fun and fashionable protective sunwear for infants, kids and adults. UV Skinz’ UPF 50+ sun protection clothing blocks out 98% of the sun’s harmful UVA and UVB rays, giving outdoor enthusiasts the peace of mind to live and play protected from the sun. Wearing UV Skinz is a slip-on-and-go, earth-friendly alternative to large amounts of topical sunscreens that are absorbed into the skin. UV Skinz provides all day carefree sun protection with no reapplication necessary. Wearing UV protective clothing is an important step in preventing sunburns, premature aging of the skin and skin cancer."

Another EB Family also recommended them so I was excited to have won one!  Since Joey doesn't swim, I opted to get Sami one instead.  She picked out this one (pink of course!)  



It arrived a couple of weeks later and she has used it a few times since.  She really likes it!!!  Its easy to put on and comfortable to wear.  She also even wears the hat (much to my surprise!!)  She is a BIG fan of two-piece suits and likes how the shirt covers up the long scar on her back so people don't ask her about it!  Overall I am very, very happy with this suit and would HIGHLY recommend it not just for other kids with EB but for anyone looking for a high quality suit with UV protection! 

Monday, August 6, 2012

It's that time of year!

Back to school shopping that is!  After only getting SOME school clothes and supplies this past (tax free) weekend, my first thought it 'now I know why large families home school their kids'!  So they don't have to spend a small fortune on school supplies!  But then I realized they actually probably spend more since they have to buy all the books/material as well.  But going back to school is expensive when you times it by 3!!!!  But over all we didn't do too bad for all the things we actually got.

School starts in 2 weeks and unfortunately the girls aren't NEARLY as excited as I am about that day:)  But things will just get crazier; more taking and pick up from school, some days at 3 different times as well.  Trying to mentally plan in my head when I can get Joey's bandages changed and when he can get a nap w/o me having to wake him to go pick up someone!  Its going to be challenging to say the least.  But I am sure we'll figure it out!  Maybe I can actually get the house more organized while they are at school too:)

Some quick updates on the kids:

Sami- busy planning her birthday party!!!  she is NOT happy school is starting up soon; she won't be able to sleep until 11am every day!

Summer- been getting LOTS of visits from the tooth fairy!!  She is excited for school to start but just so she can see her friends and start going to girl scouts again.  

Grace-is VERY excited to be starting school this yr, but is still VERY emotionally immature and I worry about how she is going to handle school w/o out having her dozen or so emotional breakdowns each day:/

Joey- is WALKING all over the place now! He can get from a sitting position to a standing position better and better each day.  He loves to follow his sisters around the house and get into as much as possible:)  He loves to eat yogurt and gold fish crackers and peaches.  He also loves to be outside.   His skin is a mess right now; we recently started a new reflux medicine and is possibly having an allergic reaction to it:(  hopefully when the rash clears up he'll start feeling better.  

Here is one picture for you all.  I will be doing another post about where it was taken sometimes this week (hopefully)  I have 4-5 more posts I hope to have written and posted within the next week.  Two are reviews (one product review and one book review) so check back for those!! 


Sunday, August 5, 2012

250th Post!!

This is a must read post!  Not only is this my 250th blog post!!!! (YIPPIE!!)

It is also the one where I announce a fundraiser I am hosting this month!

Okay, here are the details: In honor of my upcoming birthday I will be donating AT LEAST 10% of my profits from sales thru my ON-LINE Avon store for the ENTIRE month of August to The Butterfly Fund!! They are a great organization out in California that is dedicated to helping those with EB.  I had the honor of meeting Laurie and Steve Sterner recently and I wanted to do a little something to help them out and make their goal of helping those with EB a little easier!

Please use the code BUTTERFLY_35 at check out so your sales will go toward the event! http://sdenslaw.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=342838

My goal it to be able to donate  at least $100 to The Butterfly Fund:) Even if you have a regular Avon rep please consider shopping my store this month and help support The Butterfly Fund!


Don't forget to use the code BUTTERFLY_35 at check out so your purchase goes toward this fundraiser!!!  

Thursday, August 2, 2012