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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, September 29, 2011

Why so sleepy?

    Wednesday,at 6:50 a..m.,  Dake had great difficulty waking up. His blood pressure was extremely low. (he usually has unusual low blood pressure in the mornings....Wednesday it was even lower for his normal).
    I had Lyndsey take Gracey to school just in case while he was getting a bath he decided to pass out.(which has happened before)
     I love taking Gracey to school for her to have some normalcy (whatever that is) for her but for me too. Dake had his bath but he acted almost like he was drugged. I double checked his meds and all of it was fine.  In fact I had been trying to cut back on one of his "sleep" pills to see if getting up in the mornings would be alittle easier.  He really did not want to get up but I insisted hoping his blood pressure would rise some. He did get up with the home health ladies and went on to get his bath. He did not shave which is highly usual for him....he is kinda OCD with his shaving.  He wanted to go back to bed which I knew he needed to keep going but I really felt for him because it was obvious he was sleepy.
 Of course it was one of those days we had a list and a half of things to be checked off  for our daily routine...and this day was a day of leaving the house to get it accomplished.  (This is an area I have a hard time with....I like to get on the 'ball" and get things done.  Living with Dake has taught me things don't always goes as planned.... And more than likely don't have expectations because it will not go like you expect more times than not.)  ( this where I tell myself to breath....just breath...)  Just making a quick run to the store..... or whatever fits in the blank does not exsist at our house.
    I told him he could rest until 9:30 to 9:45 then I really had to get some of things done that were on a time line. He did ask for five more minutes which he always does....(but can't complain I am a "hit the snooze button" three times kinda gal).  Lyndsey and I got him up and got him refreshed.  As we drove around town doing the routine errrands he wanted to stay in the van so he could sleep. Each time we stopped and returned to the van I would wake him up and he would immediately go back to sleep.I even sincerely told him I would sacrifice my feelings and slap him if it would help. I did manage to get a smile before he knodded off again.
   At 12  o'clock he had his Spanish class with my mom. I was getting concerned he was not going to stay awake to go....he was having great difficulty just keeping his eyes open.  I kept calling his name as I was driving....I know it drove him crazy but I couldn't get him to wake up good.  Class time came and I told my mom about his sleepiness and told her to call if he could not make it.  He made it thru his class without calling us...He said he fought it at the beginning but finally seemed to wake up toward the middle.
Today, the sleepiness was not there.....wel,l at least not excessively....

Monday, September 26, 2011

Dake's Facebook post today

We often pray for Christ to cure us yet forget God uses own Illness to draw people to him.

As He past by, He saw a man blind from birth. And His disciples asked Him, Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.
-John 9 1-3

 Justin Webster Well said!
  Joseph Griffin I think about conversation between people standing in line waiting for admission to Heaven's Gate. "What did you do with your life?" "I was a Super Bowl champion". What did you do with your life?" "I was used by God to tell others about Christ" Keep drawing 'em Dake. Andy Finchum Missed you in class yesterday, my man!
Wendy Shelton Very well said Dake.

Monday, September 19, 2011


        Lyndsey is back home and she has made it her mission to ”whoop” us in shape. She is showing Dake how he can be more independent in little ways. She told him when he is at a restaurant to have the kitchen cut up his food so we do not have too. She told him it makes him more independent and he does not have to rely on anyone to stop eating to help him. 
Yesterday we went to a local Mexican restaurant and Dake requested a smaller glass so it will be easier for him to drink. The drinks came out and he has an ex large glass like the rest of us.  I suggested he ask for a “to go” cup.  So he gets his “to go” cup and feels good about it. Lyndsey reminds him to ask the waitress to have his chimichanga cut into bite size pieces. So he did. The waitress brings Dake’s his food and it’s a child’s hotdog.  The look on Dake’s face still makes me laugh today. We are all trying to remain calm and nonchalant  but in reality we were about to blow milk out our noses. Lyndsey comes to his rescue and speaks a little Spanish to her and she finally comprehends.  She then returns the correct order and cut up into bite size pieces.
                               David now calls Dake, “Hotdog”.

