Total Pageviews

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.

Wednesday, January 25, 2012

Day of Soreness and Rest

Dake is pretty sore from all the attempts of draining his blood. The ladies who help with getting him up and dressed had to be extra careful with him this morning. He was able to go back to bed this morning and that definitely made him happy. After the travels and events rest was truly needed. He seems rested after the extra sleep and seems to be in good spirits despite the soreness.  All is good.

Tuesday, January 24, 2012

Does Dake Really Have ANY Blood in his Body?

    Early this morning Dake woke up to a group of professionals all with needles.  The cardiologist triedto draw blood on the inside of his wrist but no luctk. So he decided to go ahead and try the femur vein/artery in upper leg.   No luck! The doctor dug but still no luck! Dake just said "Sweet Nibbets!"....Which honestly I could of thought of different words.
     The doctor had Dake drink water most of the day.  Dake said his eyeballs were floating......The cardiologist returned in the afternoon.  He tried first in his arm and hand.  No luck.....moved to his feet and luck....He decided to return to his femur artery/vein....Dake is not at all thrilled at this decision.  David had to help hold and lift Dake and I was on the other side.  David usually leaves the room on purpose because when anyone in his family has to have blood drawn or taken David usually lands up becoming the patient.  I made him look the other direction.....his face still turned blood red..
.Finally blood has been found and drawn.  SIGH!

Monday, January 23, 2012

First day of Testing @ Johns Hopkins

The flight here was very smooth and we landed to the sight of
SNOW....which is always exciting for us.
  Dake started out with a rough day as the head of IV and several nurses from all departments attempted to get blood from him. They finally made to his foot but still to no avail ...the blood remains in his body. But despite those failed efforts good news was around the corner. His grip strength had improved in October at the three month mark.and today revealed he had a strength increase even more in his grip at this six month mark......Baby STEPS BUT we will take IT! YES!!!! YAY!!!! 
Last time at the first MRI Dake had great difficulty with the task of breathing and holding his breath and the added grills put on his body. At the beginning in July what took 2 1/2 hours should have taken about an hour.  Today he completed his MRI in an hour and he did soooooo awesome with taking the test. We do not have the results yet but he was relieved to get the dreaded test behind him. I asked him what was diffeent this time and he said he just kept reciting the Lord's Prayer over and over again...He said he would forget where he was and start again.
Tomorrow the cardiologist will attempt go into Dake's main artery in his leg to get blood needed.  This is extreme and must be performed by a cardiologist. After consulting with his cardiologist he suggested this is probably the best way not to make him a human pin cushion. So in the morning this will be performed....
Today the actually medicine was adminstered.  and we will see.......

Sunday, January 22, 2012

Fly to Baltimore ....EARLY Monday

We will leave Athens early to travel to Baltimore, Johns Hopkins, on Monday morning. Please pray the travel will be comfortable for Dake and with lots of ease for David especially. Dake will be checked for his six months checkup. They will repeat the dreaded MRI (it took two hours last time) and several other test. This is the time in the trial that everyone will definitely be on the actually drug and not a placebo.  (Dake and I believe he is already on the actually drug but that is just our belief at this point).  Praying for awesome results on all his test and encouragement to continue forward with this drug.. Pray some of his daily living skills return with the hope of this drug..

Saturday, January 21, 2012

2 Awesome Days......(knock on wood)

Dake has had two wonderful days the last two days/ In the past 48 hours Dake has not had to have a breathing treatment which is the first time since right before Christmas.  Celebration! Yay! Keep praying.

Tuesday, January 17, 2012

Coming up on the 23rd of January ....SIX MONTHS.

Dake will be returning to Baltimore MD at Johns Hopkins for his six months check up. This is a check up on being on the sildenafil or placebo.  At this time all test will be repeated and then he will definitely be placed on the medication. No placebos will be administrated after six months..ALL patients for sure get the medicine. Dake and I both have a gut feeling he has been on the medicine all along but we are guessing at this point.
PLEASE pray for this trip and the results will be POSITIVE for Duchenne Muscular Dystrophy patients.  Please pray for David and I as we wait with Dake and deal with the details.  And please pray for Lyndsey and Gracey while they carry on with daily life and wait for the information to filter down to them. Thanks so much for your support.

