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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, December 17, 2011

Fever Finally Broke

Dake's fever finally broke in the middle of the night last night. After sleeping in today he is beginning to feel much better. Thanks for all the nice thoughts and prayers from everyone.  Hoping he does not over do it today. 

Thursday, December 15, 2011

Update on Dake

We landed up at the doctor's office much against Dake's will. After a talk with his nurse, the doctor said he really wanted him to come in.
The doctor said without doing more extensive test he could not find anything on the surface wrong with him.  His lungs sound good so that was a relief. He gave him an antibiotic and he wants us to pay close attention to his fever. Right now the fever is still around even with ibuprofen.  He said if it does not break to bring him to the ER.
So now we wait.....
He did finally ate some chicken broth and is drinking some Gatorade.
Today certainly went differently than planned.


    We had such a "high" yesterday with our encouraging news from the cardiologist. But not even 24 hours have passed and things have kinda flip flopped. Dake had to have two treatments back to back before bedtime last night. After the last one he seemed comfortable and went on to bed.  David said he slept well until 4:00 (when David left for work).  From 4 o'clock until 6:30 a.m. I was called continually by Dake for readjusting and movement.. He seemed to feel OK just uncomfortable. 
      When the ladies came to help  with Dake's( around 7:15) bath and such I left to pick up some artwork.  Before arriving at my destination,  I got a phone call from one of the ladies telling me Dake was  running a fever and his pulse was high.  I made a U- turn and headed back. I called the doctor (pulmonologist) on the way home. He said if his fever got any higher to go on to the hospital.(worried about possibly turning into pneumonia) ( as I mentioned before the lungs and the heart are latter parts of this disease.)  I returned home and now waiting on the home health nurse to follow up with Dake after the ladies had called.
Dake is now resting and I hoping things will flip flop back soon.  There is nothing predictable about this disease. As we have seen in the last 24 hours things can change fast .Pray!

Wednesday, December 14, 2011

The Results of Today at the Cardiologist in Huntsville

Dake and I returned after a long day at the doctor.  Dake says,"they have waiting rooms to be able to go to another waiting room.".  That about sums it up.
        We went through the test required and waited for the doctor to enter the room.  Dr. Laney came in and said ," Dake, you are holding own and we could possibly say you are alittle better........" Thank you God.WOO HOO! YAY!
   As soon as the doctor left the room Dake said, 'Well, I think I am going to live forever!"
It has been a GOOD day!
 Next hurdle is in January at Johns Hopkins with more intensive and aggressive testing....(Dake is really dreading it.)  Please keep praying.

Returning to the Cardiologist in Huntsville

     Today Dake has his appointment with Dr. Laney (cardiologist) for his regular yearly check up. Last year is when we found had a strong decline in his heart function.  This conclusion kinda caught us off guard because we had no idea the decline wash going on.  Duchenne Muscular Dystrophy will progress and  the heart and the lungs are the last muscles to deteriorate before death. So, as Dake told me as we came out of the cardiologist's office after receiving the discouraging news.."It is, what it is!
    As we enter this day with a prayer and attitude of "It is, what it is!" I hope for a sign the experiment drug is working in our favor.

Monday, December 5, 2011

All This Talk About Prayer

There has been an abundance amount of talk about prayer lately. . Most of what has been said I agree with but I feel a vital important part has been overlooked or ignored.
   Just because a prayer is not answered the way one wishes doesn’t mean a prayer has not been answered. We need to always pray God’s Will- not our own. The best example of this is from Jesus in Matthew 26:39
..Going a little farther, He fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." (NIV)
Jesus fell to the ground and cried to God.  Jesus cried and plead to His Father, If there was any other way for God’s will to be done then take this pain away. God said, “No” to Jesus - but He still answered Jesus’ prayer.
God sometimes says, “no” and sometimes He says, “wait.” This in no way means God hasn’t answered  their prayers.  I believe those who have been told,  “no” by God or “to wait” by God and have managed to keep their faith actually have a different perspective of God  that perhaps is not known among those haven’t been there.
 Maybe that is what meant in
 James 1:2; Consider it pure joy, my brothers, whenever you face trials of many kinds (NIV) and in
James 1:12; Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. (NIV)
  I don’t even pretend to have prayer all figured out. But I do know those who have had God say, “no” or “wait” can be discouraged when prayer is discussed and this important vita l side of prayer is left out. Many times those who have had such an answer are weary and tired and need encouragement. Many times the ‘evils’ of doubt can set in as impatience surfaces. Or the “why God” begins to echo in their heads. Hope could be absent.  Prayer and encouragement is needed.
Matthew 17:20; He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
I don’t think anyone who has been discussing the subject of prayer meant discouragement upon anyone but please consider this side of prayer. 
I rejoice with those who have had their “yes” or the answer they had hoped for in His name.  I praise His name! I rejoice in their happiness.  Never would I want to take away this wonderful joy and hopefulness.
Isaiah 40:31… but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. NIV

Friday, December 2, 2011

Good bye Mr. Hobbs!

      Today my mother, Lyndsey and I attend the funeral for Wayne Hobbs. Wayne was a coach to David in high school football. My high school principal and later became my boss. He was Dake and Lyndsey's high school principal. He was very good to us when Gracey came along and help me make accommodations for her to help me continue working.  He was extremely good to Dake and saw he got what he needed while in school.  He went to bat for me when theschool  superintent and I were butting heads.
      Dake and Lyndsey's senior prom was at the Opryland Hotel.  The kids rode to the prom on charter buses. The buses were not handicap accessible.  So I was going to drive and take Dake and his date in our van. But this meant they were excluded from their friends. Mr. Hobbs arranged for Dake to have a limo and to take him and a few of his friends to follow behind the buses.  It was an awesome memory and  we appreciate all he did for him. 
    At graduation Dake had always work toward walking to get his diploma. But when Dake wasn't able to walk and rolled in to get his diploma Mr. Hobbs hugged him and the crowd gave them a standing ovation that still brings me to tears to think about 8 years later. It was one of those priceless moments.
Our hearts are with his family during this difficult time and pray God wraps his loving arms around them. RIP