it's auction time!!!

Hey y'all.

Just wanted to let you know that Katie is collecting items for Jonah's EB Auction this month. It will run February 28th - March 3rd, so if you were planning on donating, will you please contact Katie as soon as possible?

You can email her at jonahsebauction (at) gmail (dot) com.

The auction site is HERE if you would like more information. Katie posted more details there. And the Facebook page is HERE if you want to get sneak peeks, hints, teasers, and updates as we get closer.

Let's make this year amazing.

Thanks from the bottom of our hearts!
Patrice and Katie

THUNDERCATS ARE GO

THUNDERCATS ARE GOOOOOOOOOOOO!

http://jonahsebauction.blogspot.com

auction items up!

Auction items are up for preview. No bidding until 8pm EST Friday night. But they are all up, so get to lookin'!

http://jonahsebauction.blogspot.com

HAVE FUN!

auction giveaway!!!

The auction page is something to see, in case you haven't visited in a while. Katie is putting up lots of sneak peeks, and we have over 160 items up for bid! So please, tell your friends! We are so thankful for so many items and we are so thankful for all the bidders. Wouldn't be much of an auction with no one to bid. All of you, donors and bidders, are so so so amazing. And remember, all proceeds go to DebRA for family advocacy and to fund research for a cure.

Katie has posted a special giveaway for those who help us get the word out. Will you go check it out? A fun way to get entered to win a $20 Target or Walmart card AND helps us advertise for the auction. Click HERE to find out how to get entered.

Jonah's auction starts in 8 days and 20ish hours! WOOHOO!

We appreciate you! Thank you so much!

AUCTION TIME!

Hey y'all!


So it's time to start planning the third annual Jonah's EB Auction to raise money for DebRA (for patient advocacy and to fund research for a cure.) The auction will run February 24th - February 27th.


Katie posted this last night on Jonah's EB Auction Facebook page:


"To the generous ladies and gentlemen out there interested in making a donation for this year's auction: please contact me at jonahsebauction(at)gmail(dot)com. I will be collecting donations throughout January to prepare for the THIRD annual auction (February 24-27). I'm SO excited to see what this year holds. :)


If you'd like to help, but aren't sure what kind of items we are looking for, gift cards are always great because they sell and they cost next to nothing to ship. If you make jewelry, sew, or are an otherwise crafty person, we'd love to include your items! If you're still unsure, just email me at the auction address (jonahsebauction@gmail.com)."


We're afraid the Facebook updates aren't showing up on people's news feeds, even if you've "liked" the page, due to some of Facebook's new "improvements." So if you aren't getting updates, try going to the FB page, and liking and commenting on some stuff, and hopefully that will make it start showing up in your feed again. Also, if you go to your feed and sort by most recent stories, it may show up that way. And if you haven't "liked" the auction Facebook page, make sure you do! That's where we get the quickest updates, most communication, and play fun games all leading up to the auction.


Also, you can follow the auction (Katie) on Twitter (@jonahsebauction) to get updates that way too. (There will be a giveaway in the future and being a Twitter follower gets you an automatic entry! More to come on that soon!)


I CANNOT WAIT!


(Oh, and you don't have to be crafty or own your own business to donate. You can donate gift cards to restaurants, gas cards, grocery cards, popular DVD's, new children's toys/clothes, really anything that is new and reasonable to ship.)


Once again, thank all of you from the bottom of my heart (and Katie's) for making this annual tradition one of the most fun and most meaningful experiences I've ever been a part of. 


LET'S DO THIS THING!

THUNDERCATS ARE GOOOOOOOO!

http://jonahsebauction.blogspot.com

cute photos and great news

One day last week, Jonah and I met up with our friends, The Smittys at the park. I don't remember what day it was, but it was BEAUTIFUL. They were sick, Jonah was sick, but we all just needed to get outside. Jonah had just started his steroids, so he was kind of hard to please, but it was still nice to get out of the house.


Did I mention the day was beautiful?

And I think we're all long overdue for an Anton update. Several pieces of good news - the non-profit in Anton's country that is advocating for him has convinced the hospital, for now, to keep him there. I truly believe that is a direct answer to prayers. For now, they can advocate for Sweet Anton there, and we can advocate for him at the feet of Jesus. It's a pretty huge honor, don't you think? 

