Friday, December 31, 2010

Travel to Chicago Day #1

Well we got up this AM, took Brooklyn to the doctor, & found out that she's perfectly 100% healthy! :o)  There's not a lick of fluid behind either of her ears. Yay!! But we got a script (& filled it) for some antibiotics just incase she starts to get sick between now & surgery. So we were finally all set to jet!!!

While we were at the doctor, Dustin packed up the car. When we got home we were all ready to go so we piled in the car & headed to Billings. We ended up leaving at 10:30am. We stopped there for lunch at 1pm (& my famous frozen yogurt) & then got back on the road towards WY at 3:30pm.

As of last night we were planning on going through WY, NE, & IA. But this AM Dustin's dad called & said that roads were closed in all 3 states. Oh how great. We already knew that ND was horrible, so our only other option was SD. So we went through Sheridan, Buffalo, & then stopped for the night in Gillette, WY. We got here around 7:30pm. The roads were pretty bad so we ended up getting to Gillette a lot later than we would have if the roads had been good. But that's how it goes when you travel in the middle of a huge storm!

The girls travelled quite well. Brooklyn gets a little restless, but as soon as we get her up & out of her seat she's just fine. Cali watched DVD's all day (the same 2 over & over...but hey, she was content!!)

So here we are in WY in a hotel on New Year's Eve! :o) We're planning on getting up at our regular time in the morning & heading out (which is around 7:30am). I see the ball drop every year, but I'm not so sure we'll be staying up tonight!!!

I hope everyone has a great New Year's. To my family: eat some Black Eyed Peas for me! We'll be buying some when we get to the grocery store in Chicago & eating them a few days late. But hopefully the good-luck fairy will understand why we couldn't eat them on New Year's Day! ;o)

Thursday, December 30, 2010

That's Life!!

Originally we were supposed to leave New Year's Day. But because of the weather we've been having we decided to leave New Year's Eve. Now we're wondering what the heck is happening!!! LOL 

First off, we have 3 different ways we can go: through North Dakota, through South Dakota, or through Nebraska. For some reason my gut is telling me not to go north...that we'll be safer driving if we go south. We heard of a bad car pile-up in ND. So now we're feeling better (gut-wise) if we go through Nebraska...even though it adds about 4 hours to the trip. (But hey, what's 4 hours when you're driving 20-24 anyways?!) I've been checking road reports but it doesn't predict the future. Right now in Iowa it's totally clear so we're now thinking NE is the way to go. So here's to praying for clear roads!

Second off...when we picked up the girls after I got off work today our babysitter told us that Brooklyn had been pretty crabby today & that she was grabbing at her ears all day! Fan-flipping-tastic!!! So, since our doctor is closed on Friday, I'm going to take her in to the doctor I work for tomorrow first thing in the AM. Here's to praying for a healthy baby!

And last but not least, Noro-Virus has been going around our town like crazy. Well guess what...tonight at about 8:30pm I started with the symptoms. I'm certainly not going to get into details, but I've been pretty queasy & yada yada yada (but thankfully no vomiting...yet). Thankfully though I've been feeling slightly better in the last hour or hopefully we'll be able to leave in the AM. If I do end up with this, we won't be able to leave until like Saturday PM or Sunday AM which surely won't get us there on Monday night like we need to be. So here's to praying for a healthy mom!

And that's that!!! I'll update more as we know more! Thanks so much to everyone who has given me links online to road reports. I really appreciate it. This is the time when I wish I wasn't an adult...and that I could just ride along with whoever was driving! Many prayers are needed right about now...

Wednesday, December 29, 2010

A Great Christmas...and Packing!

What a great Christmas!! I think Cali got a bit overwhelmed though! By the end of the day we were literally forcing her to open presents! LOL  Brooklyn just watned to open stuff so she could put the paper in her mouth! What a silly monkey. I took more videos than pictures, unfortunately. So I don't have a lot of pictures but here are a few:
 Brooklyn wearing Uncle Curt's hat
 Uncle Curt with Cali & Brooklyn
 Brooklyn eating Oma's keys
 Cali finishing up her popcicle before she opens up her Christmas Eve present
Brookie standing by the cat...she's so proud of herself too!

We had a great Christmas. But Christmas also meant that we leave in a week. UGH! Unfortunately though, we have been having a HUGE snowstorm. I guess we're supposed to get like 6-12 inches in just a day or 2. So we decided to leave a day early. We're not leaving early to beat the storm or to miss it or anything; we're leaving early to give us enough time to get there. We need to be there by the 3rd at dinner time, so by leaving on Friday that'll assure that we're there in enough time. So off to do more packing I go!!

I also wanted to share this paragraph again. I'll be posting it often, becuase I want everyone to see it!! :)

(I do need to make a very quick side note...I need everyone to know that we're still living our lives as though Brooklyn didn't have a nevus. This means that we use our OWN money for anything and everything. We are BY NO MEANS using ANY of the donation/Brooklyn's Best money for our own personal use. I have said & I will always say, and mean, that that money is being used for insurance deductibles, anything that insurance doesn't pay, and for our trips to/from Chicago. So when I talk about getting Christmas pictures taken this is just like every other year - meaning that we save up for them & use our OWN money. I just wanted to make that clear, so that I don't have to repeat myself time after time!)

Sunday, December 26, 2010

Welcome To Holland

This poem was just intruduced to me a few days ago. It immediately brought tears to my eyes. It's perfect. That's all I can say about that it's perfect.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books & make your wonderful plans. The Colisseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags & off you go. Several hours later, the plane lands. The stewardess comes in & says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland & there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, & disease. It's just a different place.

So you must go out & buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a a while & you catch your breath, you look around....and you begin to notice that Holland has windmills....& Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming & going from Italy...& they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fat that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
-By Emily Perl Kingsley

This immediately brought tears to my eyes....for the obvious reasons, but also because I was meant to read this. All those close to me know how passionate I am about The Netherlands. I lived there for a year. It's the most fabulous place in the world. If I couldn't live in the US, The Netherlands is where I'd go. This poem hit home, in a great way. I have printed it off & it's now in my purse, going everywhere with me so I can pull it out & read it whenever I need to. I also love the part about meeting a whole new group of people that I'd have never met. This couldn't be more true! I've met a fantastic group of people through this whole thing that I'd have never had the pleasure of knowing if this wouldn't have happened. I am one blessed girl...

Tuesday, December 7, 2010

9 months old?!...2nd round of Christmas pictures...and COOKBOOKS!

Today is the 7th...which means Brooklyn is another month old. Today she's 9 months already! Crazy how fast time goes by. Brooklyn has been standing up for a while now, & just last night she's started walking with a little kid stroller that we have. She got 2 bottom teeth a month or 2 ago but now she has the tips of 2 more (one more on the bottom & one on the top). She's starting to eat like a champ, which is reassuring to me. Hopefully she'll gain more weight soon. She doesn't need to be seen until she's a year by our doctor, but I'm taking her in at the end of the month just to have a check up & make sure she's a-ok for surgery. (She'll have a pre-op appt in Chicago, but I just would feel so much more comfortable if she had one here as well.)

Our little Cali is also doing fantastic. She's sure a firecracker. She's a stubborn little 2 1/2 year old (must take after her daddy???). Her vocabulary is just amazing. She's caught on to a bad word as & dad need to watch their mouths! :)  Our doctor wants her out of day care for the last half of this month, so she'll miss playing with her friends a lot. But it's necessary for Brooke's immune system.

Today was our 2nd round of Christmas pictures. Quite disappointing, to say the least. It wasn't the photographer at all. She was great. It's really frusturating though working with a 2 1/2 year old who won't cooperate. Cali would NOT smile. What was so frusturating for me though was that I'd been talking to Cali about getting pictures done her pretty red dress...ever since our bad Sears experience. She was so excited to get them done. But once we got there, and after about 3 minutes of sitting, she wanted to go home. And then...just like at Sears...Brooklyn wouldn't smile again! At least she didn't do the weird jaw-clenching face she did at Sears. But we didn't get ONE picture of her beautiful smile.

It was quite disappointing. We wanted a family picture for our Christmas cards...which we didn't get. We ended up with an OK picture of Brooklyn, an OK one of Cali, and a cute one of the 2 of them for the cards. So it'll just have to do. The photographer really did well as my mom, Dustin, & me...but we just couldn't get it. So I just need to realize that not all picture sessions will be good anymore! :(

On a better note...COOKBOOKS ARE IN!!!!!! They were delivered yesterday in 21 boxes (19 boxes of books, 2 boxes of tabs). Last night we had a tabbing party. 8 people were here tabbing away...eating enchiladas & drinking adult apple cider! We got 9 boxes tabbed....quite impressive! So tomorrow we'll be re-stocking all the businesses here in town. I've gotten all the orders filled that I couldn't get completed after we ran out of the first batch of books...and all those will be mailed tomorrow. Exciting stuff!!

