Tuesday, August 30, 2011
This past Saturday marked the one year anniversary of Kylie's Juvenile Dermatomyosits diagnosis. It is so weird but looking back, it's hard for me to even remember a time without it in our lives. We went from having perfectly healthy children (we even went 2 years without a checkup just because there was no need to take them in to the doctor's office) to having our oldest daughter diagnosed with a rare (3 in a million) auto immune disease that would pretty much control our lives on a daily basis. There is currently no cure for JDM.
JM (Juvenile Myositis) causes a variety of debilitating symptoms including:
• Muscle weakness and pain
• Severe fatigue
• Swallowing and digestive difficulties
• Lung and heart problems
• Vasculitic ulcers
I feel so extremely blessed that we live close enough to Seattle Children's Hospital where Kylie can get the absolute best care from doctors who have experience working with other children with this same disease. Thankfully Kylie's body has been doing a great job trying to get back to 'normal' but we are still faced with new problems continuously throughout this journey.
Since being diagnosed with JDM on August 27, 2010 Kylie has-
*Swallowed over 1200 pills
*Sat through at least 49 hours worth of infusions
*had multiple xrays including ankles and chest (3 or 4 times)
*2 pulmonary functions tests
*Had an EKG
*Spent over 40 hours in doctors offices
*Around 50 at home injections of Methotrexate (a mild form of chemo)
*Developed cataracts as a side effect from one of her medications
*Been on different forms of antibiotics 3-4 times in as many months
*Has had around 15 blood draws
*Has been put on an inhaler for what doctors think may be a form of asthma
*Has been having a steady cough for over 4 months
*Now has a case of retracting pneumonia that we can't find the cause of
*Has to be completely covered up from the sun with hats, sunblock and special UV protected clothes because the UV light from the sun can cause her disease to flare up.
*Has been on at least 10 different medications
*Has had to deal with the extreme physical & emotional changes that the steroids (that her body desperately needs to stay healthy) have caused
*Spent over 40 hours in the car going to and from doctors appointments
And yet she still smiles and hasn't
let it effect who she is as a person.
Pretty amazing huh? She has grown up so much in this last year and dealt with more things than any 7-8 year old should but we are so proud of her! Our only hope is that her body can continue to get stronger so that we can hopefully eradicate the JDM from her body cause JDM SUCKS!!
Unfortunately this summer has been a bit rough on Kylie's health. She has had a yucky cough (that goes back and forth from being a 'wet' cough to a dry 'barky' cough) for over four months now. We have done numerous tests and xrays but the cause is still eluding us. The results from her recent CAT scan showed signs of 'retracting pneumonia' but we can't figure out what is causing it which means we can't prevent it either. We would appreciate all the prayers and good thoughts you can send this way so that we can get this thing figured out!!
All year long we have been saving all of Kylie's medicine containers so that we could add up the amount of pills she has taken over the course of this treatment. Kylie decided that to celebrate her one year JDM anniversary, she wanted to shoot those pill bottles and show JDM who's the boss :) What can I say, she's her father's daughter through and through lol! Not only did she get to use her own .22 rifle but with daddy's help, got to shoot some of the bigger guns as well. *Please note that Matt was right there by her at all times and all safety precautions we taken.*
Thank you so much for taking the time to read this post today, it really means a lot! This last year has been quite the experience for our family and we couldn't have done it without all of the love and support from our family and friends.
*For more information about Juvenile Dermatomyositis please visit the Cure JM Foundation website!*
*If you would like to show your support for Kylie by making a donation (any amount is greatly appreciated!!) to the Cure JM Foundation through her fundraising page, please JDM SUCKS.*
If you would like to start at the beginning and read my first post about Kylie and her diagnosis of JDM click HERE.
Saturday, August 27, 2011
Join us tonight RIGHT HERE in the TSG forum for our release party chat! Be among the first to see the new sets in their entirety before they are available for purchase and who knows, maybe you will be the lucky chat participant that wins all three of the new sets!! :)
It's party time, woot!!!
