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Old 06-30-2009, 10:26 PM   #16
StefaniLyn
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Originally Posted by Corrine 1973 View Post
Yeah for dates, and what could be more magical than Disney at Christmas time.

My son is also on Creon, unfortunatly his test for Cystic Fibrosis came back positive. I am hoping that Bella will be able to be taken off the enzymes or at least wont have to take so much in the near future. Liam is currently taking 2 Creon 10's with every meal and 1 with snacks. It's a bit of a pain, but you learn to get used to it and and always have a bottle of pills in your purse in case you stop somewhere for a snack. FYI- I got advice from someone who told me that their enzymes got wet while they were in the park and therfore ruined, I am going to make sure his are in a water tight container.

I also see that you are in Wisconsin. I am at the northern end of Illinios, about a half an hour from Kenosha. Have you guys ever done the Renaissance Faire? I have been part of the cast there (took off last couple of years because of kids) and am going to be there part time on Sundays. It is my understanding that I am able to get discount tickets for $10, so it you want to go let me know and we'll work something out.

Can't wait to hear more!!!!!

By the way I am just loving your PTR and your style of layouts. So creative!!!
Sorry to hear about your son's CF dx. We will definitely keep him in our prayers. Bella (5yrs, 32lbs) takes 3 Creon 10s at 4 meals a day. She has one milk snack per day with no pills. We only see minimal symptom relief even with the high dosage. I have learned to carry meds with us everywhere as you do. Unfortunately, with Bella's eating disorder and history she can only eat pureed foods and cannot swallow pills. We have to open the Creon and put the granules into her food. It's a pain in the butt but we're learning to live with it.

Thanks for the tip on keeping them dry - I notice how quickly the capsules mush when wet and I'm sure they'd be useless if moisture got into the bottle. I will put waterproof container on our packing checklist.

We have never been to Renaissance Faire before but it sounds amazing! You are so generous to offer your discounted tickets and I may take you up on that. I need to look at our schedule for the rest of summer but hopefully I can find a day that works! It would be fun to meet up with another Wish-Tripper!
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Old 06-30-2009, 10:38 PM   #17
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I agree, it would definatly be great to meet another Disfamily exspecially one that understands some of the things my son is going through.

Tell Bella, that while at WDW she gets to meet the princesses, At the Ren Faire she gets to meet a Queen. And I personally know her. Not to mention all the other lady's in big dresses, one of which would be me. Hope this works out. Opening day is July 11th and it is open on weekends until and on Memorial Day. Like I said I will be there on Sundays except for July 26th. PM me and we'll figure things out.
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Old 07-01-2009, 09:45 PM   #18
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Originally Posted by Corrine 1973 View Post
I agree, it would definatly be great to meet another Disfamily exspecially one that understands some of the things my son is going through.

Tell Bella, that while at WDW she gets to meet the princesses, At the Ren Faire she gets to meet a Queen. And I personally know her. Not to mention all the other lady's in big dresses, one of which would be me. Hope this works out. Opening day is July 11th and it is open on weekends until and on Memorial Day. Like I said I will be there on Sundays except for July 26th. PM me and we'll figure things out.
excellant! I havent been to Ren Fair in ages - I'm thinking maybe dd might like a trip - I'll be sure to sport a Lime Green Mickey head!! Thanks for the info!
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Old 07-01-2009, 10:01 PM   #19
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excellant! I havent been to Ren Fair in ages - I'm thinking maybe dd might like a trip - I'll be sure to sport a Lime Green Mickey head!! Thanks for the info!
PM me when you know when you are coming, I will be there on Sudays (I know I am repeating myself.) You can meet me at the nobles glade during queen's feast or audiance with the Queen. Just ask for Lady Hoby.
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Old 07-01-2009, 10:14 PM   #20
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I just found this TR! I used to be a CM at WDW and an Angel (volunteer) with GKTW. I'm now with MAW Kansas City. If I can answer any questions- let me know!