Surgery #1 is officially less than a month away. It's so real now. I'll be keeping this site updated as often as I can so that people can follow our progress. Well that's it for now! :o)

Tuesday, November 30, 2010

Miracles Happen...When You Believe!!!

Well.... less than 24 hrs ago I was writing about my cookbooks & not having them in time for the stroll on Friday. Well imagine my surprise when just about 1/2 hr ago I got my billing sheet from the cookbook company & all they need is payment & then the books will be shipped! UHHHHHHH...I think I'm still in shock!!!!!!!!!

I called them & they said it'd be 3 business days: Wednesday, Thursday, they'd be here Monday! UGH...just 1 business day after the stroll! Fortunately they are able to send a couple boxes that could be here by Friday. Well after lots of thinking in a VERY short amount of time, I decided that Monday is just fine to have the books. First off, they'd not only have to send a couple boxes, but would also have to send the page tabs/dividers too. Also, it'd probably be a couple hundred dollars extra. And third, UPS doesn't deliver to our house until after 5pm...and the stroll starts at 5pm! So that would leave me running around like a crazy person getting tabs in the books & getting them to the stroll...along with all the hot drinks & goodies that I was planning on making. And then to top it all off, I'd MAYBE sell like 6 books, so it just wouldn't be worth all the running around

So as much as I'd LOVE to do the stroll, we're gonna bag it & just take the books on Monday and be happy about it. They're all paid for & will be in the mail tomorrow so will be here Monday!!!!!!!!

Monday, November 29, 2010

Cancelled Pictures.....and SCENTSY!!!...oh and a cookbook update!

Well today was supposed to be our 2nd try at Christmas pictures, just this time they're here in town. Unfortunately our picture lady came down with the flu. :(  So now we need to reschedule. I'll definitely keep everyone posted on how they turn out! Last night I got out a bunch of "props" to take with us for the pics so at least I have that stuff ready.

On another note...another extremely generous friend of mine has offered to do a Scentsy Fundraiser for us. For those of you that don't know what Scentsy is (cause I was one of those people about 2 months ago)...its wickless candles. The stuff that smells so good melts in a jar & makes the room smell so great. This is a catalog/online party that ends this Saturday. There is also an open house for those of you who live in Lewistown & would like to come to my house for some smellin-good-times!

The Open House is Sat, Dec 4th from 2pm - 6pm. Stop by whenever is most convenient for you! If you need directions just let me know.

The online party is available by clicking on the "Brooklyn's Best" link at:

Thanks in advance for all the support. It means a lot!!

Now for the cookbook update: I called the company today & for the very first time I spoke with someone not so nice. Dustin then called & we now have a "contact person" who we can talk to each time we call so that we're not always talking to a different person. I was going to have a booth at the Christmas Stroll on Friday night...selling cookbooks, hot drinks, & goodies. Unfortunately, since I'm out of books I can't do that. :(  Last Monday I was told that they may be here by then, and to call back today. Then today they said there's no way! They can probably be printed by Friday but they can't be here by then. Oh well I guess, what can you do?! So best case scenario: I'll have the books in a week....which, in the long run, I'm happy with. If I couldn't do the Christmas Stroll at least I'll have the books in PLENTY of time for Christmas!

Sunday, November 21, 2010

Bad, bad pictures :_(

It's November which means it's Christmas picture time!! I enjoyed getting Cali's Christmas pictures taken so much the last 2 years so I was even more excited this year now that we have TWO daughters! For those of you that don't know...we live in a small town so every time we get pictures taken we go to Sears in Billings or Great Falls. I made an appt for Tues the 16th at 1pm. I wanted to get there early so I could buy the girls their Christmas dresses.

(I do need to make a very quick side note...I need everyone to know that we're still living our lives as though Brooklyn didn't have a nevus. This means that we use our OWN money for anything and everything. We are BY NO MEANS using any of the donation/Brooklyn's Best money for our own personal use. I have said & I will always say, and mean, that that money is being used for insurance deductibles, anything that insurance doesn't pay, and for our trips to/from Chicago. So when I talk about getting Christmas pictures taken this is just like EVERY OTHER YEAR meaning that we save up for them & use our OWN money. I just wanted to make that clear, so that I don't have to repeat myself time after time!)

Anyways, we got to Sears just after noon, found 2 matching adorable red dresses with velvet darker red polka dots on them with a red velvet belt...soooo cute! I'd brought white tights & then my mom bought them cute black shoes. We got to the portrait studio at 12:45pm & was told that it'd still be about 15 mins. We got the girls dressed & waited. Then we waited some more...and more...and waited more. It was 1:15pm & we were still waiting. Cali was running around & dancing around, playing with their toys. Thankfully she was being a very good girl.

The lady that was there taking pictures was finishing up with the people there before us. She had to "fix" their pictures & then show them their pictures. Right as it was our time to go in, another lady came in with her picture CD & asked to go through her pictures on their computer. So the lady taking the pictures helped her first! By now it was 1:30pm & we'd waited 45 mins. Then the lady said that she had to help the people before us actually place their order so she had the girl there that was training start our pictures.

VERY long story short, we had to show the girl how to place the girls on the table thing with the background b/c she didn't know. Sears takes 9 pictures for you to choose from. Well this girl started by just practicing & she took a horrible picture of Brooklyn.

Finally the original lady came in (who I found out later was the supervisor of the place) & she started our pictures. By now it was like 1:50pm. She did get out some cute backgrounds and she got Cali to smile beautifully.

Unfortunately though, my Little Miss Smily Brooklyn would NOT smile. She just had this fixed-jaw look like she was mad or confused! And to top it all off, she wouldn't take her hand out of her mouth. The lady wouldn't try to get her to laugh, smile, or take her hand out of her mouth. She'd just take a picture & tell us how "cute" it was, when we obviously could see that it was a bad picture. Then she'd tell us "oh it's ok we take 9 pictures...we still have a few to go".

cute of Cali but not as much so of Brooklyn

again...cute of Cali but Brookie isn't even looking at the camera!
 But by then she'd already taken the 9...and there were only 2 cute ones...unfortunately they were just the 2 individual ones of Cali. I don't at all want to say that the pictures of my girls were horrible, but believe me, they were not good! There was no way I could have picked out the pictures to share with everyone. I could NOT get excited about them & want to show them off.

kinda looks like she's falling...or flying!

this one's actually adorable of Brooklyn...but Cali isn't looking

It's 2:30pm now. So she "fixed" our pictures by adding borders & collages and then came & showed them to me...and then she said, get this...."ok well it's my break time now so I'll be back in 1/2 hr". And then she left!!! Another worker had come in at 2pm, but was busy taking pictures of another family. She said that if I got done picking out what pictures I want that the other girl would help me. I asked about pricing because last time we got a pretty good deal & this time I had a 40% off coupon. She basically only allowed me a $199.98 package or a $189.98 package. She said that the CD, even with the 40% off, would be $150. All I could do was laugh in disgust because their prices seem to change every single time I go in that place!

this is the fixed-jaw look that she was into that day!
 So she went on her much needed break...HA...and I just picked 1 of each picture (took me about 5 mins) and then stood up so the other worker could see I was done. I stood there for 20 minutes!! Finally she says to me "Did you need something"...uh hello?!!! "YES!! I just want to go!" I said. She came over about 5 mins later (at about 2:55pm) and started putting my order in the computer. Unfortunately for both of us I snapped at her a few times. I did apologize though cause she didn't have anything to do with it. Talk about being frusturated & sooooooo upset! I was trying SO hard to not let them see my beet-red face & tears in my eyes. THANK THE LORD my mom was there to walk around the store with the girls cause they were all antsy & just wanting to leave.

3pm rolls around & my original picture-taker comes back from her break & finishes up helping me. I paid & walked out (at 3:15pm - 2 1/2 hrs after getting there) without saying anything. I know what you're probably thinking..."WHY GET ANYTHING?!!!" I'll tell you...because these were my much-anticipated Christmas pictures! If I were to have left without getting anything then we'd be Christmas picture-less and I couldn't do that. The biggest reason, however, was because this is the last time that Brooklyn will have her pictures taken professionally in a very long time. The next time will probably be when Cali turns 3. I just wanted these to be special & I was so sad that they weren't good.

