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Monday, October 26, 2009

National EB Awareness Week


 In honor of National EB Awareness week, I would like to pay tribute to all those infants, children and adults who lost their brave battle to EB and are now flying high in the sky with the butterflies!  Below is a list of EB Angels I either know, have talked (or emailed) to their parents, and  came across on line through the years.  The list was MUCH longer than I thought (aprox. 226 names) and it has taken me almost 2 days to write this post!


 In loving memory of......



Braiden B.
Craig W.
Emberly P.
Gabriel V.
Gage M.
Landon S.
Lee L.
Lucy N.
Addison J.
Alex H.
Brandy K.
Brida H.
Bursa
Derek J.
Devin R.
Emma M.
Jacob J.
Jacob L.
James U.
Kara B.
Kaylee
Le Andre S.
Matthew
Megan H.
Mia H.
Owen D.
Ryland B.
Sarah M.
Andrew C.
Angel J.
Anthony M.
Caleb
Caleb E.
Corey C.
Emmaylou C.
Estefania
Grant T.
James L.
Jaylin P.
Justin C.
Kristin
Luis C.
Macey-Kate M.
Max B.
Nathaniel M.
Nichols D.
Robert F.
Sania A.
Xantha M.
Zach O.
Anthony U.
Austin J.
Debbie
Eric H.
Gavin F.
Joseph M.
Kate D.
Kelly D.
Kermitt T.
Maximus B.
Nicholas M.
Noel M.
Tille
Alma E.
Angelica T.
Elliott S.
Erum K.
Ethan
Josh
Justin L.
Kael F.
Kevin K.
Malachi B.
Kurt M.
Margaret O.
Michael T.
Montanna R.
Sadie H.
Taliah
Anthony T.
Courtney A.
Baby Girl R.
Katie
Kayla
Rebecca S.
Andrew A.
Andy B.
Baby Boy H.
Brittany W.
Eduardo P.
Brittany H.
Katia S.
Kobe T.
Laney H.
Marianda M.
Brittany B.
Daniel S.
Dylan
Emma P.
Jamia F.
Kelly M.
Nyanjau M.
Quentin
Sarah C.
Sophia L.
Thomas S.
Tricia H.
Witt
Aaron F.
Adrain O.
Amber F.
Brogan A.
Donte B.
Ed K.
Baby Girl F.
Jack C.
Justin C.
Kiara F.
Nicholas S.
Olivia H.
Carlos F.
Caylin S.
Kaitlin P.
Kelly D.
Lisa V.
Travis S.
Trevor S.
Kenneth D.
Dana M.
Courntey S.
Crystal G.
Jaslyn
Madeline F.
Mallory H.
Michael S.
Ryan M.
Samantha
Sara N.
Shana
Susie T.
Taylor W.
Tony P.
Coleby M.
Jamie J.
Jennifer J.
Logan B.
Matthew A.
April S.
Cynthia R.
Landon T.
Andrew G.
Gary G.
Adam S.
Alex M.
Matt
Allison S.
Alex Z.
Ben G.
Gus David M.
Susan P.
Tyler J.
Joyce S.
Christine A.
Lauren J.
Ryan M.
Joan B.
Kalie D.
Natalie D.
Paul D.
Chuck A.
Jennifer J.
Baby Boy
Tyshera W.
Adam W.
John R.
Michael H.
Adrian I.
Simon E.
Debra H.
Irene C.
Christina C.
Avin B.
Denise G.
Jeffery G.
Michelle C.
Sean P.
Caroline F.
Mike
Jay
Katie
Kerry W.
Michael W.









Sunday, October 25, 2009

EB Awareness Week

Today marks the first day of National EB Awareness Week!  There will be lots of events happening all over the country this week in honor of it. Check out my web site to learn more about the events.  While we aren't doing anything publicly here, I do have something to share later in the week. 



Friday, October 23, 2009

EB Event: Bingo for Evan

What: Longaberger Bingo for Evan who has Junctional Epidermolysis Bullosa

When: Sunday November 1, 2009
 
Place: Covington Moose Lodge
414 Moose Park Rd
Covington, VA 24426
(540) 962-1042
 
Time: 2:00pm; Door opens at 1:00
 
20 games with lots of door prizes food available
 
This fundraiser is being done to help defray medical cost relating his disease

Wednesday, October 21, 2009

A crazy, crazy day...

Its 11pm and the people across the street are blaring loud Hispanic music.... anyways what a day this was.  This morning Sami and Summer had dentist appointment with a new dentist.  Our old one was almost an hours drive away and didn't accept any dental insurance.  This one day is much closer (10 minutes) and accepts dental insurance.  And he had worked on EB kids in medical school before:)  The girls did fine.  No cavities:)  Sami had x-rays taken and we learned she is missing adult teeth like I am (I am missing 10 adult teeth plus all 4 wisdom teeth- so 14 total)  Sami is just missing 5.  All 4 wisdom teeth which isn't all that bad, but the 5th one is one of the top teeth.  One next to the right front tooth.  We'll just have to wait and see what happens as she loses the rest of her baby teeth and gets her adult teeth.