Created by There She Goes Clear Stamps at 3:42 AM
Thursday, August 25, 2011
Today is our last and final day of sneak peeks before the big release party on Saturday. The set we are showing off today is sure to get you in the festive autumn mood :)
If you made your way here from Iwona's blog you are right on track! If not, you may want to head on over to the TSG blog for all of the details about this hope as well as to find out how you can win the set being shown today.
Pumpkins On The Vine is a 4x6 set that includes a total of 15 stamps and will sell for $15.
I absolutely love this new set illustrated by Torico and I can guarantee that you are going to love creating with it! All of my images were stamped with Momento Tuxedo Black Ink, colored with Prismacolor pencils, blended with OMS, cut out and adhered to the card base using dimensionals. Well, except the leaves. They were stamped directly onto the card layer and then colored :)
The next stop on the hop is Jodi, thanks for stopping by!
Pumpkins On The Vine Sneak Peek
Wednesday, August 24, 2011
Fabulous is a 4x6 set that includes a total of 13 stamps and will sell for $15.
I created a set of three quick, easy and beautiful note cards that can be whipped up in no time! I added a little bit of sparkle with a Stardust pen as well as some rhinestones to give the cards some extra depth and texture.
(the little flowers stamped on the background in brown are from the set Day Or Night)
Now hop on over to Jessie's fabulous blog :)
Fabulous Sneak Peek!
Tuesday, August 23, 2011
It's day one of the TSG Blog Hop Challenges where you will get sneak peeks from the Trendsetters showing off new stamp sets that will be released this Saturday :)
Did you make your way here from Iwona's Blog? If so, great! If not you may want to head on over to the TSG Blog for all of the details about this BHC as well as to find out how you can win the set being shown off today!!
The first new stamp set we are showing is called Beautiful Day and was illustrated by Di Carubia. I love that this set was created with the intention of being able to be used with the other stamp sets that Di illustrated for TSG including- The Fairy Best and Once Upon A Time!!
Beautiful Day is a 4x6 set that includes a total of 10 stamps and will sell for $15.
I actually used 8 of the 10 stamp sets included in this set for my sneak peek card. I love how you can create a multitude of different 'main images' simply by combining the images included in this set in different ways! And how much do you love the stone wall?? That is a background image that can be stamped over and over to create a wall that looks like it is just one piece!
There was a bit of masking involved to create my window scene but it was so easy that anyone can do it! All images were stamped with Momento tuxedo black ink, colored with Prismacolor pencils and blended with OMS. The sentiment was stamped onto thin white card stock, trimmed, gently folded into a ribbon shape and sponged before being adhered to the card base.
The next stop on this hop is Jessie, thanks for stopping by!
Beautiful Day Sneak Peeks!
Monday, August 22, 2011
Yippee, it's release week! The sneak peeks will start Tuesday for the three fabulous stamp sets that will be released this Saturday but today we are going to start off the fun with this inspiration challenge :)
Make sure you stop by the TSG Blog for all of the details about this challenge as well as to find out how you can win a TSG gift card simply by playing along!
I am the host for this week's challenge and I chose these adorable PJs that I got for my youngest a few months ago. I looooove them and so wish I could get them in my size lol!
And here is my card. I think that it's pretty self explanatory what parts of the inspiration image I based this card on ;)
Ink: Momento Tuxedo Black, Coral
Paper: White, DP scraps from my scrap bin
Paper: White, DP scraps from my scrap bin
Accessories: Corner rounder, SU scallop border punch, sewing machine, sponge, Prismacolor pencils, OMS
TSG121: Inspirational PJs
Tuesday, August 16, 2011
It's Tuesday which means it's time once again for a challenge from Ribbon Carousel! This week we have a sketch that was created by Danielle (aka Pickle ;). Hop on over to the RC Challenge Blog for all the details about this challenge so you can play along with us :)
Also this week, we are sponsored by Amber Ink!
