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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.

Friday, July 29, 2011


      Gracey and I made it to Houston safe and sound.  We  are thick in the moving stress but so enjoying our time together.  Lyndsey took her final on Thursday morning.   We were up so late the night before with her finishing work paperwork, me packing and Gracey running all through the apartment with "Basil", Lyndsey's cat.
     Lyndsey has to take a written final and a practical final. She took the written final on Thursday.  She past with amazing flying colors. I am so proud of her. She takes her practical exam in Austin, Texas in August on the 20th.
     I have called regularly to check on Dake.  He is having fun with Eli Griffin coming and visiting him.  He has really enjoyed meeting and getting to know him better.  Thanks Eli for taking the time to spend some time out of your schedule to visit. Will Grice and Eli took him out to eat yesterday.  Will is nice to Dake out to eat every now and then.  It helps a mom who  is out of reach for awhile. Mimi and GaLou have been busy with vegetables Mimi has brought in from her abundant garden. They were doing "Rattlesnake" green be  ans last I heard.
    David is coaching and helping me get through some of the bumpy stuff of moving. So unfortunately he probably has had the worst job of all. Thanks for the help and love you for dealing with the "stressful" me.
    Today is Lyndsey's last day of work. Wow. I hope it is a good farewell for her. I have meet some of her wonderful friends and they are all so sweet to her as she finishes her final days here in Houston. (This does a mom good too.)
  Lyndsey's apartment is adorable. She had it decorated with discount and yard sale specials but you would never know with its dazzling pizazz.  It is too cute.  I have done most of the packing because she is finishing her apprenticeship items and working. I have been amazed how organized and how she has a minimalist approach to life. I know she is my daughter but she is pretty awesome. She definitely has a little of her dad in her and a little of her mom mixed with her own principals added.
     Lyndsey has a pool outside her apartment door.  This pool has been calling Gracey's name since we arrived. I promise her I would take her when we go do the laundry because they are side by side. She is trying to patiently wait until I finish here. So I will finish and take her to the pool and experience the joys (again) of washing clothes at the laundry mat. Lyndsey told me that was going to be her first purchase when she gets a job.

Tuesday, July 26, 2011

Early To Bed....Early To Rise...

    One out of two ain't bad.  
    Tomorrow morning Gracey and I will leave Athens and head to Houston.  We will leave our house about 4:30 a.m. and drive to Nashville with a lay over in Memphis and then on to Houston.  Lyndsey has nice agenda planned  for a girl's long weekend out. ( I hope we have time to pack her.) We are excited to meet some of the people she works with and to see her apartment.  It's bad that we are just now able to see her apartment the same weekend she is moving out of it.
      We have not traveled by van in the last year because Dake was having trouble traveling that far. So to simplify things we would fly Lyndsey here for special times together.  This is why we have not seen her place for the last year.
     I think I have all my ducks in a row for Dake. Mimi and GaLou (grandmothers) have graciously agreed to stay and help with Dake. Neither one nor should they lift Dake so Eli has agreed to be on call for them in case he needs to be lifted after the home health ladies leave in the morning.  David works in Scottboro now and is an hour and a half away. If Dake needed to be lifted for some reason he could not get to him immediately.  Thanks so much Eli this makes leaving so much easier.
    I have his meds separated and labeled for Dake.  He has three doses a day. I got the emergency numbers posted on the cabinet door. All the home health ladies are on ready. Thursday we will be minus one girl but it is taken care of and should not  be a burden on the grandmothers. All his clothes have been washed and dried.  I know am forgetting something but hopefully everything will work out just fine.
     Dake had something happen today that has never had happen before.  His hands were swollen and puffy. Not sure what caused this and he instructed me not to worry.  His grandmothers instructed him he had to behave and not get sick while I was away. It could be the heat, maybe or the new medicine for the study....not sure but will definitely be watching it. He has had a headache the last two days as well. 
         It is nice of him to make me worry right before I leave. haha.
He told me not worry but he did ask me in private later if I thought it was OK. I jokingly said, "You are not to worry." in the same way he told me.
Lyndsey will come home to continue her new job search. We have several in our family who have finished college and started the hunt. Hoping they all find there dream jobs soon.
Must go to bed now!

Sunday, July 24, 2011

Faux pas

            Today, I committed an horrible faux pas. It was truly appalling.  But it happened. It was totally an accident.  It was luckily only noticed by one person...... I think. Thankfully that person was my husband. David and I teach the fifth and sixth grade at church. The curriculum this quarter is science based.  It basically is showing Christianity vs evolution. Today's lesson it was talking about  "organisms" and I totally whole heartedly pronounced it wrong .( just remove the n and i)  David about choked and as soon as I said it out loud I hyperventalated but quickly corrected myself...I believe it was over their heads but YIKES.....sometimes I just need to stay home.  David hasn't let me live it down...

