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Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Saturday, August 6, 2011

Air Condition is a Nice Thing!

        With Lyndsey's move and the storm Wednesday night my post have been delayed. We lost electricity at midnight on Wednesday and it was finally restored today on Friday around 6:30 p.m.  We were so fortunate during the April tornadoes with only a three hour outage that I couldn't help think of those who went weeks without power.
        There was no rhyme or reason to this power outage.  It was so crazy our next door neighbors had power and two doors down had power but the rest of the street had nothing. I notice one neighbor next to us had an extension cord running across the street to help a neighbor probably with a freezer. Just a tiny glimpse of all the kindness,  like during tornado times, was reflected in that cord crossing my street today....warmed my heart while remembering those tragic times filled with the window of awesome kindness among neighbors.
   Speaking of kindness.....Perry was so kind of turning over his house to us while waiting on the power to return.  Perry was out of town but invited us to use his house. So this afternoon when we finally decide the heat had about done us in  and we decide to go over to his house. It was raining and we had finally gotten Dake in the house. We had to take the portable ramps cause of a few steps. David had just sat down to rest and the my cell phone rang. Mom called to announce the power was back. Yay! Gracey said," If that is all it took for it to come back on we should have come over earlier."
      As I writing. this...two hours after the return of power ...we hear a POP and we are now again without power....uggggggh.
    Here we are sitting in the dark again......sigh  I am literally typing on the remainer of my  battery juice.
     Dake's whole life revolves around electricity....he has not had a shower since Wednesday....we are not sure if it is him we are smelling or spoiled food. He can not tolerate the cold water.   He is on his computer most of the day or watch a movie but the most challenge part is his chair is electric.  So no power + Dake = frustration.
      Tomorrow we had plans to take him to the church to bathe him. The church has showers that might work. It has to have enough room for three atleast. Right now it looks like those plans are currently back on. (That is, if I do not put him out in the rain because he so grumpy.) (His new grumpiness  is because of the new power outage ....he is not a happy camper.)
      Phillip has just arrived to visit with Dake and Lyndsey.  He comes in with a smile and flashlight. His trailer had been damaged by a fallen tree and he had his very last final exam before graduation. So he doesn't care about our conditions as long as he doesn't have to worry about school.. So all is good!
   So playing cards by candlelight is on again tonight.....Time 8:35.........several games of cards have been played........
Time 11:42 p.m.  Heading to Perry's house again.....Good thing Perry is not there or he might not answer this time.    
   Ahhhhhh! back in the nice coolness. Perry's house is cleaner than mine we might just stay.
    This is so crazy. 
    Now the food we were able salvage from the first outage is probably not going to make it for a second round.
    At  least Dake is happier now (he is watching  American Pickers)..... but we just discovered we forgot his :"Ernie"......OOPS!

The second outage last 14 hours.......we are now back home trying to clean up the damages....ugggh.

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