Dake and his friends get a way for a weekend.

Lyndsey and Dake and their friends, (Perry, Phillip, Evan, Miranda and Clint) headed to the beach for the Gulf Coast Getaway in Panama City Beach. It is a yearly thing on MLKing weekend. Dake looks forward to this trip all year long. It is a Christian retreat for young adults.
This year he was all ready to go but he had to put a hold on his plans. On Tuesday before they were to leave on Friday Dake had to go to his pulmonologist because he was having a cough making it hard for him to breath. He was having to do more breathing treatments to be comfortable and his cough was not getting better. He asked to go....(This never happens and usually begs me to hold off when I suggest going).Dake up to this point has not had any pulmonology issues.  The doctor was definitely concerned and gave him a steroid shot immediately and ordered a chest xray. He also said if the xray was not clear he could not go. He had reservation about him going without a nurse or doctor traveling anyway. I told him about the people going and he agreed if the xray was OK he could go as long as he had responsible adults who know how to handle his situations accompanying him.
    The next day we found out his xray was clear and he could go. He was so excited. He packed two days early. Plans were still own and now mom need to learn to breath. David and I were headed in a different direction with Gracey to a a gymnastic meet.  I must admit I drove everyone crazy who had a phone checking on him. Everyone was nice and said it was fine but I know I was a nuance.  This trip was hard on momma being away.
They had a wonderul time.  He had to had treatments every night but everyone handle the situations beautifully.  Wonderful friends are awesome.

Thursday, January 5, 2012

Back To School and a Whirlwind of Activities for January

      Gracey goes back to school tomorrow. I am never ready for my kids to go back to school. I love hanging out with them and enjoy time with them. 
      This month will be busy for us. Dake and Lyndsey have Gulf Coast Getaway in Panama City. I usually go and take Gracey and drive our group. This year Gracey has a gymnastic meet in the opposite direction.(Gracey is not happy she has to miss too.) I love going to hear Randy Harris. But the amazing singing is worth going to hear alone. Not to mention the experience of the ocean and beach during the off season. It feels like your own personal beach.  Dake, Lyndsey, Phillip, Evan, and Miranda are for sure going and others are still pending.  I know they will have an amazing time.
         I am a little worry about Dake and his breathing.  This winter has definitely been different.  He has had to have more breathing treatments in November and December of 2011 then all his treatments in the years past combined. Also our pulmonologist we have been going to for the past few years is moving to Arizona. I am happy for him but sad for us because I really wanted to have a "relationship" built with the pulmonologist before needing him or her on a regular basis.
   So far we have had only one scary situation with Dake and his breathing. Dake had a treatment right before bed. He then woke David up about 2 AM unable to get air in.  He was scared and his eyes fully expressed it.  We repeated his treatment. I knew if this did not work we would have to call an ambulance.  Luckily it did work.....Thank God! 
Before heading to GCG the group above will all be instructed on how to help with the breathing machine. 
 This is the first time I have felt the breathing machine should travel with him.

Wednesday, January 4, 2012

On My Mind.....

 January 4, 2012
          The past few days my mind seems to continually be thinking and praying about a couple of children I do not even know. The children are Noah I have seen on Facebook the “Pray For Noah” entries and Eli William’s health was announced at church.
 Not sure why my mind seems to drift back to these kids and their families other than I know the hurt the mommies are feeling.  Honestly, I do not even know the details of the boy’s problems .  I do know the desperation a parent feels when the doctors offer little or no hope.  When medicine does not have the answers (and even if it does) God and prayer is ALWAYS there.  And  I do know  sometimes when your heart hurts and you are overwhelmed you need others earnestly praying for you. To take over while you catch your breath.
Heavy on my mind is also Deb Ezell and her mother and family. (Her mom is on the conquering cancer journey. The cancer is very aggressive.)
Also just  found out  Noah Bowman had a lump removed from his neck yesterday and they are waiting on the biopsy results. This kind of waiting is  so heart wrenching and hard.
…... So today, I am a prayer warrior for my son and these boys and their families.  Please pray for Deb and family and Noah Bowman and his family too  . Please join me” flood the lines” to God for these families.