Monday, October 25, 2010

EB awareness week!

This week is EB awareness week! EB stand for Epidermolysis Bullosa. It is a rare, genetic skin disease that involves the connective tissues of your skin. The slightest friction to the skin can cause severe blistering. The EB kids are referred to as 'Butterfly children' because their skin is so fragile. To learn more go to http://www.debra.org/. I came across this disease through a blog about little Jonah. You can follow Jonah by clicking on his picture to the right. I have since come across several EB kids that I follow on a regular basis. EB is a horrible, painful disease. This week I will be running in a 5K race in support of EB. A few of my friends from work and myself made shirts that have the kids we follow on the back. Unfortunately shortly after the shirt was made little sweet Bella passed away. She was at the University of Minnesota for a clinical trial for an EB bone marrow transplant. I think she was patient #12. So far this is the only hope these kids have. I miss Bella - I didn't know her but I followed her through her EB journey and all the EB babies have such a special place in my heart. Many kids do not live very long and if they do they are in constant pain. We need help to find a cure. I am collecting donations to do to debra.org for more research to be done for EB. So if you would like to donate please leave me a comment or email me please. Any little bit will help.

Back

Front

This Friday I will have the pleasure of meeting Bella's parents and sister Ali; and little Jonah and his mom and dad. Their is an EB gathering in Winston Salem, NC and I feel very blessed to be able to go. These children are beautiful and have amazing families!!!! They have brought a great appreciation to me of the simple things in life and have helped me to put a lot of things into perspective that wouldn't be otherwise. Please help support research to find a cure for EB.

Tuesday, October 5, 2010

Labor Day Weekend

Labor Day was over a month ago, but here's what we were up to:

I ran in another race, this time the Apple Festival 8K. My time was 49:33. I was happy to be under the 50min mark. It was the hardest race I've done thus far. It had quite a few hills and was rather cold and windy that morning. Next up - a 5K race on the 30th to support EB kids (see my side bar).

A picture that was taken at the finish line

Then after the race we headed up to Big Creek on the NC/Tenn border to go camping with Jared's family. We had a great time. We took some adventurous day trips up windy dirt roads but it was worth it for what we saw:


Elk have been reintroduced into the wild in this area - they first started out with 17 I think and are now over 50.
Max's Patch - what a beautiful view. I will be happy to take any that want to visit me up to this place for a picnic.
The cousins
Eli & mommy taking in the sun and fresh air

Hiking down
Arts & crafts - thanks to Aunt Emily & Jenny the kids were very entertained while camping!
Adley's creation
Aidan's spikey apple
Playing in the river

Moving

Phew! - I am glad that moving is over......for now anyway, I will be really glad once we are in our new house. We moved over 2 days, which wasn't quite long enough...we worked up until the last minute. Good thing we had been taking small loads in the van to the storage unit for a few days. We had some help from church and Jared's dad. The kids hung out and played with what they could. They all wanted to 'help' a little too. They loved the big moving truck and especially running up and down the squeaky ramp - Ugh! Moving in the rain is not fun! It rained for both days. Sometimes a sprinkle, sometimes a downpour. We have our things spread between 3 places now - storage, Jared's parents house and their business. I think we have found most of the necessary stuff for now. The kids are adjusting well, but bedtime is proving to be more and more difficult most nights. I know the move has been hard on them too so I'm trying to be patient but it's hard. We are grateful to Jared's parents for letting us stay with them, I just hope we don't wear out our welcome too quickly. In the week we have been here Eli almost dumped over the file cabinet (4 cabinets high) which knocked an oil lamp off the wall and spilled almost of gallon of yummy vegetable soup from the fridge 'trying' to get it out himself. Pictures from our move.

Liam eating lunch while we worked - poor kid was contained somehow for 2 days straight so he wouldn't get hurt. He's glad he gets to roam now.
Playing in the boxes
Eating dinner
Contained again
Piles of stuff everywhere
More stuff - we got rid of a lot but we were still amazed at how much stuff we had. Living in the same house for 7 years and adding 3 kids while in that house can do that I guess.

Eli, the moving truck & the squeaky ramp!
Unloading in the rain - miserable!
Rainbow

They have applied for the permits for the new house and once they get those they will get the foundation survey done and start the grading. We will keep you posted through pictures as to the progress of our house. We are so excited. I know I am way behind in posts from the last 2 months. I will try to post that soon.