Later in the day I had a dentist appointment and it went better than usually in terms of the amount of damage my mouth sustained from the cleaning.  Though 11 hours later my mouth still hurts.

On my way to work I had to stop and get more ribbon for my bows.  Tomorrow I will be mailing out my 4th order this week!

At Walmart I saw a lady pushing a large (golden retriever large) black dog around in a shopping cart.  I have seen people with little dogs in the store, but never one this big.  Not sure how no one noticed her bring it in?!? 

Next I went to Michael's to get more bow clips, but they were still out:(

I stopped by McDonalds to get dinner on my way to work.  As I was leaving I saw a complete (end to end) double rainbow:)  It was one of the brightest rainbows I have ever seen in the sky.  Sorry no picture.  Didn't think it was safe to take with picture with my cell phone while driving;)

Once I got to work, I saw a lady putting her purchases in the back of her SUV from the shopping cart she had (key part of story);  Shut the back door, went and got into the drivers side.  5 seconds later, CRASH- CRUNCH, she ran over the cart she forgot to move after she was done with it!!  She wasn't very happy as you can imagine.

Then I went inside put my purse and dinner on my desk, went to punch in and get my signs. However, there were no signs.  I looked high and low for almost an hour for them.  They usually arrive on Wednesdays.  No one knows if they came and it was too late to track them.  So I went home.  That puts me behind for the week and with no baby sitter, I can't go in early tomorrow or Friday.  I tried one person, but she has to work.  If they arrive tomorrow I will be ok.  It will be tough, but I should be done in time.  But if they don't arrive till Friday, then I am screwed.

Hopefully tomorrow is a better day and that I can find more bow clips so I can fill more orders!

Sunday, October 18, 2009

New Bows...

Head on over to Butterfly Bows to check out the 
newest bows they have to offer!

New B

Thursday, October 15, 2009

October 15 is National Pregnancy and Infant Loss Remembrance Day

History of this day:

OFFICIAL WORLDWIDE website of October 15th, Pregnancy and Infant Loss Remembrance Day


October 15th was created to provide support, education and awareness for those who are suffering or may know someone who has suffered a miscarriage, an ectopic pregnancy, a still birth, or the loss of an infant. We hope that we can help you by giving you and all of the other parents, grandparents, siblings, relatives, and friends a special day of remembrance. This special day of Pregnancy and Infant Loss Remembrance is October 15th of every year.

Pregnancy and Infant Loss Remembrance Day is to promote Support, Education and Awareness for grieving parents nationwide (and worldwide).

Too many families grieve in silence, sometimes never coming to terms with their loss. Our goal is to help others relate to our loss, know what to say, do or not say, not do and to help families live with their loss, not "get over" their loss.

In October 1988, President Ronald Reagan Proclaimed
October as National Pregnancy and Infant Loss
Awareness Month. "When a child loses his parent, they
are called an orphan. When a spouse loses her or his
partner, they are called a widow or widower. When
parents lose their child, there isn't a word to describe
them. This month recognizes the loss so many parents
experience across the United States and around the
world. It is also meant to inform and provide resources
for parents who have lost children due to miscarriage,
ectopic pregnancy, molar pregnancy, stillbirths, birth
defects, SIDS, and other causes."
Blue Mountain Arts, www.1.bluemountainarts.com

Robyn Bear, founder of www.october15th.com, and founder of October 15th, Pregnancy and Infant Loss Remembrance Day envisioned a day when all grieving parents could come together and be surrounded by love and support from their friends and families, a day where the community could better understand their pain and learn how to reach out to those grieving. This would be a day to reflect on the loss yet embrace the love. While our babies’ lives where so brief, they were also very meaningful. Yet, there was not a time to talk about them. Our society seemed to forget or perhaps, simply didn't know how to reach out. Since October had been proclaimed "Awareness Month", she chose a day, in the middle of the month to become, "Pregnancy and Infant Loss Remembrance Day".

We are asking everyone in all times zones, worldwide, to join us in a candle lighting ceremony at 7pm on October 15th. For more information, please visit

http://www.october15th.com

Our Mission Statement:

To diligently work with local, state and national leaders to obtain a National Day of Remembrance recognizing the need for community education and awareness when a family loses a child to miscarriage, stillbirth, and/or neonatal death. While promoting the need for openness,
understanding and compassion during a family's time of grief and most importantly, allowing those who wish, to remember these children who we now hold dear.

Goals of Pregnancy and Infant Loss Remembrance Day:

To have information and support available to families who suffer from pregnancy and infant loss, to help them cope.

• To inform and educate the public about pregnancy and infant loss so they can better learn how to respond with
compassion to affected families.