We have raised over $2,000 through the Chip In button on Hope for Anton, but the total on his Reece's Rainbow page (which includes the Chip In donations) is OVER $10,000. We are doing this! Do you realize his Reece's Rainbow page went up on February 8th? We (and many others around the world) have raised over $10,000 in 15 days!!! Thank you from the bottom of my heart for your donations, your fundraisers, and for advocating for him. We have Thirty One, Tastefully Simple, Pampered Chef, and Avon Fundraisers going on, all to benefit Anton! And a new opportunity will be up first thing in the morning. Please take a look if you haven't. Also, I don't see us stopping any time soon, so please keep sending your ideas and suggestions. If we finish raising Anton's money, we'll just keep going for all the other equally deserving  kiddos out there. 

And in HUGE news, JONAH'S EB AUCTION STARTS TOMORROW NIGHT AT 8PM EST. 

Please check it out, bid, and help us raise money for DebRA. One of these days, EB will just be a distant memory. I can't wait!

the big reveal!

A message from Katie. Auction Site HERE.

The BIG Reveal!!
Sunday, February 20, 2011

Today's the day!  Tonight at 7:30PM EST, you will start to see auction items appearing one at a time at the rate of *about* one item per minute.  Over the course of more than 2 hours, you'll get to see almost all of the awesome items that have been donated.  There will be a few more items and gift cards added in the next couple of days, so keep your eyes peeled for that. (If you donated an item and you don't see it, or there is an error in the post, please email me at jonahsebauction@gmail.com.  I tried to double check for errors, but Patrice and I are only human and there are a lot of items. :))

Also over the next couple of days, you'll see a post that covers all of our legal jargon, as well as a bidding tutorial to help you prepare to bid on your favorite items.

Currently, all of the listings are locked.  Actual bidding on items does not start until Thursday (2/24) at 8pm EST.  Just before the start of the auction, all the posts will be unlocked so you can place your bids.

I hope you are as excited as we are.  This is going to be amazing.  I just know it!

Thanks for being awesome.

Katie

a giveaway!

Speaking of getting free stuff (oh we weren't... well, anyway) head over to Jonah's EB Auction Blog. Help us advertise the auction and enter for a chance to win a $20 gift card to your and my favorite store, The Target.  Get the details HERE.


Sorry to bombard you with links... but not really, cause all this stuff really excites me. Seriously, I'm about to pee my pants. You're welcome.

this and that

Y'all want to see something crazy?

 Yep, that is a hair, grown into Jonah's skin, causing a little mini blister around the site.

If he gets a hair under his bandages (his, mine, the kitty's), it literally grows into his skin OVERNIGHT. Isn't that weird? I guess, because his skin is always regenerating and healing it just grows over the hair? I don't know. I mean, I'd understand if there was an open wound there, but that was completely intact skin. So weird! When I mentioned it to his dermatologist, he'd never heard of that. Anyway, any day he has one of these (sometimes on an arm or leg), often two or three times a week, I have to take tweezers, break the skin, and get it out, just like you would for a splinter. His skin breaks away really easily though, so it's not as hard as getting a splinter out. Most of the time, the hair won't cause a blister. Skin just encases it. Either way, I get them out because I'm afraid it will cause an infection. I don't really know. It's all a guessing game.

Jonah: unplugged partially unwrapped.

"Helping" me get ready for an Anton Fundraiser.

Matt was weirdly proud of this photo. I just don't get boys. (Don't let this photo scar you and keep you from buying that green shirt though. :) )

Anton's fundraising page is now up with a beautiful header, thanks to my brother. Check it out! Starting tomorrow I'll be putting up fundraising opportunities. I'm not going to post them all at once, but keep checking back. There will hopefully be all sorts of fun ways to help. But you can always donate through his Reece's Rainbow Page if you want to keep it simple. :) I can dig it.