I had a day or 2 to "ponder" our experience. I was so mad that they didn't even apologize for waiting for so long & they didn't even offer me a price break or even a free 8x10!!! Naturally, I was pretty upset for the rest of that day, and then to top it all off we got stuck in Billings cause both roads into Lewistown were closed due to snow storms. So we had to go to WalMart & get toothbrushes, PJ's for the girls, etc. That certainly didn't make me happy! Anyways, I decided that I needed to either get my money back or have the Sears in Great Falls re-do my pictures. I couldn't live with these cause I couldn't pick a "good enough" one to send in our Christmas cards. I called the Sears portraits customer service number & the lady I spoke with was very nice. She apologized profusely & then looked at the pictures. She agreed that they were not good pictures. I told her bits & pieces of my story & she just couldn't believe it. I couldn't get away with getting all my money back because I had the CD, so I got 2/3 of my money back. I'm happy with that. Even though the quality of the CD is bad, at least I got 2/3 of my money back.

So now what...we still need Christmas pictures of the girls!!!!!!! I made an appt at a place here in town so hopefully they'll be good. I actually am fairly confident that they'll turn out cute. She just doesn't have the cutesy, cheesy Christmas backgrounds that Sears does. Why have I never gone to her before? Because even though I have the CD's, Sears keeps all the pictures on their computers. So we've just gone there every time. Our 2nd try at Christmas pictures is Monday the 29th. All good luck wishes will be appreciated!!!

Saturday, November 20, 2010

Good News & Bad News...

Well the good news is that we have sold 500 cookbooks!!! The bad that we're sold out of cookbooks. :(  Thankfully though I'd already placed another order of 500 more books at the beginning of the month. They originally said 6 weeks but then said that the day may get moved up as we get closer to it. I'm going to call soon & see if there's anyway to expedite it. I have people that have already ordered books & businesses here in Lewistown that are out of Im going to do everything in my power to get them here ASAP!!

So keep those orders coming & I'll send it to you as soon as they come in! (And YES, they will be in in plenty of time for Christmas!!)

Thanks to you all for the support! :o)

Monday, November 15, 2010

Awesome Support

WOW what a fast weekend this was! I'd been planning a benefit dinner in honor of Brooklyn for a couple months now. Originally I was just going to have the dinner but a friend stepped up & volunteered to be in charge of the auctions, if we decided to do that. What an amazing team we made! She (Jamie) did the auction part of it while I focused on the dinner part. Both were HUGE undertakings but we worked quite well together & we got it done.

The dinner was Sat night 11/13 at 5pm at our church here in Lewistown, MT. Originally I was going to get enough food to feed 250 because I wanted to have more than enough. Well once we had all the flyers out, a newspaper article, & radio ad's on we knew it'd probably be a bit bigger than that. I ended up ordering enough food for 300-350 people and believe it or not we served 350 people! (We had a clicker counter thing so we're fairly accurate with that number.) I'm still in awe at how many people came to show us their support!

We had probably 30'ish silent auction items and probably about 40 live auction items. (I could be off a little, but I'm probably kinda close.) Unfortunately at the last minute we were auctioneer'less so Jamie's dad stepped up & helped us out. It was a fun night of auctioning I think! We had some great items that individuals and businesses donated to us out of the kindness of their hearts. I even had total strangers call me up at home asking if they could donate stuff! Amazing how people want to help.

We were exhausted by the end of the night but we were SO happy with how things turned out. We filled the place twice, fed 350 people, sold everything in both auctions, & ate great food! We had family come from out of town as well, which was such a treat. I'll post pictures as soon as I get them!!

I have already thanked people, but I can't do it enough so here goes again: HUGE thanks to Jamie for co-planning the dinner; to Steve for the clicker-counter thing; Dan Gill for auctioneering; Harry's Place for offering to get the food for us; Dave Murray at the News Argus for writing a great article & helping out at the auction; Terri Hall at the radio station for doing interviews; Ian, Tracy, Kimo, & Dona for cooking food; all the volunteers for helping serve food, get drinks, & do dishes; the MANY individuals & businesses for donating items for both the live & silent auctions; & of course all the people that I'm forgetting. I know there's probably people out there that I'm forgetting & I apologize! I really do thank you all from the bottom of my heart.

We ended up making enough to cover 2-3 of our 5 trips to Chicago. It's a HUGE start & we are so thankful! I still have 2 1/2 boxes of cookbooks left & I have another 20 boxes coming in a few weeks! We won't stop selling cookbooks until the last surgery is over so if you know of anyone that doesn't have a cookbook yet please let them know! :o)

Thanks again to everyone who made the dinner possible. We're so thankful to have you ALL in our lives!

Monday, November 8, 2010

It's Normal!!!

Wow we've had a crazy past couple of weeks!! Here's a small update...

First, we had Brooklyn's MRI 10/19/10. As I wrote before, they said it was normal, which was great news. However, the MRI needs to be ran & read a very specific way to be able to see what we were looking for so I was a little skeptical that it wasn't done right. Nevus Outreach does tons of research so I sent our MRI to them. They have the top doctor, who specializes in this, read the MRI free of charge for us. They said it takes about a month or longer to hear back from him, but we heard back today!!! There was nothing but "Normal" all over the whole paper! Talk about having a perma-grin & letting out a HUGE sigh of relief!!!!! No NCM to worry about. I'm so thankful. :o)

Also, we've been planning this benefit dinner like crazy! It's this coming Saturday 11/13/10 at our church starting at 5pm. We're having a create-your-own pasta buffet and several desserts featured in our cookbook. I'm so looking forward to the dinner, but it's been SUCH hard work that I'm also looking forward to it being over. One person in particular, Jamie, has been more than just "help" to me. She's been amazing in planning this & we definitely owe her!!!!!

We have had SO many amazing people come forward to help us out. It's been in the forms of monetary donations, cookbook sales, auction item donations, volunteering, & prayers. I can't express my gratitude for all the thoughtfulness that everyone's showing us.

On a less positive note...we've had our share of people question what we're doing & why we're doing it. It's frusturating because these people are some of the people closest to us in our lives. Those should be the MOST supportive, not the least supportive. It's just sad when people close to you question what you believe is right. Oh well though...we know we're doing the right thing. And we know that we have to raise money. So that's all that matters.

Cookbook sales are amazing!!! I ordered 500 books but was sent 567; they came in 19 boxes. Amazingly...I only have approx 4-5 boxes left!!! We're selling them at the dinner so I'm almost positive they'll sell out! :o)  Rest assured though...another order has already been placed & it should be here within the next month.

We've had our share of mishaps too. Dustin's been not feeling well for the past day or so...has a really bad stomach ache. Then to top it off it snowed almost all day today...not fun for mail carriers. Cali has had a cough for almost a she's going to the doctor tomorrow. I've been having "girl problems" and school problems too...which isn't fun. And Brooklyn is just a happy little camper!!! :o)  Nothing wrong with that girl, thank goodness. I've been busy researching & planning our first Chicago trip.

We have a jam-packed-full week ahead of us. Here's to hoping things go smooth!!!!!!!!!!!!!!!

Wednesday, October 27, 2010


We're so proud to announce that our cookbooks are finally in! (I say "finally", but they actually got here before the original shipping date!) They came in 23 packages that weighed almost 1000 lbs...poor UPS guy!

So now what?! We're busy getting all the inserts ready & putting the tabs in, but they're ready for purchase. You can contact me or Dustin...or anyone in our family for the books, or you can click on the ADD TO CART button to the left.

If you need to place a big order, need clarification, or just have a general question please don't hesitate to ask! Our contact info is on the left under "Contact Us".

Thanks in advance for the help with our cookbook fundraiser!  Oh...and yes, they will be available to purchase at our benefit dinner on 11/13/10 as well! :o)

Friday, October 22, 2010

MRI & results

Well I decided we needed to go ahead & do the MRI earlier than January. There is a condition that people with nevi's can have. It's called NCM (neurocutaneous melanocytosis) & it can cause hydrocephalus, seizures, &/or developmental delays. Essentially NCM is a satellite nevus that's on the brain. For more info see the FAQ section to the left.

So we had an appt for 4pm Tues 10/19/10. We got there at 2:30pm, filled out paperwork, & then a nurse came & put some numbing cream on each of her feet & each of her hands...this was for the IV, so it wouldn't hurt when they poked her. At about 3:40pm they came out & said they were ready for her. The anesthesiologist showed us to her bed & he let me hold her the entire time. He took the cream off both of her hands & started her IV pretty quickly. She fell asleep within about 4 seconds while I was holding her. I layed her down & they put oxygen on her & then we had to leave because they were taking her back to the MRI machine. They said it'd be about 45 mins.

With the numbing cream on her hands before the MRI.

Waiting for her MRI.

Of course I couldn't do anything but watch the clock. 65 minutes later (at 4:45pm) they came out & got us so we could go back to see her. She was laying there so peacefully with the oxygen still on. They said that it took a little longer than expected because she was coughing so they had to stop & suction her out a few times.

