17th Annual RBC Cruisin Down The Crescent 10K Walk

On June 9, 2013, my husband, Stephanie and I participated in the 17th Annual RBC Cruisin' Down the Crescent in order to help raise funds and awareness for the charitable foundation Children's Rehabilitation Foundation. The Rehabilitation Centre for Children has been a great assist for Stephanie this year.  Her seizures, intracranial hypertension, and medications have set her back the last few years and her mobility has regressed significantly. However, this year she has already received a $4000 Freedom Concepts Bicycle and a Gait Walker to help her gain some strength and freedom back.

"The Children’s Rehabilitation Foundation is a Manitoba charity, dedicated to helping children with disabilities and special needs be as independent as possible. We are the fund raising arm for the Rehabilitation Centre for Children (RCC). The Centre is an outpatient facility providing rehabilitation services and specialized health clinics for children and youth who live with life-long conditions."

The overall funds raised that day was $170,000 and I believe we were personally able to raise $360.  What a great day of walking, talking, enjoying the beautiful weather and great company.  In addition to walking with our close friends Michelle, Dave and their son Brayden, we were also surprised along the walk with a visit from one of Stephanie's weekly respite workers. She was waiting along the walk just to cheer us on and ended up joining us for most of it!

Just after our walk, we had a great opportunity to meet Janine Hanson, the 2012 Olympic Silver Medalist in Women's Rowing.  She was a great encouragement to all the children and adults participating in the 10K walk.  We even got a signed card and photograph with Janine!

Cheers!

 

Special Olympics Manitoba Track & Field 2013

I can't tell you how proud I am of my little girl participating in the Special Olympics Manitoba School Track & Field Meet in May 2013.  I am a little behind in posting events but you can blame it on my new business!

Stephanie had a great time and for the first time in my life as a parent (14 years already) I got to open her backpack and find a certificate and track meet ribbons!  This might be a standard occurrence for most parents on an annual basis but it was a first for me and it made me teary just knowing she was out there, participating, living life.  And to top it all off, the 3 ribbons were all 1st Place!! (*picture my big grin right about now*) 1st place in the softball throw, 1st place in the 25m and first place in the 30m!  Here are a few pics of her day...

Cheers,

One proud mama

 

New Home Business!

Okay, I am shamelessly going to promote my latest creative venture in this post, my new home/online business, AshleyGabby Designs.  What does this have anything to do with Stephanie and why am I posting this on a blog about her?

I'll tell you!  I used to sell dolls and crafts when I was 18 or 19 at a large department store in Canada known as The Bay (or Hudson's Bay Company).  Back then it was fun and I didn't really go anywhere with it.  So, since I have put my career on hold for the last year or so, I have started to indulge in my creative side even more.  I made birds on a branch for Steph, I actually did some party planning and decorations for her last two birthdays, I started sewing and have my own craft room, I made a doll, etc. etc.

My husband encouraged me to think about selling some of the projects I was coming up with.  Hmm, good idea!  We talked about wanting to dedicate the business to Stephanie and other kids like her.  We talked about having a signature "item" that could be sold and a portion of the profits would go to awareness or research for one or all of the conditions Stephanie faces.  I am still working on that special item but in the meantime, I am making children's play tents - where kids can be kids, I am making some home décor for mom's and dad's, and I am making custom sterling silver jewellery. 

And here is where I get to the point! lol

The custom jewellery I make includes awareness ribbon and autism puzzle piece stamped sterling silver.  You can custom request a piece of jewellery with your child's name or a special inspirational word, and include a ribbon or puzzle piece symbol as well. 

To top it all off, I have named the business AshleyGabby Designs in honor of Stephanie.  She had two dolls, one named Ashley, one named Gabby.  When she desperately wanted one of them, she merely told us she wanted "AshleyGabby" and we NEVER brought her the right one first! This is why I chose to leave the name without a space.  That's my Steph!

I am really excited about this new opportunity to focus on Stephanie's well being by being a stay at home mom, while still getting the chance to be productive and creative for my own well being.  Please visit my Etsy shop or "Like" my facebook page and don't hesitate to provide feedback about what new items you might like to see!  Here are the links:

Etsy:  www.etsy.com/shop/AshleyGabby
Facebook:  https://www.facebook.com/AshleyGabbyDesigns

Cheers!

Darlyn

Happy 14th Birthday Stephanie!

Wow!  What a whirlwind past couple of weeks it's been!  As you saw from my last post, Stephanie recently spent a week in hospital while doctors treated her for infection (possible shunt infection).  We managed to get discharged last week Saturday, the day before her big 14th birthday party!

Needless to say she had the most wonderful day with all her favourite people in attendance.  In addition to receiving a million gifts and having loved ones around, it was an extra special day for her because she also received a dream cake from Renee Reyes of Sugaristic Expressions, courtesy of the non-profit organization Icing Smiles Canada.  AND we were on our local news station as well!  CTV news crew were interested in covering the story of Icing Smiles Canada presenting it's very first cake in Canada and Stephanie was the lucky recipient of that cake.