And y'all, I don't know if you've realized this, seeing how January lasted two seconds, but Jonah's EB Auction starts in 16 days! Katie posted the details on the Auction Blog. All proceeds go to DebRA. I'm getting so EXCITED! We raised $9,000 last year to help families and fund research. I'm so pumped to see what God has in store for us this year. Katie will start teasing us with sneak peeks on the Auction Facebook Page very soon. Don't miss out. There's nothing like 16 days of coveting and scheming to get the bidding blood a flowin'.

jonah's eb auction and another awesome fundraiser!

Just wanted to jump in and let you guys know that Katie and I are gearing up for Jonah's EB Auction Fundraiser. Last year's was amazing, and we hope to make it an annual event. We are so excited to get started! Last year, Katie had a vision of hopefully having 20 items and raising $1,000. Well, God and you guys knocked our socks off with your generosity, and we had around 130 items donated and raised close to $9,000 for DebRA. How 'bout them apples? We would love for this year to be even more successful (and even more fun, if that's possible), but we need your help to do it. Do you have anything you could donate? You can hand-make an item or donate new, bought items. Not sure what to donate? You or your company can donate a gift card to a restaurant or spa or even a gift card for a gas station or grocery store. Put your thinking caps on.


The auction will run from Thursday, February 24th at 8:00 pm to Sunday, February 27th (Jonah's birthday) at 8:00 pm. (Whatever 24 X 3 is) blissful hours to shop without guilt and to raise money for a cure for EB! 


If you are interested in donating items or some money for shipping costs (any money we don't have to spend on shipping goes to DebRA!), please email Katie at jonahsebauction(at)gmail(dot)com, and she will get back with you. We need to know what you'd like to donate and the value of the item. Katie will let you know the details from there. WOOHOO! Check out the auction site HERE to see how last year went.


Secondly, my EB friend, Janel (the one who did Jonah's AWESOME birthday cake) is hosting a fundraiser for DebRA right now. She sells Thirty One products and is offering a large personalized thermal tote for $20 or a personalized lunch tote for $18, and at least $7 from each bag goes directly to DebRA! Click HERE to see the bags, patterns, and font choices. If you are interested, you can print out and complete the order form HERE and mail her a $20 or $18 check to: Janel Waters, 912 S. Forest Creek Dr., St. Augustine, FL 32092. You can email Janel at janelwaters(at)comcast(dot)net with any questions. Oooohhh, I just had a thought. What if you bought a bag, $7 went to DebRA and then you turned around and donated it to the auction??!! Sorry, I'm getting carried away. I'll stop now.


Happy Shopping and don't forget to email Katie with your donation ideas! I can't wait! Oh yeah, Jonah's EB Auction has a page on Facebook. Click HERE to "like" it! Alright, I'm getting link happy. I'm really going to go now. I think I need a cold shower and possibly some Cheetos.

eb auction thanks

Katie posted this on Jonah's EB Auction Fan Page, and I just wanted to post it here as well. We really are so, so thankful to everyone who donated, placed bids, and prayed!

I just wanted to let everyone know that in lieu of mailing out Thank You notes, we decided that the $50 it would have cost for stamps, envelopes, and paper would be better spent as a donation to DebRA. I hope that everyone who donated items (and participated) knows how incredibly thankful we are for your generosity. It's because of you all that approximately $11,000 was donated to DebRA in Jonah's honor. Thank you from the bottom of our hearts and hopefully we'll see you in 9.5 months for the 2011 auction. :)

what a difference a year makes

One year ago today, I wrote this:

After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.

This night last year I experienced this:

I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.

Last year, this time, I had seen my baby stop breathing and had thought he was going to die right in front of my eyes (at 37 weeks and one day, just like Gabe). And I had gone home, now for the second time, having given birth but with no baby to take home with me. I had dreamed of demons and zombies coming after me with their skin falling off. This day and night last year was pretty hopeless for me.

What a difference a year makes.

Tonight I go to bed with hope for a cure and hope for Jonah's future. I smile and laugh more than I cry, and I just got to celebrate with my Jonah at the coolest kick-butt party EVAH (about a gazillion birthday party posts to come...).