At 5:15pm, 30 mins later, she started stirring & waking up. The nurse took her IV out pretty quickly & then I got to pick her up while she was waking up fully. She was such a cute little baby! She couldn't open her eyes fully & she just looked groggy. She was looking around like "what the heck is going on?!" My mom sat with her in the chair & fed her some apple juice, which she just loved!

Still groggy - drinking her apple juice.

About 1/2 hr later she was ok to leave. She sounded good to us, didn't cough at all, & was fully awake, so we left! About an hour or so later she was back to her normal self!

Later that night, right before bed.

They said the MRI would be read either that night or the next day. I waited & waited to hear the results but no word came. The next day (Thursday the 21st) I called the MRI place & they said they'd already faxed the results to my doctor's office. I verified the fax number but it was wrong!!!!! So I spent most of the day on the phone between the MRI place & my doctor's office trying to figure out where these results were. (I had to find out Thursday cause my doctor is closed I'd have had to wait until Monday...& I just couldn't do that!) Finally at about 4:45pm I got the results. She's free & clear of any spots on her brain! Everything looked healthy & normal!!! Now I just need to send the MRI to the specialist that reads it one more time just to make sure...and then we'll be good to go! :o)  Yay!

Friday, October 8, 2010


A friend of mine is graciously hosting a Tupperware party for Brooklyn's surgery fund! The party ends on 10/29/10. If you'd like any Tupperware the info is below:

You can either see a catalog from me if you're close to Lewistown. Or you can go online. The fundraiser link is:!twx$eparty_ctl.p_guest_welcome?pv_eparty=d71b71de65396d44257ed59292770379  and we get 50% of the profit from that. The catalog link is: & we get 25% from that. :o)

Contact me if you have any questions! :o)  And thank you, in advance, for your support!

Friday, October 1, 2010

Not even a FLINCH!!!!

Brooklyn needs to have her vaccines completed at least 2 weeks before each surgery, and then can't have any vaccines while her expanders are in, and then at least 2 weeks after each surgery. Because of this, we got her first flu shot today. Babies who haven't ever had a flu shot before (and who are young enough) get 2 shots. Today was her first one & I tell you what....she didn't even flinch! No crying, no tears, no whimpers, no NOTHING! I watched her get the shot so I know she did get it!!!! LOL  I can't believe it.

I'm amazed. ;o)   Her 2nd one will be the first week of November. Then we'll be vaccine-free until after her expanders are out at the end of March. So that's our story!!!

We leave for Chicago just 3 months from today...already. I can't believe time has gone by this quick. It'll be here before we know it. I'm busy getting together packing lists so we don't forget odd's & end's. Even still though I'm sure we'll be forgetting something.

Our cookbook proof will get to the company today. I'm crossing my fingers that the books will be shipped in a couple weeks now!!!

Friday, September 24, 2010

Short, Sweet, & to the Point...Our Quick Trip to Denver

WOW what a crazy past few days! Just 1 week ago today (almost to the minute) I was on the phone with Denver Children's Hospital making an appt with a pediatric dermatologist. We packed up & left on Sunday at 9:00am. After getting gas we were on the road at 9:30am. Long story short...we only had to stop about 5 times on the way down. We got there 11 hrs 15 mins 8:15pm. Not bad for our first road trip together!

Sunday night we did nothing...which was nice cause we were both tired. Monday we got up & sat around for a little while. Then we went to the mall for lunch, walked around, & then went to Target. Then went back to Jenn's & ordered dinner & went to bed. Jenn showed me my new favorite place...a frozen yogurt shop where you serve yourself. There were like 10 different kinds & you could mix & match as much as you wanted. Then there were tons of different types of toppings, too!!! Ahhhh I was in heaven. For those of you who don't know...I don't like ice cream so frozen yogurt is my fav-or-ite!!!!!!!!! So I had to partake in some yogurt...almost $8 worth of it, too!

Monday we got up & went to the mall in search of the Disney store....LOL it'd been out of business at that mall for 3 years! But I did get something I'd been looking for for a while now though. I was SOOOO excited. I'd been looking for some type of head covering for Brooklyn when she has her expanders in her head. Something that was more fitting around the forehead but huge around the rest of her head. I thought maybe a scarf would work but I wasn't quite sure how I'd tie it. Anyways, we were walking by Aldo Accessories & Jenn saw it! I loved it so much & was so confident that it was the PERFECT hat that I bought 3! Here it is:

Tuesday afternoon was her dermatologist appt. It was at the new Children's about huge & super nice!!! I actually found the place quite easily & then found the office pretty quick, too. I'm glad I took Brooklyn in her stroller though cause it would have been a lot for me to carry everything. We checked in & they took her weight & stuff. Then we went to the room where the nurse asked us a bunch of questions. When she was done a resident came in & I answered pretty much the same questions for her. Then the doctor came in. Her name is Dr. Joanna Burch & she came in with a slew of residents & fellows!

I'd told them that we're seeing Dr. Bauer in Chicago starting in January so Dr. Burch asked outright..."Why are you here & not in Chicago?" She was very straight forward, but was very nice about it too. I told her why...cause it's much easier for us to get to Denver than it is to get to Chicago. She completely understood; but then said that if we have to follow up with the surgeon in Chicago every year or so then she'll give me the name of a pediatric dermatologist in Chicago that we can see in stead of us going both to Chicago & Denver. Totally makes perfect sense to me, but I'm sure that we don't follow up with Dr. Bauer. She said that she's perfectly fine seeing Brooklyn if we don't follow up with anyone else after the surgery; but we don't need to follow up every year. Every other year would be just fine with her.

She felt her nevus, looked at it, checked her skin for satellites - and then said that she looks great! She said that Dr. Bauer is an excellent doctor who will do a fantastic job. She said that our plan is right on track & is happy with our choices. She did, however, make sure that we're having an MRI to check for NCM. I assured her that we're having it the 4th of Jan. She was very concerned about NCM & wanted to make sure that Brooklyn was developing properly & that things were going ok for her, which I assured her they were.

And that was it! She said Brooke looks great & she doesn't need to see her before the surgery unless she develops any nodules, black bumps/spots, or get's irritable & is showing signs of developmental delays. Other than that we can probably make an appt to see her again about a year after the surgeries are over.

Later that night we went to the Outback for dinner, then went back, packed up our stuff, & went to bed. Wednesday AM we got up & were on the road at 9am. I honestly could NOT have asked for a better child that day. She was absolutely perfect! She slept for 3 1/2 hrs so I was able to drive from Denver & not stop until we got to Casper, WY! There we got out, stretched, got gas, changed a diaper, got something to drink, & got back on the road. We stopped again once & then stopped in Billings, where we went to WalMart for a bit. I got her out of her seat so she could stretch & move around. We'd have made it home in 10 hrs but we had to stop at WalMart so we made it home in 11hrs! I'm still quite impresed! :o)

I came home to find my cookbook proof waiting for me! It turned out absolutely amazing. I'm VERY happy with it. I'm now proofing it one last time before I send it in to the company to be printed. They should be shipped by 10/26/10, which just so happens to be our anniversary! :)

Saturday, September 18, 2010

Let's Pack Up & Go...Like NOW!!!

Well where to start.... 
A week ago today I decided that Brooklyn's hair needed to be cut...bad! I'd already buzz-cut it before so I wasn't nervous at all. I got out the buzz-cutters & started cutting. I was thinking back to when I'd cut it before & I could have sworn that I'd used the shortest setting. Well after doing one run through with the cutters, I quickly realized......I was wrong! Oh my gosh!!! I couldn't go back so I just had to continue with what I was doing. I kept apologizing to her cause in the end her hair was SO short. It was so short she looked like a boy & I just cried & kept telling her how sorry I was! Well what's done is done, I thought. To make matters worse though, we had an appointment to get the girls pictures taken at Sears on Tuesday (just 3 days later).

So Tuesday came & I just ended up putting a bow on her you can't really tell all that much in the pictures that her hair is that short. The pictures turned out absolutely amazing, by the way. (See below.)

In the time after I'd accidentally cut her hair so short I just started looking at her nevus. I noticed that it's changing a lot. Some hair grows up, other hair grows down, or to the right & left. There's dark spots & light spots. The weirdest thing though is this very dark patch on her head. You can actually see it in the pictures. It's SO dark, but the weird thing is that the skin is actually very light! It's the hair that's super dark. But the hair on the rest of the nevus is lighter & then the nevus itself is darker.

