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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.



Tuesday, August 30, 2011

Compliments ONLY!

    Great news, Pam gets to return home from hospital and for mending along with girls. Hoping they will be as good as new soon....Thank you God.  The Schrimshers and Besheres have had way too many bumps this year with the tornado and this wreck. We are continuing to pray for their full recovery. 
 When I was five I had a wreck with my grandfather who lived in Memphis. (We lived in Columbia, Tn.) I remember he was so scared when he saw me because I was covered in blood. He got to ride in the ambulance with me and he told the ambulance driver not to put on the siren because he thought it would scare me.  It took a long time to feel comfortable to ride in a car again.  My head got hit hard and I had a bloody nose. I had a concussion and they were told to not let me sleep and bring me back to the hospital if I had any vomiting with blood. I  remember having a bad headache and did not want to eat but my grandmother gave me HI-C.  It tasted so good. Later I started vomiting and my grandparents thought I had thrown up blood but it was just the HI-C.  
  David's blood pressure is still elevated but better than it was. Within minutes of arriving home he was pulled over and given two  traffic tickets.  One for failing to use his turn signal and the other for light not working properly....This is not the best thing for someone with blood pressure issues. We could truly say lousy timing...
The doctor's office called and had to postpone David's appt. for Wednesday to Thursday. This is one time I do not want to be patient.
Luckily Phillip is visiting with us this week and he is taking the sleep issue for David right now. Phillip is amazing how he seems to show up in our life when we really need some help. We are not only thankful for his friendship with Dake but with the whole family....He is like family. Thanks Phillip.
Tomorrow Mom (me) has decided we can only say positive and loving things to each other. I noticed on Dake's facebook he had already paid a nice compliment to his red headed sister...  I was so proud of him getting an early start...later I discovered she had written it instead of him. 

Monday, August 29, 2011

Praying for Pam, Sarah Beth, and Kimberly Besheres

We have heard Pam and Sarah Beth and Kimberly have been in a car accident. They have been taken to Huntsville Hospital...Please pray for this precious family.

Please remember David too...he is still struggling with high blood pressure....


Recent update from Bill Perkins:    Update: Kimberly has been released. Sarah Beth bruised collar bone. Pam likely has a small fracture of sternum (seat-belt) still waiting on x-rays of right leg. Doc said "she is okay". Neck collar is off, she can get up if she can/wants to. Praise God!

Sunday, August 28, 2011

Pray

Just a quick note to ask for prayers for David and his elevated blood pressure. His bp spiked on Saturday and he having throbbing headaches and bp is still up. Please pray. Will write more later...sorry for the delay in postings.

Sunday, August 21, 2011

Perception from Others

       Have you ever wondered what others think of you?  I think most of us are a little curious at times.
      It is interesting how some people will see someone in a wheelchair and comment as though they are not there or cannot hear them.
    One of my favorites perceptions of Dake was when he had his service dog, "LURCH" (huge great dane and lab mix ) with him and we went into Walmart and the person said to the person beside them  "He must be blind".....OK..... think about it! Would he be driving a powerful machine if he were blind?....He did not have one hand on the ground and one on the joystick.  You have to laugh because surely by the time that person got to the car they realized what they said.  (Personally, I would have loved to see that! ha ha) Surprisingly we heard that comment a couple of times.  We actually do laugh.  It is interesting to people watch.


   The other day Dake, Lyndsey and I went to a restaurant we frequent often.  We ordered our drinks as usual and they brought them.  The nice waiter brought Lyndsey and myself the large glasses as usual but he brought Dake a "kiddie cup" as Dake calls it.  You know the cups with a lid and straw.  I immediately thought how thoughtful the waiter was being sensitive to his needs. Dake on the other hand took it as an insult. Lyndsey laughed and teased him trying to make light of it. Then we all started laughing. It really upset him though and I understand what he was saying.
   I understood both views...The waiter thought he was being kind and he was but I undersood Dake being insulted by it. He felt like he was being perceived like a fragile person who could not help himself.
  I knew Dake was feeling better about it today when he was sharing the story with a friend and was laughing about it.
  Laughter is truly the best medicine.