I'm exhausted, but I'm hoping for sweet dreams.
*********************************

On a side note, between the $7,553.01 from the auction and the donations we got at Jonah's birthday party, DebRA will be receiving $9,222.01. And that's not counting Meg's Avon Event sales or anything that was donated directly to DebRA.

What a difference a year makes.

it's time!

THUNDERCATS ARE GOOOOOOOOOOOOO!

http://jonahsebauction.blogspot.com

bidding tutorial

I wanted to post some photos of Jonah's first time at the park (cell phone picture here) tonight, but Jonah didn't go down until close to 10:00, and I haven't even gotten them off my camera yet... so, hopefully tomorrow.

Just stopping in to let you know that Katie has put up a Bidding Tutorial on the Auction Blog and you can even practice bid, just to make sure you know how it works. It's super easy, and you should definitely try it even if the instructions make it sound complicated (Katie's words), because it's really not hard at all.

So go practice already. All the cool kids are doing it.

another guilt-free shopping opportunity

Hi Friends.

We are back from our mini-vacation, and we had a great time. It was so good to be away and get to relax a little bit. I made it all night long. I thought it would be fun to go out to breakfast but was pretty sure I'd wake up at 6:30 and want to come directly home. But I actually made it until 7:15, AND we went out to breakfast. I missed Jonah, but I also remembered how much I love greasy breakfast food - so off we went. We got home, did dressing change, and now Jonah is being SUPER fussy because he hasn't napped enough today and is exhausted. Not sure how we're going to hold a nap off until 4 to coincide with his next feeding. Probably won't happen.

I just wanted to let you guys know that Meg (Leah's mom) is hosting an Avon event where she'll donate 100% of the proceeds of her sales to DebRA. You can get all the details and the purchase code here. Happy Shopping!

(I don't know about you guys but I am LOVING all this guilt-free shopping with all money going to help cure EB. THAT is what I'm talkin' about.)

And in case you haven't been by lately, Katie has put up all the items up for bid on Jonah's Auction Site. The comments are closed until the Auction starts (Feb 23rd, 12:01 am, EST), but you can go preview all the items, make your lists, and plan your strategy. Let the games begin (well, almost, anyway)!

meet caroline!

If you have a chance today, stop by the Auction Blog to meet Caroline, a four-year-old EB friend in Illinois who also has Junctional Epidermolysis Bullosa.

Adrienne, Caroline's mom, has been a huge support and source of encouragement for us during this last year. She's always so positive and hopeful, and that's exactly what we need - HOPE. Caroline has probably been the closest case to Jonah's we've found, and she's doing GREAT!

Caroline makes us optimistic and excited about Jonah's future.

Make sure you stop by and read her story.

We love you, Provost Family!

jonah's auction and tasty soup

Jonah really loves his new exersaucer. And I love it too because between that, him being able to sit up (with his boppy behind him and a pillow on each side in case he falls) and play by himself a little, and his new chair (that goes up to 40 lbs), I'm getting a little more hands-free time. He has now decided that the only way he'll sleep during the day is if I hold him. Period. He used to take a 28 min nap in the afternoons, but he's over that now. Really, it's okay though. There are much worse things. If I didn't have so much to do, I could sit and rock him for hours. He smells yummy. :)

************************

I hope you guys are able to keep up with Jonah's EB Auction Fan Page on Facebook. Katie is hosting some fun guessing games and some awesome sneak peeks of many of the auction goodies. She's also putting the sneak peeks on the actual Auction Blog Site, so you can still see them, even if you don't have Facebook.

Believe me, you are not going to want to miss this. I know that sounds very salesmanny of me, but I don't mean it that way. I really do mean there is tons of great stuff that's going to be up for bid, and it's for a good cause. And it's going to be so much fun. And even if you feel like you shouldn't really spend money, there are gas, grocery, and other practical gift cards to places you'd have to spend money anyway. So really, you are paying (less) for stuff you'd have to buy anyway, and your money is going to help cure EB. THAT's what I'm talkin' about.

************************

Are you ready to love me (and Aunt Kim) forever?

My sister-in-law, Kim, sent me a recipe out of Food Network Magazine. It's called Almost Famous Broccoli-Cheddar Soup. Panera wouldn't give up their Broccoli Cheddar Soup (Have you tried it? It's soooooooooo tasty!) recipe, but their chefs came up with this concoction that they claim is a very close knockoff. I have to admit - I did a little happy dance when I got in the mail.