Now, it's 100% normal for a nevus to change like that, but after looking at it for a few days I realized that I'd really like a pediatric dermatologist to look at it. I'm the only one that hasn't taken my nevus-owning child to see a dermatologist. It's a pretty important thing to do. They look at it, see how it's changing, & then follow up about once a year after it's removed to make sure that it's not turning malignant. (By removing the nevus it drastically reduces the risk of developing melanoma; however, it's 100% impossible to get every single cell during the removal process, so even though the risk is incredibly low, there's still a very small chance that it can turn malignant after the removal process is over.) So I thought "We need to see a dermatologist."

My big problem now though is who do we see? One of the best in the country is located in NYC. He actually spoke at the Nevus Outreach conference so he was on the top of my list. But how difficult to go to NYC now...and then every single year!! My next option was to go to someone in Chicago. If we have to go there for the surgeries anyways then why not see the derm there? But again, after the whole surgery process is over it'll be pretty hard to get to Chicago once a year. So the next best option is to go to Denver Children's Hospital. It's within driving distance...where I can drive there in 1 day and it can actually be a quick trip. So I asked around to some nevus outreach friends & then searched the Denver Children's website. I sent in an inquiry on Wednesday & was supposed to hear back from them on Thurs. I never heard anything so I said that I'll call them on Friday if I still haven't heard back. I got home about 1:15pm and there was a message on the was from the dermatology dept giving me the name of the best person for us to see. I called them RIGHT back & they took down all of our information & then said that she could see us on the 21st. I saw that it was a Tuesday & said that I'd take it. I needed to see if someone could work for me that day, but figured it'd be ok. So I put the appt in my phone & when I was looking at the calendar I realized that oh my gosh that's THIS COMING Tuesday!!! LOL!! I guess I didn't realize we were this far into September already!

So I hung up with them, called the lady that works for us and thank goodness she could!!! Then I called my co-worker to tell her what was going on, then called my friend to see if we could stay with her, then called & told Dustin, then my mom! Whew!! I was on the phone pretty much for a solid 2 hrs getting everything in order. I think it's meant to be b/c everything just fell into place. So then I started doing laundry & getting things together for our drive. I figured we'd leave Sunday, have Monday to hang out with Jennifer, then the appt Tuesday, and drive back Wed. I'm not nervous at all...except that I think it'll take a lot longer than 10 hrs to get there. :o(  I have a feeling I'll be stopping a lot to comfort/feed/hold Brooklyn. My mom can't go with b/c it's such short notice so it'll just be the 2 of us. We'll get it done...and we'll be fine...but I'm a little concerned that I'll have to stop a lot...which will make both Sunday & Wednesday LOOOOONG days!

I'll write again after we see the derm & let you know how it went! :o)  Keep us in your thoughts & prayers ESPECIALLY Sunday & Wednesday!!! Here's some pics from Sears that we got taken on Tuesday. They were Cali's 2 year pics & Brooklyn's 6 month pics!

Cali - 2 years

Cali Berlin

Brooklyn - 6 months

Brooklyn Marie

Cali & Brooklyn in their matching ducky outfits - thanks to Auntie Valerie!

Cali (2) & Brooklyn (6 mos) in their matching dresses from Gramma Vance

Cali & Brookie

Brooklyn & Cali

Wednesday, September 1, 2010

Jewelry Anyone????

We have a family friend who is doing something wonderful for us. She's a consultant with CookieLee jewelry & has generously offered to have a catalog party for us. ALL the proceeds go to Brooklyn's fund for all of our Chicago trips! How nice & thoughtful...I'm so blessed to know such great people.
Anyways, the info is below. My grandma is actually the "hostess" of the party so this letter is what she sent out to her friends & our family. Please let me know if you have any questions! Thanks for the consideration!!!

Dear Friends and Family,

Hi! This note is to let you know that I am hosting a COOKIE LEE JEWELRY CATALOG PARTY to benefit BROOKLY MARIE, daughter of Dustin and Merilee Vance. They are raising money for numerous trips they will be making to Chicago for a medical condition that Brooklyn has. The money will be used for travel expenses, insurance deductibles, hotel expenses, and anything else that their insurance won't cover.

For more information regarding Brooklyn's condition and what will be needed go to: If you would like to contact them please write to

Our Cookie Lee consultant, Deneva Henry, has graciously offered to sponsor this fund-raiser for Brooklyn. All of the profits from the Catalog Party will go to the fund to help with the extra expenses.

GOOD NEWS!!!!!!!!!!!!!!!!!!!!
No matter where you live you can be part of this party! Deneva has a website where you can see the jewelry. Go to to see the jewelry and to place an order. After ordering, it is important to e-mail her to let her know that you placed an order for Brooklyn's Fundraiser and give her your name so she will credit Brooklyn's account. .

This party will go until September 12, 2010 so please place your order before then. For any questions please let me know.

Thank you for your time and help with this fundraiser...and May God bless you.

Lois Osburn, Brooklyn's great-grandmother

Tuesday, August 31, 2010

I'M DONE!!!!.....(well for round 1, that is!)

It's official....I'm DONE with the cookbook! :o)  I got the email yesterday that they recieved my packet of stuff. And then today at about 1:15pm I hit "SUBMIT" & sent my recipes to them! What a relief. Tonight was the first night that I didn't have anything to was SO weird!
But today I did have school to do. School started for me yesterday. This is the first week of my LAST SEMESTER of school...yay!!!!!!!! Just 3 1/2 months from now & I'll have my BSN & be done with school forever. :o)
On another note, I got a letter back from Albertsons today. First off, I was shocked to even get a letter. But then...he put a gift card in there too. Just enough for a container of awesome. (Now let's just hope they have the formula when I go in next to get it!).....If you're wondering what this is about...check out the post titled: Dustin's Albertsons Experience.
I'll keep everyone posted on the cookbooks & when they'll be done. Next project: 1) planning the first Chicago trip & 2) working on the benefit dinner.

Saturday, August 28, 2010

Dustin's Albertsons Experience

Well today I wrote a letter! Haha! Ok let me explain...we started running low on formula so I sent Dustin to the store to get some. He came home with a little tiny can of it, instead of the big one that we usually get. This is what happened:
He went to get just 1 container but there was a girl in the aisle who literally put 20 of the exact same kind that we use in her cart. Dustin went to grab just 1 but she'd taken every last one of them! She saw that Dustin wanted that particular kind but she just walked off with her cart-full of that formula. So he had to get a super small can of it that was way more per ounce.
I wasn't mad...because it's just life. People need formula. But I was VERY frusturated. NO ONE needs 20 containers of it! Yes, I can totally see stocking up on it...and having like 4, or even 6 maybe.....but 20?!?! I felt sooo strongly about this & I really feel like there should be a limit to how many things of formula a single person can buy. Is this just me?
So I felt so strongly about this that I wrote a letter...a very well written letter, I might add (Thanks to know who you are!) I don't ever write letters. I may feel strongly about something but I'm not the kind that writes letters just to write letters! This, for some reason, just got to me. I'm not expecting to hear back, but we'll see. I'd just like it if there was a limit, that's all.

Gotta put my trust in the USPS!

And it's off!!!!!!!!!!

Today I mailed the huge packet of stuff to the book publisher! Now it's in the hands of the USPS. Today is Saturday & it should be there Monday already! Tuesday is the last day to do recipes so today I'm just finishing up some last ones: putting some more in, taking a few out...and then I can submit that too...and THEN I'll be cookbook free....well for a while anyways!
My proof should be here in about 4 weeks. I'm sure I'll go through that with a fine-tooth-comb. Once I OK it then they'll make them & ship them to me!


Monday, August 23, 2010

Secret Exciting News!!

Well I'm in the thick of typing recipes....STILL! The cookbook needs to be submitted by Tues, 8/31/10...which is just a week from tomorrow....AGH! I do have some exciting news...but I can't say anything yet!
I had a bit of a dilemma last night when I was typing in recipes. I was up to 557 recipes and I still had a HUGE stack to go...PLUS some in my email account. I counted up all that I had left to type & it was 365 more (NOT including the ones in my email)...that totals about 1000 recipes. I had 2 feelings: 1) overjoyed at how much love & support we have. I had so many people send me recipes that I just can't thank them all enough. But...2) I was sooo discouraged. That's too big of a cookbook. I called the cookbook company this morning & asked them if there was a limit. No, there's not...but a book of 1000 is not going to go over well, she said. I was told that I need to subtract at least 300 in order for it to be a "good" cookbook. She said that if there's 1000 recipes, it won't be easy to navigate through the book and people won't WANT to look through that big of a cookbook. So basically I have to lower the number of recipes to the absolute MOST. This is so sad for me because I promised everyone that gave me recipes...I said that if they gave me recipes, they'd go in the book. So now what? I could keep the book at 1000 recipes. But then I'd have to pay at least $3.00 more per book. Or cut it down to 700? What do I do?!
Well I've literally spent ALL day thinking it over and I DO have a plan. I can't say anything yet...but it's VERY exciting. Dustin actually said "YOU'RE A GENIOUS!" when I told him my plan. I'll "unveil" the plan stay tuned!!!!!!!!!!! ;o)

Wednesday, August 18, 2010

We're .com'mers now!