I'm really glad that you all got the dates you wanted. Hopefully you will have a truly magical wish trip!
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Old 07-03-2009, 12:21 PM   #21
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Quote:
Originally Posted by Corrine 1973 View Post
I agree, it would definatly be great to meet another Disfamily exspecially one that understands some of the things my son is going through.

Tell Bella, that while at WDW she gets to meet the princesses, At the Ren Faire she gets to meet a Queen. And I personally know her. Not to mention all the other lady's in big dresses, one of which would be me. Hope this works out. Opening day is July 11th and it is open on weekends until and on Memorial Day. Like I said I will be there on Sundays except for July 26th. PM me and we'll figure things out.
We're in Indiana right now visiting my in-laws but I will check my schedule when we get home. The girls would love meeting a queen! Do most Faire visitors dress up?

Quote:
Originally Posted by Sandy321 View Post
excellant! I havent been to Ren Fair in ages - I'm thinking maybe dd might like a trip - I'll be sure to sport a Lime Green Mickey head!! Thanks for the info!
I need to get me a Lime Green Mickey Head too!

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Originally Posted by Eeyores Butterfly View Post
I just found this TR! I used to be a CM at WDW and an Angel (volunteer) with GKTW. I'm now with MAW Kansas City. If I can answer any questions- let me know!

I'm really glad that you all got the dates you wanted. Hopefully you will have a truly magical wish trip!

Thanks so much for your offer - I'm sure I will have pleanty of questions as we go through the planning process! I am so excited about our dates as well but waiting is going to be soooooo hard!
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Old 07-03-2009, 02:39 PM   #22
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Hello! We are in Chicago, so not terribly far from you. My son's MaW journey has just begun, but there is a good chance we may end up in Disney around the same time. We are looking at dates in November and early December. It will be a couple weeks before anything is decided. My children will be 6, 8, and 11 by the time we go. It would be fun to meet another family from the midwest.

Out of curiosity, are you a writer by profession or by hobby? I ask because your PTR is so enjoyable and easy to read. You have a gift!
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Old 07-06-2009, 08:37 AM   #23
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I've been waiting to find out your dates!! How exciting that you'll be there for Christmas!!
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Old 07-07-2009, 09:58 PM   #24
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I'm hooked!!


Love the pictures!! Such darling Princesses! Wow mom - I'm in awe! PTO, School Board, and mom to 3 girls!!

(and also near the IL northern border!! Neighbors!!)
Hello Neighbor! I just passed through IL on my way home from Indiana this morning - thankfully Chicago wasn't a parking lot! Sorry I accidentally missed your post at the bottom of the first page earlier - thanks for joining me on my pre-trip report! Right now my girls are my "career" until they get a little older. I've made it a point to become as involved as I possibly can be (hence the PTO, board of education, etc) until they are a little older and I get a real "job"

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Originally Posted by MomTo4+more View Post
Hello! We are in Chicago, so not terribly far from you. My son's MaW journey has just begun, but there is a good chance we may end up in Disney around the same time. We are looking at dates in November and early December. It will be a couple weeks before anything is decided. My children will be 6, 8, and 11 by the time we go. It would be fun to meet another family from the midwest.

Out of curiosity, are you a writer by profession or by hobby? I ask because your PTR is so enjoyable and easy to read. You have a gift!
It would be wonderful to meet another Wish Family while in Disney if we go at the same time! My girls will be 5, 8, and 10 - almost the same age as your kids! The way I see it, early December will be perfect because we get to see MVMCP, Osbourne Family Lights show, and the weather will be great for the kids. Is November or December your first choice? Let me know when you get your dates!

Thanks for your compliments on my writing. I do not do any professional writing or consider it a real hobby for me. However, I have found writing about my journey through parenthood with a special needs child to be somewhat theraputic. In fact, during some of our most difficult and stressful moments I would journal on Bella's Caringbridge website www.caringbridge.org/visit/isabellagriggs and the responses I recieved via emails, guestbook entries, and prayers have been incredibly uplifting. Writing for me has been a way to connect with other special needs families and communicate with other family and friends. I just write from my heart most of the time.


