Another Cold in the House

Well, there's another cold in the house. Ayva was sick, Mike is sick, and now Lexx is sick. He doesn't tolerate being off of his Bipap (a machine that helps him breath) and he's usually off of it all day. He's had a lot more secretions during the day today so I've increased his treatments. At first I increased them to every 4 hours (he usually only gets them twice a day) but by the end of the third hour, he's needing another one. So, we're on every three hours, 24 hours a day. Hopefully this will be enough to keep us out of the hospital!!

You're All Invited to...

1st ANNUAL CASINO NIGHT AND SILENT AUCTION FUNDRAISER

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)

TICKETS:
DINNER AND FUN CASINO $100 Per Person

RSVP DEADLINE: OCTOBER 9. Please email alifeforlexx@shaw.ca 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.
http://www.blogger.com/www.uniteforthecure.com
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
Boston Pizza
Rooster Tails - Natasha Hunt
Bower Mall
Rowland Parker and Associates
Busters Pizza, Donair & Pasta
Scrapbookers Paradise
Central Alberta Tile One
Sobey's Village Mall
Chatters Parkland Mall
Something Country Flowers & Gifts
Galaxy Cinemas
The Bay
Clowes Jewellers
The Bra Lounge
Creative Snaps - Kari Grant
The Gallery on Main
Curves
The Keg
Deerfoot Inn and Casino
The Nail Room
Divine Serenity Spa & Massage Therapy
Therapeutic Kneads
Gasoline Alley Harley Davidson
Toyota Red Deer
Green Apple - Bower Mall
Heritage Lanes
Holiday Inn 67th Street
Housewarmings
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.

Shop to End SMA: Created by Bill Strong

Bill has created another easy way to raise money for SMA. See below for a copy of his blog on how to do it!!

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.

Port Surgery Scheduled for October 7th

Lexx's port surgery is scheduled for October 7th!! I was hoping not to have to take him into the hospital again for quite a while, but since this is a scheduled appointment, it's not as bad. The surgery itself should only take about an hour, but with his SMA, they will be keeping him for a couple of days, just to make sure he's 100% before we go home for lockdown!! He will pretty much be under lockdown for the winter season, due to the flu and whatever else might be out there. Last year, he was only hospitalized once in the winter from a cold, and I would love it if we didn't have to go in at all this year. I'm glad that his surgery is scheduled for so soon, so we're not taking him in when the flu season is in full swing.

1st Annual Casino Night and Silent Auction Fundraiser

We are in the process of organizing our first fundraiser for Lexx. We have created a non-profit organization called "A Life for Lexx" that is hosting this event. There will be dinner and casino games as well as silent auction items and door prizes. The date, Saturday, October 24, 2009. It sure is coming up fast!!! The first $5,000 raised will go directly to the stem cell research in the US that is so close to human clinical trials. They are short the funding, which sucks!! It's hard to believe that a potential cure for this awful disease is being held up because of money!!! Good thing we have Bill Strong. He comes up with these great ideas!! He has a daughter who is only 2 months older than our Lexx, and also has SMA Type 1. He has created this campaign where families sign on to raise $5,000 each, and together we are aiming to raise $100,000 to be used specifically for the stem cell research. Here is a link to the Unite for the Cure website for all the details: http://uniteforthecure.com/ We are currently working on getting all our corporate sponsors, silent auction prizes, door prizes and the grand prize for the poker tournament. It should be a great time!! Maybe we will see you there.

Home from PICU

We've made it home from another visit from the PICU. A few weeks ago I came down with a cold and even though I tried so very hard not to give it to him, Lexx ended up catching the same cold. I thought we could maintain it at home, and for the next week, we increased treatments (chest physio and cough assist) to every four hours and he seemed to be doing much better, as was I. So, I decided to ease back a bit on the treatments. The next morning, Ayva woke up with the same cold. Switching my focus on getting her healthy, Lexx's treatments stayed at his normal treatments, when it should have stayed at every four hours, until this bug was out of our house!! A couple days later, Lexx woke up and wouldn't tolerate being off his bipap machine (a machine that he wears at night to help him take deep breaths when sleeping so he can get a good nights sleep). By that night, I was on the phone with his pulmonologist (a lung specialist) making arrangements to get down to the Alberta Childrens Hospital, ICU. Just as we suspected, he had a pneumonia in his right upper lung, which always seems to collapse when he catches a cold. For the next 10 days, we followed full treatments every 4 hours, even through the night and IV antibiotics. Again, he fought hard and got through another cold, still smiling at all the familiar nurses, doctors, and respiratory technicians. Ayva stayed at the hospital with us the whole 10 days as well, loving all the attention from her "best friends" in the unit who give her tons of stickers and popsicles.

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!!!