Well I decided to go "official" and we are now!! Kind of exciting! I also have an email specifically for cookbook stuff, Brooklyn stuff, surgery stuff, Nevus stuff, etc etc! It's: Of course I'm still using my other one, but I thought this would be a great way to keep stuff organized! Let me know if you have any questions.
Recipe inputting is coming along alright...tonight I just passed the 400 mark...and still SOOO many to go. I designed & organized the whole book yesterday & today, so it's pretty much ready to, except the recipes. I have 2 wonderful people proofing them while I type them all in. I have a feeling I'll be at the post office at 4:55pm on the 31st and I'll submit my recipes at 11:59pm that night!!! AGH!!! I need luck...and prayers too!! ;o)

Saturday, August 14, 2010

Hello - welcome to reality!

Today was a very hard day for me. I found out first hand what it's like when people point, stare, & whisper at my child.
We were out, just me and the girls, and there were 3 people not 3-4 feet away from us just standing there staring. I pretended not to notice them, but when I saw them pointing, looking at each other with their hands over their mouth so I couldn't see what they were saying, and whispering I couldn't pretend anymore. I looked right at them - square in the eyes and they all looked away. They said to each other "I'll tell you later" and then kept staring at Brooklyn. She didn't have a hat it was obvious what they were looking at.
Talk about breaking a mom's heart! They couldn't have made it any more obvious!
So what to do?...I asked myself. I was seriously about 2 seconds away from educating them...but I just couldn't do it. I was too shocked at what had just happened. You just have to be in the right frame of mind to inform strangers about Brooklyn...and I definitely wasn't there today. So I did what I thought was the next best thing to do...I packed up the kids & left. (Nap time is a great excuse!!)
I cried the whole way home. How could they do that? A part of me wants to hate them...but another part of me thinks that they aren't at fault because they really had no idea. There's something different about Brooklyn and they shouldn't have made such a scene, but I should have educated them.
I've always said that when Brooklyn has her tissue expanders in that we're going to be hermits. We're going to stay home & not go out in public where perfect strangers can stare & laugh at her. Also, there's no way we'll fly to Chicago for her 2nd & 4th surgeries when she has them in her head either. I've said that it's cause I won't allow the stares & points that will be coming her way. I knew it would happen, just not this soon! This is a PRIME example of why we won't be leaving the house and of why we won't be flying. I've learned today what it's like and it's not fun. And I refuse to have that happen again, if I can help the situation.
I know this world can be cruel, but I'm doing everything I can to protect my daughter. Of course it hurts me more than it hurts her, but it's still hurt, one way or another.
I mentioned this on Facebook and tears came to my eyes with the overwhelming response that I got. So much love and support is out there...all for us. It amazed me! I'm pretty much over the whole ordeal now. I'm more happy than anything...because of the wonderfully nice comments people left me about this. It's times like these that you really know you're blessed!

Saturday, August 7, 2010

The Photo Shoot!

The cookbook making is in full swing. I'm like the Mad Scientist...except I'm the Mad Typer!! The deadline for submitting recipes is a week from tomorrow and to be quite honest I thought I only had about 200-250 recipes...well I counted them last night. The total that I have is 460!!!!!!!!! Holy recipes! :o)  That's SO amazing, and they keep coming in. I MAY have to stop inputting at 500, but we'll see. I figured out how many I have to type per day in order to have a few days at the end of the month to spare....and that grand number is 23/day! Uh, yeah, talk about discouraged! I'm not sure if I'll be able to get that done. :(  Pray for fast, non-tendonitis, typing hands!!!!!!!
Anyways I've been majorly stressing about this much that I'm not doing any school work (oh yeah that's right...I'm in school)! I totally forgot about a test that was due last Sunday...and I have another one due tomorrow...uh oh! Well the #1 stressor, besides getting these recipes typed in, is the front & back cover of the book. It just HAS to be good! We didn't want to spend hundreds on a professional person so we decided to do them ourselves. Last night my superb sister-in-law came over with her mac-daddy of a camera and we spent hours having our own little photo shoot with Brooklyn! She took just over 130 pictures! I certainly didn't spend hours looking them over, but there are 5 that immediately caught my eye. I've asked 3 specific people and we all agree on which one will be the famous cover shot! I'm also going to have a bunch of pictures on the back, too. Sorry for disappointing...but the pictures will stay hidden until the book comes out! I know, I sorry..but I can't ruin the surprise! I'll definitely post picures that I'm not going to use though... :o)
So that's that. Photo shoot is less thing to stress about. Yay! Here are some pictures that I can share...that will not be used in the book:

Wednesday, July 28, 2010

Exciting News - WE HAVE A DATE!

Well the day that I never thought would come is is the day we found out when Brooklyn's surgeries will be. It's a little bitter sweet...partly because it's so real now. There's a date set and we know she'll be having the surgeries for sure now. But also partly because it's kind of exciting to know that it's actually going to happen. It's a little ways out there...January 6, 2011. But that'll give us time to get her flu shots in and time to enjoy the holidays without having to worry about expanders or surgeries or anything!
So the first surgery (where they'll insert both tissue expanders) will be January 6, 2011. The second surgery (which is the first nevus removal surgery) will be March 24, 2011 - exactly 11 weeks later.
The best part about this is that we'll be in Chicago when our new friends (the 2 families I met at the Nevus Outreach conference) will be there too! It's only been like 3 weeks since I've seen them, but I'm so excited to catch up...and excited for Brooklyn to meet Sully & Joshua. AND...Joshua's first removal surgery will ALSO be on March 24th! So Brooklyn & Joshua will get to hang out twice!
We're driving the first trip so we'll probably have to leave here on Jan 1, 2011 because she'll have her MRI on the 4th; then the pre-op appt on the 5th; and the surgery on the 6th.
So just 5 months and some days before her first surgery. Keep us in your thoughts and prayers!

Friday, July 16, 2010

Cookbook Sales - FYI!

FYI: You can begin pre-ordering your cookbook at anytime.
If you'd like to do this simply send a check to: The Brooklyn Vance Fund c/o Merilee Vance, 247 Ponderosa Lane, Lewistown, MT 59457. Make the check out to Brooklyn Vance Fund. If you'd like to wait that's fine too. Once I get it set up there will be a link on this Blog taking you to the order page. If you'd like to pre-order I'll send the book to you once it's done.

Also - I have gift certificates available for the cookbooks...what a great Christmas present! ;o)  You can also get these at anytime!

Cookbooks cost $20/each and are $5 total for shipping. If you live in or around Lewistown, MT the cost is just the $20, but if I need to ship it to you simply add $5!


Hello again!
Well the cookbook is in full swing...but I'm lacking one important! I've gotten some, but I need more! I'd potentially love to have at least 500'ish. So start sending. I'll put in every single one you send...whether it's 1 or 50! Send them to BY AUGUST 15TH!!!!!!!!!!! I can use any type of recipe: drinks, app's, main dishes, side dishes, desserts, salads, soups, etc. The sky's the limit!
Thanks in advance for your help!