Quote:
Originally Posted by HeatherSue View Post
I've been waiting to find out your dates!! How exciting that you'll be there for Christmas!!
Thanks for joining me on our PTR HeatherSue! We're excited to go at Christmastime too! BTW, I'm a big fan of your Trip Reports. Your Dueling Trippies with your sister last year had me ROTFLMAO on many occasions!
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Old 07-07-2009, 10:54 PM   #25
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I am glad Chicago wasn't a parking lot for you! I understand just what you mean. It gets crazy near us, especially when there is a Cubs game! I haven't pinned down my first choice for dates yet. I want to talk to Deyki's wish granters about it when they come next week. Deyki says his first choice is to go tomorrow! I think I am leaning towards December. Maybe we will see you there!
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Old 07-13-2009, 12:29 AM   #26
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Chapter 5 - Racing Sausages meet Mickey Mouse

Today, the Wisconsin Chapter of Make A Wish celebrated it's 25th birthday. Now that we are the proud owners of an official "Wish Kid" our family was invited to join other Wish Kids and families to celebrate at a Milwaukee Brewer's baseball game and tailgate party. The kids were super excited all week for this event and I honestly didn't know what to expect as we'd never been to any "Wish" function before.

The day begun with a very emotional moment. As we arrived at the MAW tailgate party, we were handed signs and told that Wish Kid, Sam, would be arriving soon. Sam's wish was to sing the national anthem at a Brewer game and today was his big day. So with signs in hand, we eagerly awaited Sam's arrival. Here's Bella holding a sign for Sam.


Sam's limo pulled up just a few moments later and he stepped out onto a RED CARPET to dozens of screaming MAW families, volunteers, as well as some incredible Star Wars characters. Flashes popped and the crowd chanted "Sam, Sam, Sam, Sam!" The moment brought tears to my eyes. A very proud and amazed young Sam was treated like a celebrity and you could just tell he was basking in his glorious moment! Doesn't he just look like he's on top of the world? He's only 5, but I hope he remembers that moment for the rest of his life, cuz I know I will.
After watching Sam's arrival, our family enjoyed the amazing experience of the MAW tailgate party. Bella and Kennedy got their face painted (the best face paintings I've ever seen). We ate some delicious hot dogs, brats, chicken, etc. An amazing artist drew a charicature (sp?) of the three girls. There was a bounce house and inflatable obstacle course. There were so many activities and so much good food we didn't get to all of it!



Brewer Corey Hart stopped by too and donated $10,000 to the Make A Wish Foundation! And you'll never believe who else stopped by - MICKEY MOUSE! Unfortunately, we missed seeing him and didn't even know he was there until we saw him at the tailgate party on the news tonight! I was so bummed when I saw Mickey hanging out with the other wish kids - I can't believe we completely missed him!



A photo-op of all the Wish Kids attending the game today. Isabella is the one in blue. HA! Just kidding - she's in the front row, near the center. She has the big white bow in her hair and is one of the smallest kiddos.


After the amazing tailgate party, we went to the Brewer game.


We first watched Sam get his wish and sing the national anthem. It was another tearful moment for me. Many wish kids got to participate in special events during the game as well.


Bella started feeling ill right at the beginning of the game. She gets overheated so easily, especially after eating, which she had done shortly before the game. We were sitting directly in the sun and it was in the mid 80's. About 1/2 hour into the game, Bella was sweating profusely and looking pale. So I quickly took her up to the deck into the shade. I lifted up the back of her shirt and laid her on the very cool, smooth concrete. She perked up after about 10 minutes of laying there. Then I took her to the bathroom and soaked her shirt with cool water. After that, we took turns taking the girls up to the deck every half hour or so to keep them cool.