One of my favorite t-shirts Dake had was....."Stare long enough and I might to a trick!"

Thursday, August 18, 2011

Whose Watching Who? or is it Whom???

     Today Dake rolled into the backyard and enjoyed the warm sun.  (aka napped in the sun)  Lyndsey was napping on the couch in the room next to the back door. I decided to spend some time painting and enjoy the time alone in the living room where my easel is temporarily set up. (living room is in the front of the house). Before putting the brush to my canvas I decided to get the mail. The heat hit me in the face as I ran across my yard to my mailbox. My dad was outside working in his yard. (Mom had taken a friend to lunch).I went ahead and got my mail and went over to talked to him about 3 yards away.  I was concerned about the heat and him doing yard work out in it. We talked brief ( a little politics)  and I headed back knowing my brushes were waiting on me. I hurried in, cranked up the music and drifted off to my artistic zone of bliss.  I was keeping an eye on my dad because the heat really concerned me.
      My dad is "Type A" personality. He never leaves a job unfinished.  As a kid, we would work on a project  and  no matter how tired or late it was would always finish.   Not only would we finish but we would clean all the tools we had used before putting them in their assigned places.  (This "type A' gene was not passed on to me unfortunately.)
      I was painting then I stopped and  looked out my window near my easel but did not see my dad.  I walked in another room to get a different view.  I was worried he had passed out from the heat. I was distracted by the interruption of  Dake rolling in .... He was in a panic asking me why I did not hear him. Clueless I said, "What are you talking about? (assuming Lyndsey must have let him in.)  Dake said, "I fell asleep and my arm slid off my armrest and I couldn't get it back up. (He could not get his arm up to the joystick.) I was screaming and yelling for you.  I was stuck and could not move!."
       I apologized calming him down  and glanced in the den where Lyndsey was.....she was sound asleep.  I asked him how he got inside?  He said, "Pops heard me from across the street and he came to help me!"  Then my focus jumped to my dad....Oh yeah! Dad!"
 Oh .... Oh.... Oh...THAT was  where he was!"
I ran from the back to the front to thank him.....(he was in the driveway)
Dake calmed down and Lyndsey said she never heard him.....she was about 3 yards away from him...zzzzzzzzzz......
All is well and everyone is fine......
My easel is still calling me......
 ........ perhaps another "quiet" time.....

A Good Day

    Today, we found out that the nuclear plant David works for is going to be reopened.  He drives to Scottsboro everyday to Bellefonte Nuclear Plant.  This is the plant that will be reopened and built. This is good news for our family and many others. 

Also, Lyndsey was offered a part time job  teaching Hospitality courses at Drake State Technical College in Huntsville. It has the potential of growing into more and she could have the opportunity to teach the overflow of culinary classes in the future. Drake State's culinary program is really growing so the position is a real potential. 
So needless to say we are excited about all the good news today.

Wednesday, August 17, 2011

Pulmologist

      Today Dake had his pulmonary visit.  The doctor is very happy and impressed with Dake's pulmonary function from his evaluation today.  He is waiting on the evaluations done at Johns Hopkins so he can compare the records with his but he is very please with what he saw with Dake's lungs today.  And we will celebrate this moment. YAY!

     Gracey's first few days of school has gone well so far. She, for the most part leaves me in the morning smiling and gets back in the car smiling. So far the worst part of her day is the taste of her lunch...This morning I had a flash forward with her attitude. She could not get her hair to her liking and it was not a happy moment.  I finally forced her in the car because of time and she at least came to a satisfaction with her locks before arriving to school. She did give me a sweet smile before hopping out the car. 
       My experience tells me I will have plenty more mornings like this one echoing in my future. We are coming into that dreaded "stage" of adolescence. So we will just better hang on for the ride. This too will pass.