Friday, July 9, 2010

Nevus Conference Day #3

Wow what another amazing day today! It started out like every other day...with a caramel macciatto from Starbucks. Then we got to hear our surgeon speak. He talked about the surgical managent of large & giant nevi. He said that the large and giant nevi have the greatest melanoma risk (where 4.5%-10% develop it). He likes to start early with surgery b/c there's excellent patient tolerance and the skin has great elasticity (especially in kids less than 3 years old). Some patients opt for observation only; then they have to be seen for yearly check-ups. One of his mottos is: "Always look at your greatest success and ask what you could have done better." He has a particular interest in tissue expansion, which is what Brookie will have to have, as stated previously. He typically keeps the expander in for 8-12 weeks. They are placed through an incision within the border of the lesion. They remove the drains 4-10 days later. Treatment of a nevus can typically begin at 6 months to be considered safe. As far as a head nevus goes...the head does mold when the expanders are in place; however, it goes right back to the correct place when it's taken out (usually within 1-3 months). The head expanders aren't small...he goes big. He had a LOT of pictures of expanders and before/after surgery pics. He showed a picture of an infant with 2 expanders in it's pretty much the EXACT same places that Brooklyn will have hers. I immediately got tears. We were sitting at the table with Dr. Bauer's staff and everyone at the table was really supportive of each other. It was good though that it was shown b/c I really needed to see it so that I know what to expect. That was the very first time I'd seen an actual picture of an infant with them in...and he's not kidding when he said that they go big...he doesn't go small with them. It's going to be an interesting process.
So next was a talk by one of the speakers from yesterday. Dr. Miguel Reyes talked about the Tissue Repository for CMN & Related Disorders.
Next was a Q&A session. They talked about how often an MRI should be taken if a patient has NCM. Also talked about general anesthesia and learning disabilities. They said that IF they get this, they get over it. Dr. Bauer has never had to give a blood transfusion to a patient and he's never had a complication during the surgeries.
Next was a talk by someone who was specializing in siblings of the patient with the nevus. She said that any issues a sibling has becomes more pronounced when a child has a medical condition. Said that the parents have a loss of the "fantasy child". Father's may feel left out so they had a special little session for the dad's. Makes me wish Dustin was here for that...I'd force him to go! She also said that we can't overprotect the child with the condition. We need to look for teachable moments when people tease them, as well.
After all the talks we had a little session where all the adults with a nevi sat up front while all the parents and everyone else asked them questions. To be honest I wasn't looking forward to this and we purposefully sat by the door so we could leave...but it was one of my favorite sessions. I had a few tears a couple times... It was really moving.
Next was a little off time and then a dinner/auction/dance. The banquet room was decorated SO nice! And the dinner was A-M-A-Z-I-N-G!!!!!!!!!!! The meat was either chicken or this fall-off-the-fork BBQ brisket. There was also green beans, corn, and mac & cheese. It was sooo great! Then they had about an hour-long dance for the kids. I didn't realize how many kids there were until then! The DJ was great. He played all sorts of younger-type songs, plus some parent/child songs. Then there was an auction (no, not a real auctioneer) and a silent auction.
The highlight of my night though, by far, was meeting Matt Luke in person and getting his autograph. (He used to play for the Dodgers, Angels, and another team...and he currently works for the Dodgers.) I introduced myself and told him that my 4 month old has a nevus on her head. He asked what her name is and I told him. Get this.... He also has a daughter Brooklyn...ALSO named after the Brooklyn Dodgers! Coincidently I had my Dodger's shirt on, so I totally explained how big of a fan I am!! HA! I wanted to score lifetime season tickets, but I settled for the autograph! ;o)
I can't believe the conference is already over! My supposed to be R&R time was non-existent! It rained the entire time I was here...and it finally warmed up in MT...figures! But that's alright. I'm very glad I came. I did say bye to Pierre and got a huge stack of brochures so I can hand them out. I also got a copy of the whole surgery plan by Dr. Bauer that's put together in a booklet.
So I go home tomorrow. I hope the flights are good...

Thursday, July 8, 2010

Nevus Conference Day #2

WARNING: This post may be deep!!

Today we had the official first full day of the conference. First we had Nevus 101 Part 1! Dr. Ashfaq Marghoob spoke about CMN (Congenital Melanocytic Nevus...which is the long name for a nevus). He talked about the size of them: Small, Medium, Large, Giant. They will grow in proportion to the child. For example, Brooklyn's nevus was 9cm x 10cm at birth. At 2 months it was 10cm x 11cm. I need to measure it again b/c I'm sure it's bigger by now. The risks of having a CMN include: melanoma, NCM (neurocutaneous malanocytosis), tumors, and cosmetic issues. 1:100 births have a small CMN, 1:1000 births have a medium; 1:20,000 births have a large; and 1:500,000 have a giant. CMN's form in the neural crest in the cells at a very early gestation. There is a melanocytic cell in the neural crest that goes thru the meninges in the brain and spinal cord then to the skin and that's when the skin gets pigmented. The lightness/darkness is dependent on how far towards the skin surface it is. If it's ventral then it goes on the neural route so it'll be larger and thicker. The gene that they're talking about is the C-met-proto oncogene. There COULD be a genetic component, but for it to manifest is a total chance occurrance. Symptoms of a CMN include: decreased sweating, pruritis (itching), exzema, and skin fragility. 1/3 of Large CMN's become lighter. Often scalp nevi's will disappear, BUT the nevi cells are still they still do need to be removed. A large CMN has a 1%-10% risk of becoming malignant...which means that 90% won't turn cancerous. 7% of the patients studied got melanoma. 3% of people who had a truncal nevus got melanoma and just 1% of people who had a head/limb nevus got melanoma. Most turn cancerous by age 5. NCM is neurocutaneous melanocytosis. This is when deposits on the skin go to the brain. Of the people who have a CMN, 5%-22% develop NCM. The risk is higher if they have a lot of satellites. Satellites are like mini-CMN's and they can occur all over the body. People can have anywhere from several to thousands. The larger the nevus, the larger the risk is of developing NCM. 1% of people with head nevi's get NCM and 0% have died from this. They have a 5x greater risk of getting NCM if the nevus is on their spine or they have more than 20 satellites. The number of satellites determines the risk, NOT the location of the satellites. For the risk of melanoma: the size - the larger the nevus the greater the risk; torso has a greater risk; satellites aren't important (no melanoma has ever been reported in a satellite). For the risk of NCM: the size - the larger the nevus the greater the risk; location is not important; the greater the number of satellites the greater the risk. 76% of patients prefer a scar over the nevus; 74% believe that scars are more socially acceptable; and 24% regretted ever having surgery. Surgical excision of the nevus doesn't reduce the risk of melanoma to zero, but it significantly decreases the risk. Residual cells remain and melanoma cells can develop from these.
Nevus 101 Part 2: Veronica Kinsler from the Great Ormond Street Hospital for Children in London spoke next. She answered a very important question: Was it something I did to cause my child's nevus? Answer is NO! A positive correlation of mom's with nevus babies include: pre-eclampsia, threatened miscarriage, severe nausea & vomiting, and smoking. I never had any of these myself! The size of the nevus depends on how early in gestation the change happend with the neural cells and the melanocytes.
Next speaker was Yasmin Khakoo, MD from the Memorial Sloan-Kettering Cancer Center in NY, NY. She said that 7% of kids with a large CMN have NCM. Neurological complications from NCM include: hydrocephalus (water on the brain - caused by an inability for the brain to absorb water like it should b/c the melanocytes are in the way, basically), seizures, developmental/behavioral issues, cranial nerve issues, and spinal nerve root/cord compression. Recommends an MRI before 4 months of age with a GRE sequence (gradient echo). If a child gets CNS (central nervous system) melanoma that is fatal....and also rare.
Research Update Part 1: Dr. Sven Krengel - dermatologist from Germany. Classifies Giant CMN as greater than 1% of body if it's on the head/face - which Brooklyn's is. Laser and dermabrasion are not recommended treatment options for nevi's.
Next speaker: Dr. Miguel Reyes from the Children's Hospital in Pittsburgh and he talked about the role of the pathologist. There's diagnostic or research pathology. 3 types of nevi's: epiderman, melanocytic, and connective tissue.
Research Update Part 2: Veronica Kinsler again about research done on facial features of kids with CMN. Very interesting! Children with congenital menanocytic nevi's DO look alike. This is a confirmed, extended study done in England. They all have a broad, round face, wide forehead, eyebrow changes, fullness around the eyes, short nose, broad lips, full cheeks, long/deep philtrum, prominent lower lip, broad face, and are attractive. There's question whether or not to call this CMN Syndrome.
Next speaker: Heather Etchevers spoke about Nevus Development, Molecular Genetics, & You.
Next speaker: Bernard Wehrle-Haller from the Univ of Geneva, Switzerland spoke about Controlling the Replication of Melanocytes.
WHEW! Very exhausting, informative day!

