Tuesday, August 17, 2010

CONTEST!!!!!!

I'm ready to give you a $10 gift card to Starbucks!! Wanna know how you can win it?! It's easy! All you have to do is go to my FB profile and click on the Make Juvenile Myositis a Memory link. Then log in and vote for Juvenile Myositis. After you've done that, you need to share it on FB so all your FB friends can vote, too. Then post to my related status update that day that you voted. The person who votes and shares it on FB the most until the end of the month will get a $10 Starbucks gift card from me. I promise!

If Juvenile Myositis stays #1 or #2, it will win $250K from Pepsi to go towards research to help find a cure for this disease. Our pastor's son, Sam, has this horrible disease. Today Sam is at the hospital for his weekly infusion. Yes, you read that right...his WEEKLY infusion. Below is something his mom, Charity, wrote to help people know more about their journey:

Brief JDM Timeline + Request for help

by Charity Blosser on Friday, August 13, 2010 at 2:38pm

Several of you have walked through this JDM journey with Sam and us, but some of you are more recent friends.

For those of you that are unaware:

July 18, 2004- Sam was born a healthy, happy baby.

He was also a particularly healthy toddler.

October, 2006-Sam develops a slight rash on his face and knuckles.

2007- he stops growing, starts falling a lot, the rash persists. (The doctor thinks it eczema.) We're also told Sam's hips are shaped funny.

May, 2008- Sam can hardly walk. He asks to be carried constantly, is lethargic, fever everyday, can no longer bend down and pick up toys, can't get up from the ground on his own, can't stay sitting up with feet straight out in front of him, cannot jump, run or climb stairs. I remember he spent most of his time bent over the couch sucking his finger because he couldn't climb up or sit down.

The doctor sends us to children's hospital to test for Muscular Dystrophy.

Negative.

His knuckles swell and his joints hardly work.

He is in a lot of pain.

The doctor sends us to the Pediatric Rheumatologist to check for arthritis.

August 7, 2008- Dr. Higgins diagnoses Sam with Juvenile Dermatomyositis.

In time, we learn there's no cure, it's rare and life-threatening, and they don't know much about it. They HOPE it will go into remission in two years, but there's no guarantee of anything.

Here we are almost two years later. A few months ago, it looked like Sam might be heading into remission, but he had a flare up and we're back to weekly infusions and upping his medication.

He's been in lot of pain lately. He wakes up at night in excruciating leg pain, he tires quickly, he has to ALWAYS protect himself from the sun with long sleeves, pants and wide-brimmed hats. His arms hurt, his back hurts, and he started developing ulcers. He's very emotional due to the steroids as well. The Medications he's on are not without their risks, but I'm not up to listing all that right now.

************************************************

Edited to add:

(Written by a friend)

CureJM, a 501c(3) nonprofit organization, was founded in October 2003 to raise awareness of Juvenile Myositis (JM), a rare, painful and potentially deadly autoimmune disease that's expected to strike 1000 next year. CureJM is dedicated to finding a cure so that no child suffers another day with JM.

In the Pepsi Refresh Project (good ideas competition), vote daily. PLEASE, for the sake of sweet Sam and every other child who suffers with this awful disease!

Spread the word! VOTE 3 WAYS DAILY --

(1) Pepsi Refresh website -- http://www.refresheverything.com/makejmamemory

(2) Pepsi Refresh FB App -- http://bit.ly/CureJMonFB

(3) Text to Vote -- Text* Pepsi (73774) & put 100850 in the msg box -- (*stnd txt msg rts apl)


Now - go to FB and my profile to get started! You can vote directly through FB, text and/or sign up at the website.

**I guess I should add here, too that my Grace Central peeps don't get to play, because you're already voting!! :-)

Tuesday, August 10, 2010

Daddy's birthday...

Jonathan subtly let us know this morning that he'd like a cake for his birthday. :-) I was planning to make him one...his favorite - a boxed chocolate cake with white icing. The girls were more than excited to help me make it. Emma was really worried I would make it without her, since she had a playdate planned this afternoon. I assured her I would wait! :-) I was trying to get my make-up on and finish getting ready for the day while the girls were coloring. It got quiet, as it does sometimes, and I began to look for the girls. They were in the corner of the family room just looking up at me. Emma was sitting with her hands behind her back and Kate was standing there just looking at me. I asked Emma what she had behind her back and she finally pulled out the icing. The foil was peeled off and it looked like I had gotten there just in time. It was all I could do to not laugh out loud. I asked her what they were doing. Her response was, "We were getting everything ready for you." LOL! They had taken the cake powder bag out of the box and the foil off the icing. I'm fairly certain had I not got there when I did, we would have been making a trip to the store to get more icing. But as it were, the icing was totally intact! :-)

Emma decided Jane should try the cake batter! LOL!


