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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


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


      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.

Tuesday, August 16, 2011

Local Doctor's Review

    Dake went to his local doctor to have a one month check up and evaluation. There is little to tell at this point.  He checked out fairly well with a concern with his blood pressure running low. We are to watch it and come back if it does not go up any.  
    Tomorrow we go to the pulmologist and have a check up there.
    This is a rather boring update but I would rather have it like this then a dramatic one. I have had my share of those and will take the mundane boring ones anytime. Check back later for this docs detail.  Hope they are boring too.

Sunday, August 14, 2011

One Month Passed!

  Tomorrow Dake goes to the doctor locally for his first month's check up since he started the research program.  We were able to work with Johns Hopkins to have a few of his check ups done locally so we did not have to fly to Baltimore every month. This will help us so much physically and financially.  I have to remember to take all the paper work and info because Johns Hopkins covers all the charges even here at the local doctor. I tried to call ahead and let them know the situation with billing but that is like speaking a foreign language when I try to explain everything.  So I am going in and try again face to face.....I know I can draw picture if needed.

 The symptoms I want to check out most is his headaches and swelling of hands. Both symptoms are better but need to have them documented. And against Dake's wishes, I will feel better just having him checked out for those things. Dake would rather just skip that part and not mention it.  But sorry Dake...Mom Rules on this one.
He has a pulmonologist appointment on Wednesday. This is going to be a busy week. School, Doctor, Gymnastic, etc.....Whirlwind....Crazy!

Saturday, August 13, 2011

Graduation for Phillip

              Today is a very special day. Dake's best friend is graduating as a mechanical engineer from UAH.  This graduation is extra, extra special. His like family but because he has had extra challenges along the way.  His four years has taken him eight with his challenges and obstacles of life. We are so proud of him and how hard he has pushed and worked this last eight years.
Today we say
to our
 dear friend Phillip!
     He has shown us and others not to let struggles and obstacles hinder you from striving and achieving your dreams and goals. Go Phillip! 
      See you at graduation!

Thursday, August 11, 2011

Fifth Grade

      Tonight was Gracey's fifth grade orientation. I cannot believe my baby is going to fifth grade. The fifth grade is a big year and she will begin by starting to go to a new school. She will have a locker and change classes for the first time. Lots of new and exciting stuff.
    My fifth grade year was one of my worst in my school career. My teacher lost her mother and husband both in that year . Children and grieving do not always mix. 
    Fifth grade was a transitional time for Dake.  It was when he got his first scooter. He always told us after his diagnosis that he would NEVER go to a wheelchair.  As the time started to approach that some intervention of help with walking was needed I knew I needed  to give him permission or reassurance it was OK to go to a wheelchair.  He had echoed the statement he would never have to use a wheelchair so much because he was constantly staying positive. But honestly I think he was trying to protect us by denying  inevitable.
      In the fifth grade the time had dreadfully come. He needed some help walking long distances and  maneuvering in the hallways. He could easily get knocked down if he was bumped by someone in the hall or classroom.  He was not emotionally ready for a full wheelchair and honestly I was not either. (I hated
 the first scooter... but relieved to have it at the same time.) We talked about how cool his new cart was and how fun it would be. He adjusted well and was relieved to have the stress of walking the halls lifted.  Mrs. Tucker was an amazing teacher and she was very adjusting too. Luckily his best friend Phillip was in the same room that year. Phillip was fascinated by the mechanics of it all.  They were planning to "soup" up his ride on a 10 year old level.
 All in all Dake had a very successful happy fifth grade year.

Wednesday, August 10, 2011

Is He Or Is He NOT? That is the Question...

 Some have asked and I have continually asked myself...."Do you think Dake is actually on the drug or just the placebo?"  Aug. 13th will mark a month of starting the medication.  I wish the answer was so astronomically no one had to ask because he would do something like walk or do jumping jacks to answer that question. But unfortunately it does not work that way. 
....But as I slip back to reality....honestly some days I think definitely he is on the drug and others I am certain he is not. He kinda feels the same way. Even Gracey was convinced he had lifted his drink higher than usual the other day....but Dake did not think so.... So I quess we are all on constant watch.  That wonderful word of patience is in play....again...Isaiah 40:31
but they who wait for the LORD
 shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
 they shall walk and not faint.

I love visualizing riding on the wings of eagles in flight.... and Dake being that free.

Monday, August 8, 2011


Dake and his grandmother, GaLou have decided to take a conversational Spanish class through the continuing education at the Athens State location downtown.   Today was the first day. Dake was a little nervous but excited.  He was definitely curious. Mom called early this morning and said the instructor called and they are postponing the class until September. I told him today when he was half asleep but I think he was a little disappointed by the delay. GaLou was afraid the class was going to be canceled when they called today so we are glad it is still on.

     Dake doesn't hear well phonically. He is dyslexic.  Learning if not taught in his style can be quite difficult.   He has never taken Spanish but has traveled twice to Mexico for mission trips. He loved interacting with the people especially the children. (and they loved him.)  And, of course having a little sister from Guatemala the desire is enhanced to learn the language.
Going with his GaLou there is a guarantee they will have FUN!

Sunday, August 7, 2011

Corn, Corn, Corn......

       Today we ran it close to starting time to get to church this morning. We have all known of people who think they "own" their seat or place on a certain pew at church. It is not like that actually with us but it may appear like that to some. We  have to find an end pew or seat to house our family and Dake on then end. We need an end seat next to Dake not only because it is nice to sit together but because he needs assistance with the communion and other things sometimes during church. This morning we were running it close to the wire and I begin to get a little panicky worrying we will not get a place where we can sit next to Dake. Luckily, I think we got the last spot and got settled in before service began. It so nice to have all my kids and Phillip with our family today. I gave me the warm know one of those small things that just make you feel good.

     David's mom called and said the storm had blown one crop of corn down and we need to come as soon as we can to help with getting all this corn up. We left after lunch and headed to Tennessee to shuck and fix the corn. They had done enough already for David's mom and his sister and family. They had given away a bunch and were at the desperate point by the time we arrived. David and Phillip helped shucked the corn and Lyndsey, Gracey and I cut the corn off the cob and bagged it for freezing it. Dake started outside with the shuckers and moved inside and ate some of Mimi's hot fudge cake as he watched us cut corn.....his Aunt Bippy served him up right. (Something is not fair about him eating Mimi's hot fudge cake as we were working.......but no worries we did get ours when we finished.)
    Lyndsey grabbed her knife bag and we headed to Mimi's kitchen.  When we all got in our place Lyndsey shared her knives with us for cutting the corn off the cob. She has a small fortune in her knives.  I cut the corn off the first cob and I was in love. It was like butter sliding down the cob. Pretty awesome. As I was so proud of my progress I looked over and saw Lyndsey did about four cobs to my one. As my corn ego deflated I stopped to watch and WOW.   Watching her was like going to the Japanese Restaurant and watching the chef chop up your dinner for you but in corn form ....if you can visualize what I mean. She was very entertaining.  Dake actually stopped eating a moment to watch too.
    We finally finished up with 25 beautiful quart bags of golden sweet corn. Mimi was pooped and relieved....... well until the next crop comes in.....

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.