Friday, July 27, 2012

Step Forward to Cure Tuberous Sclerosis: A Cause Close to My Heart

In addition to my hobby of being a party planner, my full-time job is being a mommy to two beautiful boys. My oldest, Greyson, in whose honor my business is named, has a disease called Tuberous Sclerosis. Have you ever heard of it?
We hadn't either....until Greyson was diagnosed. 

This is the official definition: 

 Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome. 

The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.

When Greyson was born, he was perfectly healthy. We had no indication that anything was wrong until he was two months old and began having infantile spasms, which are a particularly devastating type of seizure in infants. He has struggled with seizures almost every day since. 

Greyson is considered moderately affected by TS, which results in him having intractable (uncontrolled) epilepsy and tubers (or benign tumors) in his brain, retinas and kidneys and learning disabilities. He is almost completely non-verbal at the age of four and attends a special needs pre-kindergarten within our local school district. He is also on 3 different seizure medications and a hypertension medicine daily. 
 In addition to Tuberous Sclerosis, Greyson also has polycystic kidney disease, which is linked closely with TS because of the proximity of the genes in your DNA. At some point in Greyson's life, he will most likely be faced with a kidney transplant or brain surgery.  

In spite of this, Greyson is a trooper, inspiring everyone he knows on a daily basis. I have never met a stronger soul than him. I am not saying that just as his mother, but as someone who has seen every blood draw, sedation, EEG, MRI, blood transfusion, hospitalization, and other invasive testing he has gone through. 
He is the absolute light of our lives. We are honored to be his parents. 
And any parent who as seen their child suffer will know that is the worst thing that you could ever imagine.
But, there are many who are much worse off than him. Some patients have hundreds of seizures a day and are severely mentally and physically delayed. 

I write this not soliciting pity, but in the hopes that spreading the word about Tuberous Sclerosis and educating those who are not familiar with this disease will raise the profile of the TS Alliance and therefore help them help Greyson, and the millions of others with TS. 
In this blog, I have uniquely public forum to educate my readers about this debilitating disease. 

There is NO CURE for Tuberous Sclerosis. 
And it can happen to anyone. 
Two babies are born every day with TS in the United States. 
But, we hope to change that. 

So, for my sweet baby, and for all the other people in the world with TS, I chair a walkathon every year in their honor. That walkathon raised over $50,000 last year. This will be my second year to chair. 
So, I am asking you readers to help me fund-raise for Greyson. 
As chair of the event, I am responsible for not only fundraising for my team, but also bringing in corporate donations and silent auction items. 

This year's walkathon is Saturday, October 20th at Centennial Park in Nashville. 

Every single penny goes towards helping Greyson and others with TS. 
So, I am asking you to help me by donating here at Greyson's page: 

OR, donating a silent auction item!
If you are a party vendor, we would love to have some items from you!
Or even gift certificates!  People of all walks of life are at this event and everyone loves a silent auction!
Every donation is 100% tax deductible. 
(Illustration by the tremendously amazing and talented Michele at Intrigue Design Studio!)

 But, more importantly, I am asking you to share this page. 
Raising AWARENESS is just as important as raising money. 

Thank you so much for reading!

Monday, July 9, 2012

{My Parties} Lachlan's Loch Ness Monster Party

When I was brainstorming my baby's 1st birthday party, I threw around a couple of ideas for a few months. His name is Lachlan, which isn't a very popular name in the U.S. right now, but it is pronounced "Lock-lun." His personality is boisterous, to say the least, so if you put the two together, what is a better nickname than "Lach Ness Monster?"
This party was originally going to be a large party for our friends and family, but the week of his birthday, my oldest went into the hospital. If you follow my blog, you know that my oldest son has a variety of health issues. So, we had to move Lachlan's birthday party to the next weekend and we downsized considerably to just family and our closest friends. 
But, I couldn't let my baby's day go by without celebrating the amazing year he has had. 
So, without further explanation.....the "Lach" Ness Monster party!

My first stop was Piggy Bank Parties. Do and J are always my go-to when I am creating a party theme that is not mainstream. They are amazingly talented and always create beautiful illustrations for me. I sent them ONE inspiration picture of a sweet looking monster with some beautiful waves and they came back to me with this beyond gorgeous invitation. I fell in love immediately. My favorite part is the plaid golfing tam that Nessie is wearing! So cute. 

Natalie at The Knock Knock Factory made Lachlan this beautiful wreath for the front door. Doesn't it just look like water? It's like the male version of her signature mermaid wreath. 
 I love how she created her own plaid out of glitter. 
 And even the Nessie on the wreath has his own tam!
 I always have to have a staircase hanging--it is my signature when it comes to my babies' parties. For this hanging, I cut a "one" out of foam core and then wove crepe paper by hand into a plaid pattern. 
 I know I am biased, but he's pretty freaking cute. His shirt was made by my sweet friend Mollie, who makes my boys a shirt every year for their birthdays. I sent her one of the plaid fabrics that I was using and she sent me back this adorable shirt. 