Wednesday, September 14, 2011


      When you children go off to college or other adventure and return home things are always different,  My oldest daughter returns home after being gone for three years and notices changes in the dynamic of our family. Changes to us that are subtle and gradual and we don't notice anymore.
       For years David and I have been an advocate for Dake.  (Not only with the Muscular Dystrophy but with his very challenge dyslexia, as well.)  Lyndsey was always there, even as small child supporting and cheering for him and the family. She is pretty remarkable, even if she is mine.
       The other day I got on the computer and noticed all these tabs open to different agencies to help with a variety of services.  She told me that her Dad and I needed help and we should utilize any and all services. I said I thought we had and many times the answer is NO.  She said that is not good enough. (She has red headed spirit!)
 I never thought we needed an advocate.

Tuesday, September 13, 2011

Class in Session

Dake and his grandmother, Galou, (my mom), started conversational Spanish on Tuesday. Today Galou came over so they could do their homework.....Dake is nervous he is not already speaking the language when he enters the class. Both of them seem to be having a good time....

Dake returns to his local Dr. tomorrow for his two month check up. Plans are set up for him to fly back to Baltimore for his three month check up.

Lyndsey bought 20 + plus chickens to prepare for the Wednesday night meal at church. I am sweating at the thought of her having to fix for 200 people. But she is totally fine. I would be sweating if I were fixing for 2 people, (those two people would be sweating too if they knew I was feeding them) .   So I guess you figured out she did not get her culinary influence from me.

Thursday, September 8, 2011

Planning Ahead

Just booked the next flight to Baltimore which will mark the three month mark of when Dake started the study. This next trip will be in October.  We will only have to be at Johns Hopkins for about an hour so we are going to fly up and return the same day. I hope this does not completely exhaust him. Phillip is think about going with us on this trip but it depends if he has a new job that will interfere or not. His help and company will be truly appreciated.
Nothing significant has been seen or felt by Dake so far.
We will continue to pray for what is best for him and God's guidance.
 Of course. I would love that miracle.

Sunday, September 4, 2011


   This morning while getting dressed and ready for church Phillip was helping us by finishing with Dake. So to help him  I ran upstairs to iron Phillip's shirt for him. I turned the iron on so it would heat up and did a few finishing touches.  We were hurry because we were running a little behind. (as usual). I quickly ironed Phillip's shirt grabbed it and ran downstairs as announcing we need to be in the car with the motor running. Phillip puts on his shirt and out the door we go. 
We get to church with minutes and down to seconds to spare.  We got Dake out of the back of the van and get him straightened and comfortable. (always have to allow time for straightening and time to get him is kinda a ritual now.) We finally make it in the building to find an end seat....up front, of course but we make it before the first note of the first song is sung! Yay! (miracle accomplished! WooHoo!)  We all get positioned in our seats and sigh as if we catch our breath.   
     As the first song began, I glanced to see if everyone was in their place and set. Then I noticed Phillip's shirt.  I got tickled to myself but at this point what could I do.  I had ironed his shirt like I iron Dake's shirt.  I am about to admit the short cuts I take in my everyday life here.  I only iron the front parts of Dake's shirts because of his chair no one ever sees anymore of the shirt .  So out of habit I had ironed Phillip's shirt the same way.  
Poor guy and he was helping me and I THOUGHT I was helping him...
................................................................He did forgave me.....

Thursday, September 1, 2011

If you could clone me......

  David returned to the doctor today and the doctor changed a medication. The doctor also received his blood work back and noticed he has a deficiency in a vitamin and he is now taking a supplement.  So we wait for the new medication and the supplement to take affect and hopefully he will be a new man. (Just the same great guy is just fine with me)

     Dake asked me the other day along with Phillip, Lyndsey,and Gracey, "If you could clone me and one of me was in the chair and one of me was walking which son would you want to be your son."  I replied, "You would not be who you are if you were not in the chair. So if you looked identical on the outside and one was walking and one was in a would be impossible for you to be identical on the inside."  He agreed...I said."You are not your chair but being in a chair has molded you to who you are today.  I like him,  he is a pretty awesome guy but I would love for you to be walking....more than anything. So if you could be the christian man you are out of the chair like you are in the chair I would pick for you to walk..........."  I asked him the same question too.  He said he did not know if he would be as faithful out of the chair........
We continued a great discussion with what would be different if he did not have the chair as part of his life but was a healthy walking young man.  We talked about where he thought he would be in life and what he would be doing as a profession.  It was a good conversation and everyone had an opinion of how his life would have been if.........  It was good but bitter sweet.

God has blessed me with amazing children and I am thankful for them all.