Ok, so I have a bit of a confession. I was having so much fun coloring the girl from the the Hostess With The Mostest set that I had my card completely done before I remembered that it was a sketch challenge lol! So this week I only have half the details right ;) Oh well, it happens (sometimes more often than I'd like lol).
Here is my card anyway-
Thanks for stopping by!
RCC16:Sketch (Amber Ink)
Monday, August 15, 2011
I added lots of texture to this card by stitching the DP panels, adhering ribbon that was wrapped in embroidery thread, buttons, rhinestones, diamond glaze and of course a little sparkle from a stardust gelly roll pen :)
Hope you enjoyed checking out my card today, thanks for stopping by!
TSG120- Color Challenge
Tuesday, August 9, 2011
This week our challenge over at the Ribbon Carousel blog is brought to us by Jessica Diedrich and she wants us to get edgy with our cards! This can be anything from altering, distressing, stitching edges on your card or by using an edgy character. And don't forget- your card has to have some type of ribbon/twine/string etc. on it too!! You can read all the details about the challenge right here on the Ribbon Carousel Challenge Blog.
This week our sponsor is The Greeting Farm and I couldn't be more excited to finally get to color in one of these adorable characters!
For my card, I chose to use the super sweet HG Classy digital image which you can get right here. I printed off a few extra images just as well just in case I happened to make a mistake and as soon as my girls saw them they begged to color one and make a card too. Who am I to crush their young card making dreams?? ;)
Here is my card-
Here is Kylie's card:
RCC15: Get Edgy!
Monday, August 8, 2011
Hello everyone, I hope that you all had a great weekend! It's time for a new TSG Challenge and this week it is brought to us by our featured Trendsetter Tammy. She has designed this great sketch that you are going to love to create with!
Make sure you stop by the TSG Blog to find out all of the details about this challenge as well as to find out how you can win a TSG Gift Certificate simply by playing along :)
I chose to use the mini set Vroom for today's card because that cute little car is so much fun to color! There is something about this card that doesn't quite mesh but I can't quite put my finger on it. I think that maybe I should have used white to mat the pink layer instead of black? What do you think??
Ink: Momento Tuxedo Black
Paper: Kraft, Black, White, DP from my scrap bin
Accessories: Prismacolor Pencils, OMS, Nestabilities, circle punch, ribbon from Ribbon Carousel, button, white twine, dimensionals, scallop corner punch, SU scallop border punch
Tuesday, August 2, 2011
Hi everyone, welcome to another week of inky fun! It's time again for a fun Ribbon Carousel challenge and this week it's an easy one- anything goes :)
Every once in a while it's fun to play with images from other companies and now that the Ribbon Carousel challenges are being sponsored by various companies, I get the chance to do that more often! This week the RC challenge is sponsored by EAD designs and if you aren't familiar with their products, you will definitely want to check them out!
E.A.D DESIGNS allows you to change the look of any room in just a few minutes. Our Products can be used on more than just walls and on many surfaces. Our customers are always coming up with new and fun ideas to use our products. Founded in 2004, Emily has grown her business to now include a Custom Art Design Center and Papercrafting RubOns, Stickerz and Printed Wall Art.
Your creation can be anything from cards, quilts, sewn items, paper crafts, paintings, anything will work! We can't wait to see what you come up with!
*** Please remember that your creation must have ribbon, bakers twine, jute twine, lace (basically anything that comes on a spool). ***
I had a lot of fun playing with the stickers I received from EAD Designs and here is one of the cards I made.
The set of stickerz I worked with is called The Seed Of Hope and I absolutely love the images and sentiments included! It's been soooo long since I have worked with any stickers so I tried to use them in place of stamps. The great thing about these is that you can color them with Copics! I created the ribbon flower from some gorgeous satin ribbon and using a button for the center. I then pleated the satin/grossgrain ribbion on one side of the card before wrapping around the entire layer. Check out the Ribbon Carousel website to pick out some fabulous ribbon to add to your collection :)