• To enable professionals, physicians, clergy, emergency medical technicians, funeral directors, police officers, public health nurses, and employers, to better serve families if they have special training and better knowledge of pregnancy and infant loss.

• To set aside a day to remember all pregnancies and infants lost in order to heal and be comforted in a time of pain and heartache, and to have hope for the future.
 

 

Wednesday, October 14, 2009

Introducing: Butterfly Bows!

I would like to invite everyone to check out my new business venture!  Butterfly Bows: Handmade and Customized Bows.  I have many colors, styles and themes, including Hannah Montana, High School Musical, and Hello Kitty!  If you looking for a certain color, print, pattern or theme, just let me know and if I can find it I can make it!

I have a giveaway going on now through Saturday night, so head on over and check it out! 

Bows make perfect gifts for birthdays and holidays! (Christmas is just  72 days from today!)


In addition, 10% of the sales from the bows will go to help EB Families!  Check get something cute while helping out a good cause at the same time!

Monday, October 12, 2009

Monday Night Dinner

I think for the first time I am trying a spur of the moment new recipe for dinner!  Surprisingly I had all the ingredients in the house! (that would be first too!)

Easy Chicken & Cheese Enchiladas

1 can of Cream of Chicken Soup
1/2 cup sour cream
1 cup Picante Sauce
2 tsp chili powder
2 cups chopped cooked chicken
1/2 cup shredded Monterey Jack Cheese
6 flour (10") tortillas (warmed)
1 small tomato
1 green onion sliced

1. Stir in soup, sour cream, picante sauce and chili power in a medium bowl

2. stir in 1 cup of the above mixture with the chicken and cheese in a large bowl.

3. Divide up the chicken mixture among the tortillas. Roll up tortilla and place seam side up in a shallow baking dish.  Pour remaining mixture over the filled tortillas.  Cover and cook at 350 degrees for 40 minutes.   Top with tomato and onion. (we skipped that part)

For us I cut the recipe in half since there are just two of us who would eat enchiladas.  And we only had 6" tortilla's in the house, so I used those, but even when halved, it still made a lot of enchiladas! 

And because I was being bothered distracted by the kids, I learned that if you cook it covered at 400 for 20 minutes, then uncovered at 350 for 15 minutes, top with more shredded cheese and bake for an additional 5 minutes, it turns out just fine too:)


Not Me!/Not my Child! Monday

Gosh is it Monday already??  Apparently so because it's NOT ME! MONDAY! And Not My Child! Monday! Courtesy of MckMama




I did NOT let my almost 2 year bring a small bucket of sand into the house so she would play by herself and leave me a lone so I could work on my web site. nope not me!



I did NOT get another gray hair when I found my 3 year old standing on a chair in the bathroom trying to wash her FEET in the bathroom sink!  nope not my child!

Thursday, October 8, 2009

Twitter

you can now follow me on Twitter here!  check out my Twitter box on the lower left side of the page.

Tuesday, October 6, 2009

1st Annual Tyler Fisher Spaghetti Dinner & Auction

Another EB Awareness Event:


1st Annual Tyler Fisher Spaghetti Dinner & Auction



Wings for Layla

(October 25-31 is National EB Awareness Week.  I'll be posting info about events happening all over the country happening that week (or close to that week).

First up is:

Wings for Layla!














Layla was born in January 2009 with Epidermolysis Bullosa Simplex-Dowling Meara (the same type Sami, Garrett and I were born with).  They are having a fundraiser walk to raise money for EB.


When: Sunday October 25, 2009
Time: 11am-4pm
Location: Sheboygan North High School Field House and Commons
Sheboygan, WI
Details of the event can be found here 

Monday, October 5, 2009

Not Me! Monday

I got this idea from MckMama...

It's a Not me! Monday..

I DID NOT let me kids dip their chicken nuggets and carrot sticks into vanilla ice cream for lunch just so they'd eat it...nope not me!

I also DID NOT let my almost 2 year old run around with no diaper on and then got upset with her when she pooped on the floor and was very proud of it!  Nope not me!

Okay your turn.....what are your funny Not me! Monday stories??












Friday, October 2, 2009

Baking frenzy

Apparently I am on a baking frenzy today!




Banana Bread to use up the over rip bananas with this recipe 





Cheesecake Brownies (from Pillsbury) made in the muffin pans instead of a cake pan 



And my goal is to make lasagna for dinner!

Thursday, October 1, 2009

Perfect 1st day of October dinner

1- 2lb roast
3 cups of cut up potatoes
2 cups of cut up carrots
1/2 cup diced celery
1/4 cup of diced green peppers
1 tablespoon diced onion
1 package of McCormick Pot Roast Seasoning

enough water to cover the meat and veggies.  I had to use 5 cups because my roast is long and skinny instead of fat and chubby!  Cook on high for 4-5 hours or low for 8-9.  Perfect for the first day of October, even though it doesn't really feel like fall here.