I have not tried it yet. I'll leave it to those of you who, say, have kids who take naps. Let me know what you think.

Here's the recipe:

6 Tbsp. unsalted butter

1 small onion, chopped

1/4 cup all purpose flour

2 cups half and half

3 cups low-sodium chicken broth

2 bay leaves

1/4 tsp freshly grated nutmeg

Kosher salt and freshly ground pepper

4 7-inch sourdough bread boules

4 cups broccoli florets (about 1 head)

1 large carrot, diced

2 1/2 cups (about 8 oz) grated sharp white and yellow cheddar cheese, plus more for garnish

1. Melt the butter in a large Dutch oven or pot over medium. Add the onion and cook until tender, about 5 min. Whisk in the flour and cook until golden, 3 to 4 min. Then gradually whisk in the half and half until smooth. Add the chicken broth, bay leaves, and nutmeg, then season with salt and pepper and bring to a simmer. Reduce the heat to medium low and cook, uncovered, until thickened, about 20 minutes.

2. Meanwhile, prepare the bread boules, using a sharp knife, cut a circle into the top of each loaf, leaving a one inch border all the way around. Remove the bread top, then hollow out the middle with a fork or your fingers, leaving a thick bread shell.

3. Add the broccoli and carrot to the broth mixture and simmer until tender, about 20 minutes. Discard the bay leaves. Puree the soup in batches in a blender until smooth; you'll still have flecks of carrot and broccoli. Return to the pot. (Or puree the soup in the pot with an immersion blender.)

4. Add the cheese to the soup and whisk over medium heat until melted. Add up to 3/4 cup of water if soup is too thick. Ladle into the bread boules and garnish with cheese.

Seriously, let me know if you try it. I really want to know if it tastes like Panera's. I crave it. It's a sickness, really.

fun sneak peeks on the fan page

Um, so I've sort of been out of the Facebook (and blog and Twitter) loop these last couple days but there's some fun stuff and some great sneak peeks going on over at Jonah's EB Auction Fan Page on Facebook.

You should definitely check it out! I'm getting so excited. I probably should have been better about saving up... self control may be a problem.

Also, this is not a for real blog post but I'll post my random thought from yesterday:

Random Thought of the Day: Stubbing your pinky toe on your left foot really, really hard on your child's new (humongous) exersaucer may be the most excruciating pain in the world. Yes, I've given birth to two children. I stick to my previous statement.

PLEASE help us get the word out

Jonah has been asleep IN HIS BED for over an hour and a half.

Can we all just take a moment?

Ahhhhh, that's better.
************************************

The real purpose of this post is to ask for your help. Jonah's EB Auction is quickly approaching, and we need major help getting the word out. To catch those of you up who may be out of the auction loop, my friend Katie is hosting an online auction (of LOTS of great stuff) in honor of Jonah's upcoming First Birthday to raise money for a DebRA to help fund a cure. Here are the details.

When all of this was just a gleam in her eye, Katie was hoping we would get 20 items for the auction. Well the response has been so amazing (and completely overwhelming... in a good way), we find ourselves with around 100 items up for bid. This is great! And frankly, a little scary. Because without enough people to actually bid on the items, the fundraising fundraiser becomes a little more challenging.

So could you help us?

If you hop on over to the greatness that is Jonah's EB Auction Site, you can see ways you can help spread the word (blogging about it and linking back up to the auction site, adding the auction button to your sidebar, and becoming a fan of the auction group on Facebook) all for a chance to win a Target Gift Card (rude starers not included...).

AND because you love Jonah (and Gabe and Tripp and Leah and Sam and on and on and on...)

AND because you hate EB.

So please stop by the Auction Blog to see how you can help us advertise the auction and get yourself entered to win. And tell your friends and family - bug, harass, be completely relentless... all in the name of Jonah. I give you permission.

I mean, it might even help me get out of my funk.
(Oh man, Patrice, that was a low blow... No you didn't.)

Love you guys so much. Thanks :)