Snow cones and donations

Ayva and Lexx's best friends Nia and Bishop were so sweet this summer!!! They had a snow cone stand on their block, selling snow cones for donations to Lexx!! Here's a picture of these two sweet kids!!!

Everything Ayva, All Profits to Lexx

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.

A Life for Lexx Cosmetics Bag and Lexx

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.

1st Annual Silent Auction and Casino Night a Huge Success!!!

Hi Everyone!!

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!!!

Lexx's Port/IVAD surgery on hold

Well, I think we are on day 6 of Lexx's current cold and we are still on full treatments (chest physio and cough assist) every three hours (Q3), even through the night and coughing him almost every half hour. It makes for a very busy day, but at least we're still home and not in the ICU in Calgary. Not that we don't love the nurses, docs and staff there, but it is so much nicer to be at home. Especially for little Ayva, to be around all of her own things and family and not locked up in a hospital room. Ayva still has a cough, but she seems to be getting better slowly as well. I'm hoping that a couple more days of Q3 treatments and we can back down to maybe Q4.

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.

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!!!

Easter 2009

Another cold, another hospitalization. What am I going to do with him!! It seems like a routine for him. A cold, pneumonia, right upper lung collapse, emergency, transport to Calgary ICU. Three weeks this time, requiring intubation. Maybe I didnt' catch it soon enough this time, but he was struggling to breath, so they intubated him in Red Deer, for a safer transport to Calgary. After a few days, we thought he might be able to extubate him. The thing with SMA kids is that once they are intubated, there is always a chance that they won't be able to be extubate. So a sooner extubation is always better, so long as he's ready. He wasn't. After being extubated for half a day, they had to reintubate. After another week of treatments every 4 hours again through the night, there was a second try at extubation. He did great!!! His lungs cleared up and we were on our way home after three weeks.

Happy Birthday

Lexx's first birthday. It was bittersweet to say the least. I was so proud of him, to have made it to his first birthday!!! We were told when he was diagnosed, that he probably wouldn't live to see his first birthday, and if he did, we were lucky. Well, he made it!!! We had a birthday party at Grandma Mah's house, big dinner of course!!! We were so happy. That night however, he began to have difficulties breathing, and off we were to emergency. The transport team were coming from Calgary to get us, and there we were, our third hospitalization at the Childrens Hospital. Again, his right upper lung had collapsed. That darn right upper lung!!! However, because we caught this one early, it was our shortest stay ever, home in 4 days!!!

G-Tube surgery

In November 2008, Lexx was schedule for his G-tube surgery. A G-tube is a tube that is placed through his abdomen into his stomach to feed him. Up until then, he was fed through a tube that went through his nose, into his stomach. A G-tube would eliminate a tube hanging from his nose. He did great through the surgery, but took some time to recover. He was extubated immediately after surgery, and we were sent out of ICU to Unit 2, only to return that night to ICU because he was having difficulties breathing. We stayed in ICU for about another week, for him to recover. X-rays showed that his right upper lung had collapsed, and we were faced with another pneumonia. Again he pulled through like a trooper and we were on our way home. Here are a couple of pictures, smiling as usual, post and pre surgery.

First Hospitalization

August 8th, 2008. Lexx woke up with a runny nose, and seemed very lethargic, and did not want to nurse. I thought he was just tired, and caught a cold. He fell back asleep while I held him in my arms. An hour later, he woke up, coughing, but still seemed very tired. By this time, he had not eaten anything for quite some time, but again, he did not want to nurse. I tried waking him up, and stimulating him, but he just look at me with droopy eyes. I held him up, looked at him, and he looked at me, gasping for air, and then he went limp in my arms. His face was blue, he was not breathing!! Mike (daddy) called 911. I moved him around and bounced him, and finally, he took a breath. Moving him around must have opened up something that was blocking his airway. Everything happened so fast. The ambulance was there in a matter of minutes and the next thing we knew, we were sitting in emerg. Because of his condition, he was transported immediately to the Alberta Childrens Hospital in Calgary, where he stayed in intensive care for 8 weeks. The first few days there was awful. He fought so hard but his xrays showed no signs of improvement. His lungs were completely whited out, meaning that they were full of secretions. Finally after the third day, the doctors decided to intubate him (put in a breathing tube). We were completely in shock. We went from having our little boy at home to watching over him in a hospital bed, with doctors telling us that realistically, he probably would not survive this pneumonia. It was so hard to believe!! My beautiful boy might not live. Day in and day out he fought and fought. SMA was such a rare condition, that the doctors weren't familiar with it at all. He ended up with a pneumo thorax, which is a hole in his lung, which let the air escape from the lung and be trapped in between the lung and the chest wall. He needed three chest tubes inserted into this space to let the air escape while his lung healed. Two of the three chest tubes were inserted in ICU, but the third needed to be bigger, and we were faced with his first surgery. His surgeon was great. Dr. Mary Brindle put us at ease with the surgery, explaining and answering all of our questions. After the pneumo thoracies healed, it was a matter of getting his lungs clear, which took some time. By the end of 4 weeks, the doctors felt that we should try extubating him (taking out the breathing tube) and see if he could breath using just a bipap machine. (A bipap machine pushes air into his lungs with each breath, essentially giving him breaths, since he wasn't strong enough to take adequate breaths on his own). If he couldn't tolerate it, he would have to be reintubated, until we could try again. He did great!! From there, he spent the next 4 weeks in the hospital, slowing coming off the bipap machine, and only using it at night, giving him a break from his hard work of breathing on his own during the day.

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.