And Jane liked it! :-) She kept licking her lips! (Don't worry - she didn't get much...just a little taste)

The girls liked licking their beaters!

And here is the finished product! Emma helped me with the icing.

I really need to learn to let go when the girls are helping me in the kitchen! I tend to want it to look pretty, but it's not always going to when they help. I did let Emma help me a little with the icing, but I had to finish it so it would look somewhat decent. I probably should have just let her do it. Jonathan would have loved it no matter what. :-) I'm gonna try to let it go next time!!

Wednesday, August 04, 2010

Yes, I'm still committed....

I've not forgotten that I said I was re-joining the blogging world. :-) If I could find the camera, I'd take a picture of all the boxes that I'm currently surrounded by. This past weekend we moved into a new house. We had only been in the other house for a year, but we were renting and we are now home owners in Ohio! (Yes, for those of you keeping tabs, we are now home owners in 2 states. But we'd prefer to just own the one in Ohio. So if you're interested in buying a house in Charlotte, NC, let me know!)

Moving with 3 small children, with one of them being an infant, was as difficult as I thought it would be. Or maybe I should say it IS as hard as I thought it would be. Until we are mostly unpacked, I'd say we are still moving. It wouldn't have been my first choice to move right now, but it is what it is. And the Lord knows what He's doing. As hard as it's been, I really feel like the house we got is going to be great! And we wouldn't have gotten it if things had been different.

It seems like the whole house situation has been consuming me since about March. But other things have been going on that I don't want to forget.

Emma finished her first year of pre-school in May. She will be old enough to go to kindergarten this year, but we are holding her back one year. With a September birthday, she would be the youngest in her class. I think she would be fine going to kindergarten, but I want her to be better than fine. :-) She also just finished her first set of real swim lessons. And I have to say that I was really impressed!! She went from not wanting to put her face in the water to swimming underwater in just 6 short weeks! In 3 weeks she goes back to pre-school. She will be going 4 days a week this year. I have this picture in my head of my body standing in the middle of a field. Time is whisking by me so fast that I have a difficult time just standing there, but my body can't move to catch up. It goes by so fast, doesn't it?!

Kate has turned into quite the 2 year old. :-) Everyday, I keep asking myself what happened to my sweet Kate. LOL! She is still pretty sweet, but she is definitely showing her independence. She patiently sat on the side of the pool with me while Emma had her lessons. I tried to let her swim a couple time a week. I think she loves the water more than Emma. She'll stay home with me another year and start pre-school when Emma starts kindergarten. I'm looking forward to some time with just her and Jane.

Jane. What to say about that sweet girl?! She is 10 weeks old today. Again - the image of me standing in the field... She had her 2 month check up yesterday. She weighed 10 pounds 1 oz and is in the 45th percentile. WHAT?! I've never had a child in the 25th percentile, much less 45th for weight!! :-) She's started to smile and coo and even laugh a little. She loves the swing and just looks up at the seat and just smiles and even kind of laughs. Out of the last 7 nights, she has slept all night 5. Last night there was a HUGE storm with lots of lightening and some of the loudest thunder I've heard in a long time. It woke her up and she couldn't get herself back to sleep, so really last night doesn't count in the number of nights she's slept all night! ;-)

Well, this post is much longer than I intended it to be! I should get back to unpacking..........

Saturday, July 24, 2010

Making Memories...

I've been watching the girls differently lately. I've been watching them in slow motion and in memories. What does that mean, exactly? I've been watching them in a way that I don't want to forget. Like this evening - We walked to dinner and then to get ice-cream. On the way home Emma was chasing a flower that sheds off of a cottonwood tree. They are pretty light and kind of float like butterflies. She was looking up, chasing it with her hands in the air. Her eyes were lit up and she looked like a little girl should in the summer. I don't want to forget, but I fear I will. This is why I think I have to start blogging again...so I don't forget.

To resurrect or not?

So...I've been thinking lately that maybe I'll start blogging again. But there are so many things to consider and the first is are you still reading or am I still in your Google Reader??? :-) And the second is where to start. I suppose I just start from today. It's been so long since I blogged that it would take too long to catch you up. Besides, you're probably also on Facebook and you're probably mostly caught up anyway! ;-) So...here's to blogging again!