During one such walking trip, Bella and I happened across the famous Racing Sausages hanging out on the lower level. She was so excited to get her picture taken them. We saw all except for one. Is it wrong that I was excited about this not because she loved the Sausages so much, but because I imagined her running up to characters at Disneyworld with that same enthusiasm? I guess I have a one track mind . . . . Here's Bella with the Racing Sausages. FYI: Hot Dog won today!
As we watched the game, dripping with sweat and constantly encouraging the girls to drink more water, I kept thinking how happy I was that we changed our choice of dates from August to December. Bella especially would have been absolutely miserable if we were to take her Wish Trip during the extremely hot August weather. She will do much better in December.

We stopped for some souveniers towards the end of the game as well.


Even though the Brewers lost 7 to 4 to the Dodgers, they rallied towards the end and were so close to tying it up! It was a great game and we had a wonderful time.


Last edited by StefaniLyn; 07-17-2009 at 04:18 PM.
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Old 07-13-2009, 11:00 PM   #27
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Thanks for sharing your fun day! I got tears in my eyes reading about Sam and his incredible welcome. That picture captures such joy and pride. You're, right - he'll never forget that!
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Old 07-14-2009, 09:11 AM   #28
Corrine 1973
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Originally Posted by StefaniLyn View Post
We're in Indiana right now visiting my in-laws but I will check my schedule when we get home. The girls would love meeting a queen! Do most Faire visitors dress up?
A lot of people do dress up but even more just wear their normal cloths. It's all up to you. We have people in princess dresses, prom dresses, xena and hercules type outfits, in close to our court costumes, and believe it or not we have even had a few Klingons roaming around. Can't wait to hear your plans, and looking foward to possibly meeting your family.
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Old 07-17-2009, 03:19 PM   #29
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Chapter 6 - A History of Bella - Why this Wonderkid is getting her Wish

Some of you may be wondering why Isabella is getting her Wish and going to Disneyworld. As I mentioned earlier, Make A Wish grants Wishes to kids who have been diagnosed with a life threatening medical condition. Isabella acually has 5 such diagnoses. Warning - the following post is filled with medical jargon and terminology. There are also photos in this post that are not for the easily squeemish. I apologize in advance. The short story is, Bella has 5 diagnoses that qualify as "life limiting" and therefore qualify her for a Make A Wish trip to Disneyworld. Her diagnoses include esophageal atresia, congenital heart defects, epilepsy, celiac disease, and pancreatic enzyme insufficiency. For those of you who want to be spared the gory details, CLICK HERE to skip to the next post. And for those of you who would like to know more, continue reading for the long verson of the History of Bella.

The first diagnosis for Bella came before she was even born. Bella was born 4 weeks early and weighing just over 4lbs. Before birth, we knew she would likely have a condition called esophageal atresia (EA). This basically meant that her esophagus was not attached to her stomach. Her throat ended in a pouch instead of continuing to her stomach. There are several types of EA, and Bella's was considered "long gap type c". After her birth, Bella was immediately taken to the NICU at Children's Hospital of Wisconsin. When she was less than a day old, she had surgery to place a g-tube in her stomach to feed her. For the next 2 months, she remained in the hospital, trying to grow big enough and strong enough for another surgery. Eventually, an incredible surgeon was able to connect Bella's esophagus and stomach. She was discharged from CHW after 84 days in the NICU. Even after the surgery to repair her esophagus, Bella struggles to swallow and has very bad acid refulx. Without immediate medical intervention and multiple surgeries after her birth, esophageal atresia would have been fatal.
1. Bella at one day old (holding Daddy's wedding ring) 2. Bella 2 months old - just before a big surgery

1. Isabella after her surgery 2. Bella before going home (84 days old)

Bella's second diagnosis also occurred before she was born but didn't become problematic until she was about a year old. Bella was born with 3 holes in her heart. She had an atrial septal defect, a ventricular septal defect, and a patent ductus arteriosis. The VSD closed on it's own before Bella was 6 months old. However at around 10 months, Bella went into congestive heart failure. Essentially, with the remaining 2 holes in her heart, Bella's heart was unable to keep up with the demands of her growing body. When she was 13 months old, Bella underwent open heart surgery to repair a quarter-sized ASD. To this day, the PDA remains but it is not causing her any problems and she has no restrictions because of it.
1. Bella just after open-heart surgery 2. 3 days post-op - her recovery was amazing!