....So sorry if your child is in our class. But no one reacted and my own child did not comment so I am sure it flew over their heads.
Gotta laugh so I don't cry.

Saturday, July 23, 2011


        Saturdays are the best. It is the only day each week we do not have anyone come in our house at 7 am  or before that is not kin to me or personally invited.
      I appreciate the help with Dake during the week and never want to indicate I do not .But Saturdays make me feel like we are just an normal ordinary familly. I can sleep a little later without thinking it is time for someone to enter the house. I guess it its the privacy issue too. Dake's helpers enter as the arrive to our house. I had set it up this way because sometimes in the school mornings I am busy helping Gracey get ready and it interferes with me getting her ready on time if I stop and answer the door each time they arrive.
      Anyway David took Gracey out for their regular Saturday morning "date" to Buger King for breakfast.  David takes this time to have some one on one with Gracey each Saturday and lets me sleep a little late...(.He is so sweet.) (He has done this since she was five years old.)
       This morning soon after they left Dake called to be turned from his bedroom downstairs.  As I came down my stairs to go to Dake's room someone knocked on the front door.  Luckily I had put my clothes on because my nephew and niece had spent the night and I did not want any embarrassment with half clothed bodies....I went to the door and I could barely move (David and I built a new fence yesterday) because I was sore and stiff  (and old). I have the" sleep in" contacts in my eyes and because Dake called I did not stop to put drops in my eyes so I will blinking constantly trying to lubricate my eyes enough to see. So I answer the door and it is two sweet people trying to
"sell  Jesus" to me.  I am sure one look at me with my unbrushed hair, stiff stammering moves and my blinking eyes they probably thought she really looked like a soul who was lost. I explained where I attend church and sent them on they way. (Sure would have loved to hear what they said after they left me....hahha!)     
           Dake called again and after finishing getting him adjusted there was another knock on the door.....oh well, not a relaxing Saturday this time.......

Tuesday, July 19, 2011

"Life is too short to be sad."

Been in a big funk the past few days and now it is time to SNAP out of it......Dake's quote from a long time ago  was "Life is too short to be sad." So forward we will go.

Lyndsey finishes up her three year apprenticeship at the Houston Country Club under the skills of master chefs, executive chefs and sous chefs. We are so excited. She will come home to Athens and catch her breath and begin her journey of job hunting.  Her first ambition is to teach and teach at a  competition level with ACF (American Culinary Federation) qualifications   She hopes to be closer to family and we definitely do too..  So it begins....I am excited for her new chapter and especially getting to see her a little more.
Gracey has been counting the days since she left.  She left when Gracey was  in the second grade and she knew she wouldn return when she started fifth grade...this fall she starts the fifth grade and Lyndsey comes home. Gracey is beyond excited.

Dake said "Oh No! Now I will have two sister telling me what to do!"

Gracey and I will fly out next week and get her packed and bring her home....YAY!

Monday, July 18, 2011

"Sometimes God allows what He hates to accomplish what He loves."
— Max Lucado

Friday, July 15, 2011

Isaiah 65:24

Before they call, I will answer; and while they are still speaking, I will hear" (Isaiah 65:24).

"Before you even utter a word," God promises, "I'm involved in answering. In fact, while you're speaking, I'm involved in bringing to pass the very thing I have planned from the get go."


You know I am going to just tell you straight up, I HATE this disease.  It has robbed my child of his strength, quality of life and dignity.  I have watched with diligence for almost 21 years of his life.  I have watched as the life has been drained out of his spirit.  I've watched the frustration of  this disease steal his stature and ability to become the man he desires to be.  Knowing that there is not a  dang thing I can do about it makes the hatred of this disease grow stronger. The strong feelings of hate for this disease can come out of anywhere and at anytime.

      Yesterday we had a long wait at the airport in Baltimore.  We were in the family restroom all together and it hit.....We had a meltdown.....Yelling, anger, fear and tears filled this little room in a public area.  (Hopefully no one was waiting.) My heart still hurts today as I remember Dake plea desires to be independent and to be a man.  A man with an independent life.  It breaks my heart I cannot give him that. As a parent, we are suppose to teach our children independence and then one day give them it. It is one of the best gifts of all and  to let them fly.