I could not believe the beauty and detail of the cake that was specially made for Stephanie's big day.  Renee did an absolutely amazing job and we cannot thank her enough for all the hours of labour and love that went into that cake. Happy Birthday baby girl!!!

Here is the CTV news clip:
http://winnipeg.ctvnews.ca/video?clipId=905435&binId=1.1206917&playlistPageNum=4

And a little about Icing Smiles Canada:

"Originally founded in the United States 2010 to create memories for children whose world is rocked by illness, Icing Smiles, Inc. has grown immensely, with more than 3600 volunteers in 50 states, chapters in Canada and Holland and hundreds of bakers all over the world anxiously awaiting their opportunity. In the US alone, Icing Smiles has served more than 3300 children and has more than 500 scheduled for future cakes. It started with one woman, flour, sugar, butter and love and has since created memories for thousands of families - memories of the kindness of a stranger, the sweet smells of a special treat, the smiles and laughs, a normal childhood experience so often stolen from these children. These memories are why "It is so much more than a cake."  The Canadian chapter was incorporated in December, 2012 and already has over 100 volunteers across Canada and several requests for cakes from deserving families."

 

Freedom Concepts Bicycle

Just a little news that I forgot to share! Stephanie received her new Freedom Concepts bicycle a couple of weeks ago and I forgot to write about it since she was still at home recovering from shunt surgery.  Now that she has been back to school this last week and her bike has been adjusted to her body, I can't wait to see her learn to use it!

I have to thank her school physiotherapist for getting the ball rolling and getting Stephanie this bike.  I received news about a month ago that President's Choice Children's Charity was going to fund this new bike for her.  It's still hard to believe that a kid's "bike" costs upwards of almost $4,000!  Well, a bike for a child with special needs that is.  So PC Children's Charity funded the bike and it was actually supplied by the Children's Rehabilitation Foundation here in Manitoba.  They are a wonderful organization and Stephanie previously had a similar bike loaned by them a number of years ago, before she suffered from vision loss and daily seizures.  I am so happy and proud that Stephanie can once again have a little more freedom,something that was slowly being taken away from her over the last 2 1/2 years, something every child should have.

Once she outgrows the bike or no longer has use for it, we can donate it to another child in need through the Children's Rehabilitation Foundation.  What a great way to pay it forward! 

PS. Stephanie, watch the speed limit when you are doing laps in school...and where is your helmet young lady!

New Diagnosis: Lennox-Gastaut Syndrome (LGS)

Last week Friday, Stephanie was diagnosed with Lennox-Gastaut Syndrome (LGS).  We saw the neurosurgeon and neurologist on March 8th. Her new LP Shunt is working exceptionally well and she seems to be more "aware" of her environment and is talking more and learning a few new words.  She will be weaned off her increased pressure meds and we'll see how she does.

Unfortunately, Steph also started having a new kind of seizure last week. The neurologist now had enough information to diagnose Stephanie with Lennox-Gastaut syndrome, among everything else. We finally know that even after our best efforts, we may never be able to rid her of these many different kinds of seizures and the best we can do is reduce the impact as much as possible with medications, the brain surgery she already had and next probably a vagus nerve stimulator implanted in her chest. In addition to the seizures, LGS can also cause cognitive/mental regression, even mobility regression.  I am planning to work with her therapists to be a little more aggressive with speech, occupational, and physio therapy.  I found video of her from just a few years ago that is of a completely different little girl than who we see today.  It really shows how much she has slowed downed and even regressed.  It's not always easy to notice these changes in the day to day of raising a child with special needs, especially when medical care has been the number one priority. 

I am a little more heart broken again.  One step forward and two steps back, this is beginning to be a theme in our lives.  My saving grace is that Stephanie still lives in the moment and enjoys all the small things life has to offer - Miss Piggy, toys, her close friends, snacks, and music. I know she doesn't need much more than this but I so wish I could give her the world! I guess I am going to have to try my darndest to do just that!

Here's a little excerpt from the LGS Foundation:

"Lennox-Gastaut syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike- wave complexes. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.

Some of the known causes of Lennox-Gastaut Syndrome include brain injury associated with pregnancy or birth (including asphyxia, low birth weight, and prematurity), severe brain infections (including encephalitis, meningitis and rubella), developmental malformations of the brain, or a history of infantile spasms. In 30-35 percent of cases, no cause can be found.

Most children are typically developing normal when first diagnosed, but then begin to lose skills, sometimes dramatically, in association with uncontrolled seizures. Young children with LGS may exhibit behavioral issues, personality disturbances, mood instability, and slowing of psychomotor development. Behavioral disturbances can include poor social skills and attention seeking behavior, which can be caused by the effects of the medication, difficulty interpreting information, or the electric disturbances in the brain. Some children with LGS are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness). This requires medical intervention to bring it to an end." ~ LGS Foundation