Just 2 days before our very first Disney trip with the girls, Bella threw us all for a loop. About 10 pm one evening my husband and I checked on Supposed-to-be Sleeping Beauty Bella and found her in the midst of a grand mal siezure. After a 911 call and 2 ambulance rides, we found ourselves back at Children's Hospital. The following days were filled with MRIs, EKG, EEGs, and every other medical acronym you can imagine. Despite it all, the amazing staff there discharged Bella just 18 hours before our Disneyworld vacation (and I still hadn't packed!). Our first trip to Disney with the girls was incredible but I was on edge the whole time. Bella was seizure free while at the World, but began to have more once we returned. Shortly thereafter, she was diagnosed with epilepsy. After experimenting with several medications we finally found one that stopped her siezures. I'm happy to say that she has now been siezure free for over 2 years and we weaned her off medications last fall!
Here's Bella having one of her many EEGs.
In December of 2007, Bella was scheduled for a day surgery and routine endoscopy. The surgery did not go well and Bella ended up being hospitalized for a week. Even worse, when results of the endoscopy came back, the Doctor surprised us with yet another diagnosis. Isabella's biopsy results were positive for Celiac Disease. Celiac is a digestive disease that interferes with the absorption of nutrients. Bella cannot eat any foods that contain wheat, rye, barley or oat (or other forms of gluten). If she does ingest even small amounts of gluten, her body will react by destroying the villi in the small intestine, causing malnourishment and other illnesses.
Here's Bella during that hospitalization - she has hospital bed-head here!

During all these hospitalizations and illnesses, Bella was completely tube fed. Bella's team of doctors at CHW tried twice to teach her how to eat during an inpatient feeding program but they were unsuccessful. In the summer of last year, Bella spent 8 weeks in a hospital in Baltimore. The feeding program at Kennedy Krieger Institute successfully taught Isabella how to eat pureed foods and drink liquids. She did so well that in October of last year, her tube was removed for the first time in her life!
Bella during her summer in Baltimore at Kennedy Krieger Institute

Unfortunately, eating regular foods have proven to be exceptionally difficult for Bella. After being extremely ill for 6 weeks and losing a lot of weight, she was again admitted to the hospital in February of this year. This time, test results revealed she had pancreatic enzyme insufficiency. Her pancreas does not secrete enough enzymes to break down food. Thus whenever she eats, Bella gets very sick and lethargic, sweaty, tired, and nauseous. It has made mealtimes very difficult as she simply doesn't want to eat and feel sick. Here she is feeling better in the hospital. She hadn't eaten for nearly 2 days at this point and was feeling great!

In total, Bella has spent over 200+ days overnight in the hospital. She has had many other surgeries as well as dozens of procedures, tests, etc. She also has other diagnoses that aren't life threatening including bilateral mild hearing loss, microcephaly, platelet function disorder, and a few more I'm sure I'm forgetting. Her latest diagnosis in February was pretty much the straw that broke the camel's back. I decided during that hospitalization that Bella really was deserving of a Wish and despite my previous restraint (worrying that Bella's Wish would prevent another, sicker child from getting a wish), I finally submitted her name to Make A Wish (and secretly crossed my fingers that she would wish for a Disney trip!)

UP NEXT:

CHAPTER 7 - LET THE PLANNING BEGIN! COUNTDOWNS, MATCHY-MATCHY DEBATE, AND MOVIE NITES

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Old 07-17-2009, 04:12 PM   #30
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Thanks for joining me on our PTR HeatherSue! We're excited to go at Christmastime too! BTW, I'm a big fan of your Trip Reports. Your Dueling Trippies with your sister last year had me ROTFLMAO on many occasions!
Thank you!! I just finished another TR from a Feb trip w/ my mom and kids and Teresa just started one from her May trip with her family! We're both going again in October, too!
-------------------------------

Thank you so much for sharing Bella's story with us. She is such an amazing little girl!
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