Saturday, May 15, 2010

Drum Roll Please...

We did it! We reached our goal of $500 and we are only half way through the month! I am truly amazed by the way our story has spread. The generosity of all of our family, friends, and, most surprisingly, strangers has touched me so much. When I first decided to participate in this fundraiser I was a little apprehensive. It isn't easy to ask for money, no matter what the purpose, especially in this economy. I felt that a goal of $500 may be too much. I was worried asking for donations would turn people away from our story. I can not tell you how happy I am to see that my worries were unfounded. I am just so proud! We are doing such a good thing for our children with PWS, and future children. Not only by raising money for a cure, but by getting awareness out there. So many people are still in the dark about this terrible syndrome.
I want to encourage all of you readers to continue educating the public about PWS, even after this month has passed. Tell them our story. Show them this blog. I am always happy to speak to anyone with questions.

I would also like to see how far we can raise past our goal. Right now we are at $500, can we make it to $750 or $1000. I am eager to find out. Every dollar is one step closer to a cure. I am also beginning to think of ways to raise money and awareness throughout the year, not just May. All ideas are welcome!

Some Delilah updates: She is starting to 'Army' crawl. She has done it a few times in the past few days. So exciting. It is great to see the determination on her face as she gets closer to a toy she wants. I was unsure if she would be this mobile before her first birthday. I am so glad to see she is and may be fully crawling by then.

She is also learning to clap. We have been playing Patty Cake and she gets so excited. She will keep one arm still and swing the other one like crazy trying to get her hands to meet in the middle. It is ADORABLE! And she loves to babble. It is almost constant now. Before she would do it maybe once a day, but now she wakes up babbling and goes to sleep babbling. I think she is going to be a talker just like her Momma. I can't wait to see what she does next.
I would love to hear from all our readers. Please feel free to post a comment and say 'hi'.

Thursday, May 13, 2010

Such Wonderful Support!

Wow! I am so thrilled with the support we have received so far in our challenge to get PWS awareness out there. We have already reached 20% of our goal. Thank you to all who have donated so far. Our story has also started to make its way around Facebook. The creator of Kigi's Boutique has graciously decided to help our cause by offering to donate $7.00 from the purchase of each Create Your Own Crochet Beanie with Crochet Flower, found here. How AWESOME is that?!? Not only will you be getting the cutest Beanie ever, but you will be helping us find a cure for Prader Willi Syndrome. Thank you so much Kigi's Boutique. ***As I have been typing this we have received another donation. Woohoo!*** Please continue spreading the word about PWS. Donations can be made here. THANK YOU, THANK YOU, THANK YOU!!!

Sunday, May 9, 2010

Extreme Home Makeover

I hope everyone watched Extreme Makeover Home Edition tonight. If not, you may be able to watch it online. I will be honest and say it wasn't easy to watch. I can't tell you the number of tissues I went through. Probably half my box. But I am glad I did watch it. It really opened my eyes to some of the challenges Delilah may face in the future. Every child with PWS is different. The severity of the symptoms can vary from one child to the next. However, the constant hunger is usually always a similarity with our children. We pray that Delilah will have a "mild" case (whatever that is), but we have no idea what the future holds for her. All we can really do is take it one day at a time. We will continue to provide the best for her, be that weekly therapies and trips to Gainesville to see Dr. Miller or just a cuddle on the couch and a face covered in kisses. Whatever she needs she will get. We will also do our best to be an advocate for her. People need to know what Prader Willi Syndrome is. People need to see what challenges it presents our children with. Knowledge is power, and we need that power to find a cure. So please, please, please help us spread the word about PWS. Feel free to forward this blog to everyone you know. There are great websites that have loads of information; PWSA and FPWR. Plaster Facebook with information about PWS. Just help us get the word out there, especially this month. Thanks to everyone who has already done this. You have no idea how much that means to me. 

Just on a side note, I really loved the Safe Pantry. I see a kitchen remodel in the future! 

Saturday, May 8, 2010

Mother's Day

Today was a beautiful day! My momma came in town this weekend to celebrate Mother's Day with us. So we decided to celebrate today, since she has to drive back tomorrow. It was a wonderful day! 

We started the day with a trip to Springville for the Homestead Hollow Springfest, which is basically a giant craft bazaar. It was AWESOME!!! We strolled from booth to booth on the most beautiful of days. Delilah was the bell of the ball, as usual. People couldn't get over how adorable she is! She was so happy to be in her stroller. She loves to people watch like her Mommy and Daddy. After we browsed all the booths and ate lunch, we decided to stop by the little creek and take some pictures. As most of you know, getting a 10 month old to smile for the camera is pretty much impossible, but we were able to snag a few good shots. 

After the beautiful morning in Springville, we headed back to the house for Delilah's nap. It was so nice outside, I turned off the A.C. and threw open all the windows. It is so nice to air out the house. It has been so hot lately. I tried to keep the A.C. off as long as possible, but little Delilah gets over heated easily. So we had to turn it on for the first time this year on Monday. Hopefully it will stay this nice for a little while so I can keep it off. 

After Delilah's nap and afternoon snack of cheese and crackers, we decided to check out the new mega baby store, Buy Buy Baby. One word...FABULOUS! Ten times better than Babies R Us, and let me tell you I am a Babies R Us junkie. I have never seen a nicer baby store. So organized, so neat! I loved it. And the best part is they have the car seat we are going to be getting Delilah. I won't have to order it online and I have a 20% off coupon. Woohoo! If any of you have a Buy Buy Baby near you I suggest you RUN to it! It is lovely! 

After the mini shopping spree (just kidding John, we only picked up two small things), we headed out to dinner at Bonefish Grill. Our first time to this restaurant and we were very pleased indeed. The bacon wrapped sea scallops as the appetizer were delish. It was also the first time Delilah sat in a highchair at a restaurant. She was so well behaved. While we waited for her dinner of grilled chicken and steamed veggies (yes, she got her own meal), she snacked on a few Puffs and played with some toys. The table next to us was in awe of her good behavior and her ability to eat table food so well. Always the center of attention, my little one. She didn't fuss at all! I can take this kid anywhere. 

After dinner we headed back to the house with a quick side trip to Dip-n-Dots, a favorite of my Momma's. After she ran in to grab our treat we were home. Delilah had her night time bottle and now she is soundly asleep upstairs. 

I really, really, really enjoyed this day. I was worried that Mother's Day was going to pass without much of a fan fare, but I am so happy it didn't. I am so happy to be a Mother, especially to my little princess. I couldn't imagine life without her.  

******DON'T FORGET: Extreme Makeover Home Edition, featuring a family with a PWS child, will be on ABC tomorrow night at 7:00pm CST. I will be watching along with you, with a full box of tissues in hand.*******

Wednesday, May 5, 2010

Awareness/Fundraiser Challenge

Alright friends and family, I have a challenge for you. May is Prader Willi Syndrome Awareness month and I need your help. I have set up a fundraising webpage to raise much needed $$ for research. WE NEED A CURE! Every little bit counts. But I need your help getting the information out there. Please, please, please spread the awareness of PWS to everyone you know. You can send them my blog, my webpage or my email address. I am happy to answer any questions about this life long syndrome. I have set my goal at $500, but would love to exceed that. You can get to my fundraiser page by clicking here. Thank you to everyone for all your support.