Thursday, November 19, 2009
Lexx's big sister Ayva, has opened up her own online store. Her store, called Everything Ayva, features everything for girls, from pettiskirts to bedding to toys. She worked her own table at Lexx's fundraiser, donating all of her profits to her little brother. All profits made until the end of December will also be donated to Lexx. She has hand picked all the items in her store, with the help of mom of course, and she has one of everything!! Here is a picture of her in her pettiskirt and her hat and mitts that she sells. Please visit her website at www.everythingayva.com and check it out!! Remember, all profits up to the end of December are donated to Lexx.
Wednesday, November 18, 2009
Lexx has been doing great at home for the last month and we are loving it!! We don't get out much now, because of all the germs and flu bugs out there, but he's been healthy and happy!! Ayva has a little bit of cabin fever, but we are able to sneak out once in a while for some Ayva and mommy time, just hanging at the mall or going for snacks!! Lexx and Ayva were finally able to get their H1N1 shots. We were anticipating a long line up but we were prepared. We loaded up Lexx's ride (the motorhome) and off we went. We parked in the parking lot and Ayva and I went in to get our numbers while Lexx and Grandma Mah relaxed in the camper. We ended up having to wait 2 hours, but the time just flew by while we had lunch and watched a movie. We love Lexx's camper!!
Our latest fundraising idea is so useful. It's a cosmetics bag with A Life for Lexx logo on it. It's black and stylish, and is so roomy that you could use it as a purse. Please contact me if you would like to purchase one. They are $25.00 each plus $10.00 shipping.
Monday, October 26, 2009
We want to thank everyone for coming on Saturday night and supporting our little man Lexx!! We are deeply touched and moved by the amount of support that everyone has given to Lexx and our family. The turnout was amazing and we hope everyone had a wonderful night.
The night was such a huge success and we exceeded our goal of $5,000 US that we pledged for Unite for the Cure. In total, we were able to raise $19,316.64 in one night (this is after all expenses have been paid)!!!
A huge thank you goes out to all of you who came and supported the event, our sponsors, those who weren't able to come but still donated, and of course our volunteers!!
Thank you everyone again for coming out and supporting our 1st Annual Silent Auction and Fun Casino and I hope to see you all there next year!!!
Thursday, October 1, 2009
Lexx is supposed to be having his surgery for his port/IVAD a week from today, but with him being as sick as he is now, I'm going to have to cancel his surgery and postpone it to a time when he's been healthy for at least a week before hand. Putting him under general anesthetic now would just set him up for failure and the possibility of a longer intubation period after the surgery. And that's a risk that we're not willing to take. So, for now, we'll have to postpone it until he's healthy again.
Friday, September 25, 2009
Sunday, September 20, 2009
SATURDAY, OCTOBER 24, 2009
HOLIDAY INN 67TH STREET, RED DEER
Cocktails at 6:00pm
Dinner at 6:30 pm
Poker Tournament starts at 8:30 pm, $50 chip buy in (ORGANIZED AND OPERTATED BY CASH CASINO, RSVP REQUIRED BY OCTOBER 9, limited seats)
DINNER AND FUN CASINO $100 Per Person
RSVP DEADLINE: OCTOBER 9. Please email email@example.com or call 403-318-2487 for tickets or for more information
The first $5,000US in proceeds will go directly to stem cell
research for SMA which is near human clinical trials as part of the Unite for the Cure Campaign. This research has potential to cure SMA, and we are uniting to close last the $500,000 funding gap.
Remaining funds raised will be used directly for Lexx's critical medical equipment and everyday medical necessities. Lexx was diagnosed with SMA Type 1, at 3 months old.
Poker Tournament Prizes
1st Prize - Wild West Shootout Poker Tournament Ticket
Calgary Cash Casino, Ticket Value $760
2nd Prize - 32" Flat Screen TV
3rd Prize - Night Out: $50 Gift Certificate for the Keg
Night stay in Jacuzzi Suite, Holiday Inn 67th St.
SILENT AUCTION, RAFFLE AND DOOR PRIZES PROVIDED BY THE FOLLOWING SPONSORS:
Accounting for Success
Port O Call Safeway
Avon - Liza Wiley
Red Deer AG Foods
Beaners Cuts for Kids
Red Deer Frame-It Store
Rooster Tails - Natasha Hunt
Rowland Parker and Associates
Busters Pizza, Donair & Pasta
Central Alberta Tile One
Sobey's Village Mall
Chatters Parkland Mall
Something Country Flowers & Gifts
The Bra Lounge
Creative Snaps - Kari Grant
The Gallery on Main
Deerfoot Inn and Casino
The Nail Room
Divine Serenity Spa & Massage Therapy
Gasoline Alley Harley Davidson
Toyota Red Deer
Green Apple - Bower Mall
Holiday Inn 67th Street
Keely Black Photography
Make Your Bed
Investors Group - Bob Howell
Mary Kay - Francoise Sedor
Meadowlands Golf Club
Pampered Chef - Jeanine Foulston Anderson
Mary Kay - Janice Savage
Paradise Indoor Golf and Recreation
Parkland Sled & ATV
And more to come...