 For the menu, I wanted savory appetizers with fun, lake-themed names. 
I found this wave-shaped planter at Michael's and spray-painted it blue. It was perfect for my "Lake Algae" spinach dip. The Nessie lumps are PVC pipe spray-painted green. If you look closely, you can see some items that were "party-recycled" from my party closet, such as this glittered L from my Leap Year party. 
 I also made pasta salad, which I dyed green. Did you know that you can dye pasta? I simply boiled it, then let it cool and added green gel food coloring. I used macaroni noodles because they looked like the Nessie lumps. I got those adorable cups and wooden spoons from In the Clear on Etsy. Then I added plaid washi tape to the bottoms. 
 The wooden castles are from Michael's. I spray painted them silver. If you know anything about Lach Ness, there is a castle on the shores, called Urquhart Castle. I created those cake stands with some plates and ice-cream cups from Hobby Lobby. 

I made the little dessert picks with pom poms, toothpicks, and some hot glue. It really gave the sausage balls an extra cute-factor. 
 What else but plaid oreos? 
 The celtic knot pretzels were an easy last-minute addition to the menu. 
 I am pretty much obsessed with the smash cake. I mean, Melanie at Mad Lily Cakery blew it out of the box. She was, as always, amazing to work with. 
 I knew I wanted a unique cupcake stand, so when I found this candle holder at the antique mall, I knew I had to have it.  Mindy at Creative Juice inspired me to use a candle holder as a cupcake stand when I saw her amazing July 4th party, which debuted in the Bird's Party Magazine.  This one was originally an aqua color, but a little spray paint fixed that. I added the green craft foam onto the back with hot glue and then used a piece of PVC pipe and some more craft foam on the front for the head of Nessie. Add a googly eye and a tam made out of extra fabric and you've got a Nessie cupcake stand. 
 This is also a good picture of the tablecloth treatment. I wanted it to look like a kilt. Ironing all those pleats in the cloth sucked, but it was totally worth it. I love how it turned out. 
 And who else but Lynlee's Petite Cakes to make my Nessie cupcake toppers a reality?
I got this inspiration from a link I saw here. I think ours were cuter though!
I don't have any idea how Lynlee can make plaid out of fondant! I couldn't get close enough with the camera to show the level of detail, but there were also little wave patterns in the blue part. 
 Do and J were sweet enough to send me a high-resolution file of Nessie, so that I could print out a large version of him for my background. I ordered him from Shutterfly on 20x30 paper and then glued him to foam core and cut around him with an xacto knife. 

 Also at the antique mall, my mom spotted this little concrete worm, and I knew I had to have him. I painted him, of course, and added him to the gift table. For the waves, I cut the pattern into the paper covered foam core and then peeled the paper off to expose the white part underneath. 
 And, of course I added a tam to this Nessie's head too!
 The beautiful, fabulous printables. The waves are so gorgeous. 
 My Lach Ness had a big time with his cake!
 And who else but The Purple Pug herself could have made this beautiful banner for his high chair? You can't see in this picture, but there is a little Nessie on the left side, which of course was glittered. 
 For his monthly pictures, I used blue bulletin board borders. You can find these in the classroom portion of Hobby Lobby. I liked the way they mimicked waves. Then, I used a brad to attach the pictures, so they would hang off. I used a Martha Stewart plaid edge cutter to made the cardstock look plaid. Then, I added a little printable from Piggy Bank Parties to give each picture a little extra something. 

 For his gift, my sister had her friend paint this beautiful picture of Lachlan, so we had to have it on display at the party!
 I wanted to do something out of the box for the favors, so I decided to do slice-and-bake cookie dough rolls--"Ness-le Tollhouse Cookies!'
 I wrapped them in green felt and hot glued them shut. I froze them before the party so that they would stay cold during it. Then I tied a bow onto them and added a cute favor tag. 
 And of course, some gratuitous cute baby cake-smashing pictures! 
 He is pretty good at it. 

Happy 1st birthday to my sweet, crazy Lach Ness Monster!


Cake and Cupcakes: Mad Lily Cakery
Fondant Cupcake Toppers: Lynlee's Petite Cakes
Plaid Oreos: Sweet Temptations
Printables: Piggy Bank Parties
High Chair Banner: The Purple Pug
Washi Tape: Pretty Tape
Green and Blue Cups: In The Clear
All Styling and Photography: GreyGrey Designs

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These boy party ideas were also featured on Spaceships and Laser Beams.

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