Wednesday, July 7, 2010

Nevus Conference Day #1

Today was a crazy day! I have a tendency to ramble...HA! So I'm going to try my hardest to keep it simple. I only got 3 hours of sleep last night so I was really tired...but wide awake when I got up at 6:45am b/c I was so excited and very anxious. I went to the lobby and got my little packet of information at 8am. I went in and talked to the lady about the consultations. She said that our plastic surgeon (Dr. Bruce Bauer) wasn't going to get in until 5pm so the consult would be Thurs or Fri. They would text me when my appt time was. So I had until 7pm tonight to do nothing!
I came back to my room and rented a car online for the day. I took the hotel shuttle to the airport, then took the rental car shuttle to Enterprise, where I got a car for the day. I got a navigation system and had written down addresses to a few places.
First I went to the 6th Floor Museum - the place where Oswald shot JFK. It was such a great, informative museum. It was SO much better than I thought it'd be. Phones had to be off. When I got done I checked my phone and I had a text saying that my plastic surgery consult would be at 1:30pm!! was 12:45pm and I was about 30 mins away (in a strange city that I'm not used to)! So I ran across the street, took pictures, ran back to the car, and drove like the dickens back to the hotel. I was about 10 mins away (and it was about 1:10pm) when I got a call asking to move my appt back an hour! I was too far away from the museum to go back. I'd planned on eating lunch at the Hard Rock Cafe after I was done at the museum b/c it was right around the corner. (If you have read all my Europe e-mails from 3 years ago you'll know how disappointed I was that I didn't get to go to the HRC!!!) So I just decided to come back to the hotel. I freshened up and reviewed my questions for Dr. Bauer.
Meeting him was a big deal to me. This is the guy who's going to be operating on my child at least 5 times! I was actually nervous...and anxious! I met his 2 nurses, his scheduler, and him. I was only in there for 15 mins b/c we'd already communicated by e-mail and telephone. So he'd already told me the plan. I had a few questions for him that he'd answered; and I gave him a few more pictures. He said that we can start around November, or if we wanted to wait till after the holidays that'd be fine too. I'll have to talk to Dustin & see what we wanna do.
I asked if we could wait a while or if he recommended starting now. He said there's no benefit in waiting so we might as well start. I also asked about getting an MRI to check for NCM (neurocutaneous melanocytosis). I'll explain what NCM is later; but he said that yes, we do need to do that, but it's not urgent. Each expander surgery will be about 1-1 1/2 hrs and each removal surgery will be about 2-3 hours. His scheduler will e-mail me with surgery dates and we'll just schedule with her and then go to Chicago for them! I also asked about hair growth. He said that because he's moving the scalp from the back to the front that I'll be amazed at how much I won't be able to tell that she even had a nevus. He traced an area on his own head of where Brooklyn will have scars. She'll have one behind her right ear, one along the right hair line, and one across the top of her entire brow line...fully across each brow. I need to still ask him about satellites showing up. (I'll explain that later, too.)
When I was done with my appt it was just 2:45pm so I went to a huge mall... It had a carousel and an ice skating rink in it! I got the girls a few things at the Disney Store (60% off sale I couldn't resist), then ate at Chick-Fil-A, returned the car, came back to the hotel, and went to the welcome reception that started at 7pm.
Something amazing happened tonight... When I was on the shuttle from the airport back to the hotel I started talking to a man (Pierre) and his 8 year old son (Gabriel). He answered a lot of questions I had and I answered a lot of questions he had. We talked the whole way back to the hotel. He asked how old Brooklyn was and I told him that she is 4 months old today. He was shocked b/c his son was 4 months old when they went to their first conference. We continued to talk and then went our separate ways when we got back to the hotel.
At the welcome reception tonight a lady went up on stage and introduced the outgoing director (or something like that...he was very high up at Nevus Outreach Inc) and who walked up on stage...but Pierre!! He gave a speech about how much NOI has changed his life and then said that he was just talking to a lady (Kathleen???) who he was on  the shuttle with 8 years ago when his son was only 4 months old. Then he said that he was on the shuttle today with a mom who has a 4 month old. He kept saying how much he'd hoped that NOI would change my life too. He mentioned our conversation numerous times during his speech... Amazing! That's more than a sign if you ask me! :o)
Anyways, I've gotten to meet a few people that I've "met" online in the Yahoo! NOI Support Group. It's so great to be able to meet them in person, ask them tons of questions, answer questions, and just socialize and not have to explain what Brooklyn has! I never in a million years would have met these great people if Brookie wouldn't have had this nevus. I 100% firmly believe that the Lord chose me to be Brooke's mom because he knew I could handle this. That's right... He.Chose.ME... and I'm so blessed!

I'm here!!!!!!

WOW what a trip to Dallas! I left home at 10am, drove to Billings, got on the plane....what a bumpy ride out of Billings and into Denver. Once we got to Denver I had just under 2 hours until my next plane. Well 2 hours turned into 6 because instead of leaving at 5:40pm we didn't leave until 11:15pm. That put us landing at 1:45am so I didn't get to my hotel until 2:30am and didn't get in bed until 3:45am! Holy canoly. I hope 3 hours and 15 mins is enough sleep for me because I got a busy day ahead of me!
Well at least with the super long wait I did get almost 1/2 of a book read! ;o)
The flights were horrible, to say the least. Thank the Lord that he got us here ok because I was sweatin and gripping the armrests like it was cool!

Friday, July 2, 2010

Yahoo! Support Group

I was added to the Yahoo! Nevus Outreach Inc Support Group. What a God-send this group is! I've "met" so many wonderful people. A lot of them are moms who are in the same boat I'm in. I've gotten a lot of ideas, asked questions, answered questions, told our story, listened to other's stories, etc etc!!! It's amazing. I've met some people that are going to the conference as well, so I'm looking forward to meeting them in person. One lady in particular is also going solo to the conference. I got the idea of this blog from her. She also did a cookbook as a fundraiser for all of her trips to Chicago, as she is also using Dr. Bauer for her son's nevus. I loved the cookbook idea so we're going to be doing the same thing! Don't be shocked when I hit you all up for a recipe for Brooke's cookbook! ;o) I've also thought about contacting the Children's Miracle Network or doing the Little Caesars Pizza kit fundraiser. Cookbook is #1 though right now! Send me your recipes to: and you'll be published! ;o)

Monday, June 28, 2010

3rd Opinion and a Phone Call -- "The Plan"

This morning I spoke with Dr. Bennett. I told her everything that was going on. My biggest thing was that I didn't want to step on her toes or go above her with what I was doing. I didn't want to have a different plan than she had. She said that's not the case, that a lot of the time it's the parents that do all the research, and that she's fine with what I'm doing. Whew!
Tonight I got a call from Dr. Bauer. He gave me the "plan of attack", so to say. This is what he had to say... The biggest thing was that he said he can remove it. He will do the tissue expanders to replace the forehead with normal forehead and the scalp with normal scalp. The first surgery will be to put in the tissue expanders. He will do 2 to start off with. One will go in her left forehead and go towards her scalp. The other one will go behind the nevus,  above her right ear, and towards the back of her head. He said that the forehead is the tricky part. He said that there will be a scar at the brow level and at the hairline. He'll put her on antibiotics for a few days after inserting the tissue expanders, to prevent any infections. Then while she has the expanders in I just need to watch for signs/symptoms of infection, and if I see any then he'll put her on antibiotics again.
The second surgery will be 11-12 weeks later and that will be removing part of the nevus. We'll wait 4 months and then do it all over again, but this time only have 1 expander. Then 11-12 weeks later the 4th surgery will remove the rest of the nevus. The 5th surgery will be a touch-up procedure that is reconstructing/refinement of the brows (since he thinks that one may be higher or lower than the other) and making everything (hairline, brows, forehead) symmetrical. Believe it or not he said that this last surgery is out-patient.
He said that after the first set of expanders are put in we'll have to stay in Chicago for 8-10 days and then go back in his office so his nurse, Susan, can teach us how to do the expanding. (This is where Dustin get's a little ticked off at me...He doesn't understand why I don't just tell them that I'm a nurse! Well I'm not a nurse when it comes to my kids. I don't want them assuming I know something. I don't want them to talk to me like I'm a nurse...I want them to talk to me like I'm a mom.) They'll give us all the supplies to do all the expanding at home after that.
Another thing he mentioned was how bad she'll look when coming out of the expander surgeries. He said that she'll be bruised all over, especially down into her right eye. There will be 1-2 drains from each expander. He said that those will be in for a few days to a week and usually the parents take them out.
I asked when we can start this process. He said that typically when he sees a newborn then they start at 6 months, but because he's "seeing" Brooklyn at 4 months, then we can start at about 8 months, or whenever we're ready. Dustin wants me to ask him at the conference if we need to start now, or if we can wait a year or so to save up enough money for at least 5 trips to Chicago. I'm betting that he'll suggest starting sooner rather than later because it grows as her head grows. At birth it was 9cm x 10cm and when we saw Dr. Grosso at 2 months it was 10cm x 11cm. So it may be even more surgeries if we wait just a year. I'll ask him though and see what he says.
I asked him what about waiting until her fontannelles and sutures close in her head and he said theoretically that's a great idea...IF they closed at a year...but they don't! He said that the head does do a little molding when the tissue expanders are in, but once they're taken out the head goes right back to where it belongs. He said he's done over 100 on the forehead/scalp area and it's all turned out great.
After getting off the phone with him and talking to my mom and Dustin I have a few more questions that I'll ask at the conference, such as what about getting an MRI to check for NCM? (NCM is Neurocutaneous Melanocytosis - which is melanocytes in the central nervous system that can cause developmental delays or seizures. It affects about 33% of people with a large or giant nevus.) Also, do I need to worry about satellites appearing? What will her hair growth be like after the surgeries?
I'm anticipating from start to finish to be about 15-18 months.