Thursday, October 29, 2009
Tuesday, October 27, 2009
Her name is Sophia.
On September 24th, 2009 we received a knock on our side door. It was a friend of ours Dave. He said he had run into a couple of bike riders from NY and that he invited them to come to our house for a nice bonfire in the city. We have a great view and a cozy backyard with plenty of seating. So this became an impromptu gathering of friends to welcome two strangers. When they arrived it was just a nice sit down and chatting, then they told us the story of Sophia.
"Sophia has Spinal Muscular Atrophy"
What is this we asked?
In her case she has a form of SMA that is diagnosed to be terminal in the first 2 years of her life.
They are riding from NY to California to raise money for a clinical trial being done in California. As they ride for a cure for Sophia they are also sending off Ryan as he readies himself for the Marine Corp which he reports to in November.
These two are making an impact in the lives of this family and their friends and ultimately have shared with us their experience and their journey. I am touched and inspired.
I didn't know anything about this disease, I had never heard of it before this encounter.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.Sophias Story can be read here: http://sophiascure.com
The journey of the two riders can be read here: or linked to through the main site above. I wanted to write this to ask to spread the word. Maybe someone can help them more than the few dollars I have to offer, Maybe I can spread the word to those who stop by here. Maybe by writing this someone will become inspired to say something to others that can make a difference and Maybe, just Maybe they can find a cure for Sophia.
Ryan and Dennis, May you find a grand adventure on your journey to California!
Wednesday, October 21, 2009
Wednesday, October 14, 2009
Next I need to work on my cooking of the Butternut Squash. I hear you need to skin it, cube it and roast it. What is your suggestions for this dynamic gourd. I am used to seeing gourds dried out and made into some sort of musical instrument, like the "ipu":
I would show you the yummy result of my eggplant cooking, but we ate the evidence with friends before I remembered to document it. =) Haha, it really was yummy.
How do you like the new header? =)
Monday, October 12, 2009
Here is my angst. I feel so disgusted with people that find it is an appropriate place to make statements of "look what you've done" and "this is all your fault" and "Are you happy now" or "you just want to be on Reality TV". The Stansel family is grieving for their four young children and I find it appauling that this is the moment someone feels inclined to throw their grief in their faces. Of course ALL of the negative comments came anonymously with no allowable way of responding to them. This I feel makes for cowardice actions. If you can so proudly speak your views then why hide them from the public on who is saying them?
Why do people feel as though through anonymoty it is okay to voice inappropriate comments to anyone. What if this were your own family, your friends or yourself.
Regardless of my own views I stopped by to give the family my condollences as they grieve a great loss. There is no question that this family loved these children. They were not specimens to them with letter designations of Baby "A" "B" "C"....and so on. They had names, hearts, a family, a mother, father and siblings.
In Blog land, I think it would be nice to realize that there should still be respect for each other, each others views, and realize that this still falls under social protocol. You don't have to agree with those that you pass, but that doesn't mean "free for all" to tear them to the smallest pieces. Arguments can be made intelligently and with great respect for others. If you wouldn't say it directly to someone face to face, then don't say it at all.
Thats my Rant,
Sorry if I offended anyone, I just needed to get this off my chest.
So here is the winner:
A Duck in Her Pond is a fantastically unique blog that includes stories and happenings from the published writer Miranda Koerner. I stop by there to read such neverending stories as Twirl, The Old House on Elm Street, The Gift and The Coconut Queen. But that's not all! She writes of Waffles, Peanut Butter and Ribs...BBQ that is! She is worth the follow. So props to her win, and I humbly will send her the prize wondering if she will use it to warm her Bitty and Bear during the cold winter months after they have a long day of adventures. Congratulations Queen of the Pond, you deserve it!
My email address to give me the place to mail it is antibloggedy (at) gmail (dot) com I hear this is how you must put your contact email now as there are computer programs that seek out the email links on peoples pages and automatically use them to send spam (no, not the meat in the can!) and other non-interesting emails!
Friday, October 9, 2009
Tuesday, October 6, 2009
I want to show my appreciation to my blog buddy readers and what better appreciation than the gift of warmth! Its a warming pad (homemade of course!).
Winner announced next week Monday 10/12/09. I will choose my winner randomly by scientific elimination (name on paper, placed in box, shaken around, kid pulls out name, winner announced) I am not fancy but it gets the job done. Promise to be fair.
Please Place your comment and say hello, that's all! Comments left on this post prior to Mondays drawing will be given an entry. One entry per blogger. =)
Heres the quick tutorial (by no means am I a pro):
(supplies I used) I used cotton Fabrics because they work best with mild heat.
8x4 approximate fabric cut of corduroy
9x5 approximate fabric cut of your choice patterned/plain fabric
Sewing Machine, Scissors, 1/2 cup-1 cup rice.
You can make this in any size, but as you make it bigger you will need more rice.
Step 1-3 Making the bag that holds the rice
Make a fabric pocket to hold the rice. Take your corduroy or other cotton material, fold over and stitch close two of the three open sides. You should have one opening for the rice to be poured into.
With your pocket, fill the pocket with approx 1/2 cup to 1 cup rice so the pocket is filled less than half full. You don't want the bag to be filled all the way for several reasons.
A> You want the bag to lay flat and the rice should be able to extend throughout so it is comfortable and as flat as possible
B> Your bag will distribute a better heat source when it is not as full, providing you with more comfort and using less time in the microwave.
Stitch your sides closed. I make sure to do a double stitch (meaning I used the reverse setting on my sewing machine and go back over my first line of stitching). There might be a sewing technical term for this, but I don't know it the way pro's know it, I guess.
Step 4-5 Making the "pillow case":
*NOTE: The pillow case is there to provide a washable cover.*
Take your 9x5 cotton Fabric (use your favorite pattern or plain color for design). You will stitch on all four sides to create a hem.
Step Five: Fold over the two sides to where they meet and have a slight overlap and stitch this on both sides so you create a case that has an opening for your heat pad.
You are done! All you have to do now is put your rice bag and place it in your pillow case!
For a mild moist heat, place this in the microwave for approximately 1 minute. DO NOT GET WET!!! The Moist heat is natural. Be careful, due to different microwaves you may need to increase this time or decrease this time. Please be careful not to make the bag to hot, because when you put it on your skin it could be too hot! (you know all that It's common sense stuff)....here is more: Don't place this on young children...Use COMMON SENSE! Make sure it is not TOO HOT! let cool down if you think it is too hot, before use.
For me, the bag creates a perfectly nice warm heat that feels great on my muscles after a tense day with the kids.
AT ROOM TEMPERATURE/DO NOT HEAT You can use to make a weighted eye and forehead mask that creates that small amount of pressure. For this you would need to play around with the size of the pocket and the amount of rice. If you have basic sewing skills, then you should be able to do this in no time!