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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.

Thursday, July 12, 2012

A VERY Stressful Day for Dake

A VERY Stressful Day for Dake

Talking about stress, Dake had a major stress moment on Tuesday (July 10).  The lady (an angel in my opinion) who comes and helps us out with the house and Dake was at our house.

 Dake has a station set up for him in a small room off the kitchen. This is next to his bedroom and kinda gives him his own personal space yet still in the house.   My dad custom made him a table (desk) to house his computer, television and a telephone. The garage is off this room and he will go outside often and enjoy the sun.  This is the way he goes to get to the front of our house. We leave the door slightly cracked so he can come in when he wants to get out of the heat. My mom and dad live across the street kinda caddy cornered from our driveway. Our mailboxes are on mom and dad’s side of the road. I tell you all of this info to continue with the story.

Our living room is in the front of the house away from Dake’s area.  Lyndsey and I were in the living room on this day during this time.

 Dake had had his breakfast and retrieve to do computer stuff or watch a movie.  This is his morning routine unless he is a little tired and he will go outside in the sun and maybe nap some….(Lyndsey calls Dake a cat  because he migrates to a warm sunny place to nap.)` The lady finished and came thru the living room and said, “Bye” then left.

Lyndsey and I were busy doing computer work in the living room and Dake was in his area watching a movie are working on something.  Usually every 30 minutes or so, Dake will come visit us in the living room when he takes a break or if he needs something.   This morning about 30 minutes had passed since the lady had exited out the front door.  I thought to myself, ‘Dake must have found something interesting this morning because he hasn’t been in to see us for a while.’  Another 15 minutes or so go by Dake and my mom comes from the back of the house  into the living room.  Dake is drenched in sweat. He said in a panic, “Didn’t you hear me calling?”

 Lyndsey and I are totally confused.

Why was my mom with him? Why was he covered in sweat if he was watching a movie? Why did I not hear him if he was in his computer area?

I replied,” No, Dake, why?” I am still very confused.

Dake said the lady let him out the garage before she left through the living room.   She then came into the living room and said, “Bye”, but did not say anything about Dake going outside.

I just assumed he was in his computer room.

Dake went into the garage and fell asleep. He got sweaty while sleeping and his had slipped off the joystick and arm rest.  His finger must have turned his chair electricity off which is near his joystick.  He woke up but he could not get his arm back up on his arm rest.  He screamed and yelled for Lyndsey and I but we never heard him.  He was in the garage about 30 minutes yelling for us.  He could not move or get anyone of us to hear him.  Luckily my mom went out to get her mail and thought she heard Dake’s voice.  She thought at first he was in the backyard calling for us.  Dake said he was at the point of saying ugly words.  (He apologized to his grandmother if she had heard anything.)  She found him in the garage and brought him inside.  I felt so bad. How horrible!  I did not even hear him.  Neither one of us did. If I had known he was outside I would have had my ears in high radar mode.  I usually check on him frequently when he goes out these days because of the heat. 

Ok….I deserve the “Bad Mother’s Award” for this one.  I do.  I do.  Just go ahead and say it.

He got well hydrated and was fine. Thank goodness.

 Thank God my mom loves to get her mail and has good hearing.

Dake was in an awesome mood the rest of the day.

 I told Lyndsey maybe 30 minutes of gut curdling screaming was a good stress reliever we should all try….

(I MUST make sure and tell my mom our plans if we choose this method of stress relief because she might have a little added stress going to the mailbox!)

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