QUICK FACTS ABOUT SPINAL MUSCULAR ATROPHY:
Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
WHO IS AFFECTEDSMA is one of the most prevalent genetic disorders.
One in every 6,000 babies is born with SMA.
SMA can strike anyone of any age, race or gender.
One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
7.5 million Americans are carriers.
THE TYPES OF SMASMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.
Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I will require various medical equipment to help them maintain daily respiratory function, and will require a feeding tube when they lose their ability to swallow. These children have extremely limited mobility.
Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.
Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.
Type IV is the adult form of the disease. Symptoms tend to begin after age 35.
SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable.
Sunday, September 13, 2009
ShopToEndSMA.com: a GSF project to benefit SMA!
Okay. We've created a super duper simple way that all of us can help raise much needed funding for SMA awareness and research without pulling even a cent out of our own pockets ---> it's called ShopToEndSMA.com and it's a project of the Gwendolyn Strong Foundation.
We all shop online. And now, through ShopToEndSMA.com, we can continue to shop at all of our favorite online stores and know that a generous %, sometimes as high as 50%!, of our normal shopping dollars will be going to benefit SMA!
Here are two simple ways that you can ShopToEndSMA.com:Go through ShopToEndSMA.com directly:
1. Ready to buy that perfume from Sephora?
2. Go to ShopToEndSMA.com
3. Click on "Merchants"
4. Search for "Sephora"
5. Click on it
6. Click on "Shop now" and you'll be taken directly to the Sephora website
7. Buy your perfume just as you normally would through Sephora and, not only get your new pretty smelling perfume, but feel great knowing that a % of your purchase just went to help SMA awareness and research!
8. That's it!
Download the browser "reminder" plugin:Because ShopToEndSMA.com has so many online stores as partners, by downloading the plugin you will never miss an opportunity to put your normal online shopping dollars to work towards SMA awareness and research. Follow the steps below to download the browser "reminder" plugin, do your online shopping as you normally would and you'll be automatically reminded when ShopToEndSMA.com will benefit from your purchase. It's super simple!
1. Go to ShopToEndSMA.com
2. Click on "Downloads"
3. Scroll down
4. The plugin works with either Internet Explorer or Firefox. Decide which version you need, check the box to accept the Software License
5. Click "Download" and follow the instructions
6. That's it!Online merchants participating in ShopToEndSMA.com include Amazon, Sephora, Babies R Us, Barnes & Noble, Bloomingdales, Crocs, Diapers.com, EBay, Macys, Office Depot, Old Navy, Target, Staples, Shutterfly, W Hotels, , Walmart, the list goes...on...and...on -- basically most places you already shop.
Let us know if you have any questions and also tell us know what you think!Now through the end of November 2009, the Gwendolyn Strong Foundation will be donating 100% of the proceeds from ShopToEndSMA.com to Unite For The Cure.
Saturday, September 12, 2009
Wednesday, September 9, 2009
Saturday, September 5, 2009
Trying to get an IV into Lexx this time took about 45 minutes, which brought forward the need for a port. A port is a small disc that goes underneath of his skin in his chest which is then threaded into a large vessel, giving him instant IV access. This of course requires surgery. We've decided that with the upcoming flu season, and the likeliness that he will be admitted again and will need an IV, this would be the best option. So, he will be going for surgery in 4 weeks, when he is well over this cold, and is at his healthiest to undergo another surgery. But for now, we are all home and loving it!!!
Sunday, August 23, 2009
Saturday, August 22, 2009
Friday, August 21, 2009
Thursday, August 20, 2009
For the 8 weeks, he was fed through a NG tube. This is a tube that goes through his nose, into his stomach, and his milk is pumped through. Although I knew that he would eventually lose his swallow as a result of his SMA, I wasn't prepared for it. The last week that we were at the hospital, he was put through a swallow study, which tells us if it's safe for him to eat orally. It was confirmed that it wasn't safe, and that he had lost his swallow. He would not be able to eat orally anymore. It was then that I realized that the last time I nursed him was in emergency 8 weeks prior. That was so hard for me. Part of me knew that it was safer for him to be tube fed, but part of me felt like a failure, one of the most important things for a mom to do was to feed their child, and to me, that meant in the traditional sense, orally. It took some time, but I was eventually able to get over it and accept it. This brought about his second surgery. His G-Tube surgery.