     On Wednesday night, Dake stayed alone in the hospital.  "They" highly recommended the parents not David pushed me in the cab, both our hearts were reluctant.  This is the first time EVER Dake stayed away from us without someone he knew personally to help him.  (on of the hardest things I have ever done).  Before we left I was trying to explain to the staff he was not able to turn over and he would have to be turned regularly in the night.  The nurse nonchalantly said, "Not a problem all he has to do is push the button and we will be here." Sounds simply right?   Not for a Duchenne patient who #1 cannot  reach to get the button and  #2 then push it. Finally the research coordinator understood and had maintenance replace the call button with a "soft touch" button.  You could almost breath hard and set this button off.  (This made leaving a little better. Not much but alittle.)I placed the button where he could easily touch it and David and I positioned him in his favorite pose and we left.  I kissed Dake goodbye and he told me not to cry.....he was calmer about it than I thought he would be.

Early the next morning we arrived in the hospital and Dake was in an awkward position for him. I greeting him cheerfully and said, "Hey,  we all survived!" I asked him how it was last night and he said he did OK until early morning and he could not find the button. I said but I left it right here to help you. One of the nurses who took his vitals moved it during the night thinking he just had to roll to touch it and call. I asked him, "What did you do?"  He said he yelled for a nurse until the lady next door pushed her call button to get help for him. (my stomach did a flip flop....ugggh.)   Within thirty minutes David and I were worn out adjusting and arranging him to a comfortable position. He was almost in a panic, he was in constant need of us all day.

I do not know if this was what triggered the moment in the restroom at the airport or not.  But I think reality kinda showed him (even though he knows)independence may not be plausible.

I am not sure but it hurts either way.

Wednesday, July 13, 2011

Picture at Johns Hopkins July 13, 2011

  Dr. Leung performing a pulmonary function test on Dake....
.Looks like Dake
might have smelled something

 Dake is with Dr. Genila Bibat, the research coordinator  for the research team.

 Rodney Cobb doing an ultra sound
 on the artery on Dake's arm.
 Hardest part is Dake staying
 completely still for five minutes...
this was not at all invasive.....Yay!
 Dake says this is getting a waxing done of his belly..
He told Rodney to be gentle.  "RIP"

Waiting....lots and lots of waiting.....

 At least he gets to wait while resting this time...".Nighty Night Daker!"

Started the Day with TESTS!

Dake arrived early to Johns Hopkins.  He started the day off with tests. His first test was a pulmonary test called a Forced Vital capacity...It is when he blows with force in this instrument to check how his lungs are working. Then he did the Pincher and Grip Test. This test measures his muscle strength in his hands and arms ...then an all over physical was done as well as an all over muscle assessment. .   At 9 o' clockish he went to get a Flow Mediated Vasodilation (FMD) ...this test is an ultra sound of the main artery in his left arm going to his heart. They are checking the dialation and flow of blood in this artery.. Then the ever famous urine test was done.  Following the above test the neurologist had a CT of his abdomen to check for fluid on his stomach. This is not part of the research but the neurologist thinks his stomach maybe collecting fluid and she is checking to make sure  . David said the only thing they would find would be "hamburgers" in his stomach....

The cardiologist came in a discussed what was ahead and what he has seen so far.

We answered a several page questionaire about his daily life.  He finally was able to eat at 2:00 pm today....He was more than ready.

The very first pill was given to Dake at 2:00 pm.......It has begun.......!

Dr. Leung who is doing her fellowship in  neurology came in about 30 minutes after he took his first medication and ask how he was feeling..????  Dake replied, seriously,  "I believe I can get up and WALK!"  He said, "It works, it works!"  She does not know Dake's sense of humor....Her expression was priceless.....She finally realized he was teasing and laughed.  It was too funny. 

Now we have more waiting to make sure everything goes well.

We finally Made it to Baltimore

We left Huntsville in a crazy rain storm.  When we took off as the rain was pouring down and lighting was in the distance. Soon we were in the middle of the clouds then in the middle of our air time we climbed up above the clouds and the sky was so amazing... the beauty of the sky was awesome. The sun highlighted the clouds and it made you feel like you touched a piece of heaven.....

   Getting on the plane went well and not any trouble. The beautiful sky gave me lots of hope all was going to go well.  Then we landed.........Dake told us prior to landing  he had a major" wedgie'. We could not help him until we landed without looking like we were molesting him.  We couldn't get up and move him because we had to stay in our seats most of the way because of the storm and turberlance. The warning  signs turned off and we were finally able to  relieve him . We landed.  Everyone emptied off the plane and we patiently waited for the exiting aisle chair to arrive. We waited and waited and waited...the time for our handicap shuttle (which I triple reminded them to have a handicap accessible vehicle because of our last trip)to pick us up came and went and we waited and waited.  Let's just say this is the part where the "straw broke the camel's back."  The good news is David got to spend the night with Dake and I in the hotel. The bad news is David almost had to spend the night in jail. Surely, we are not the only people who ever traveled with a motorized wheelchair but from the reaction of the airlines you would think so.

We finally made it to the hotel....all three of us. It was around 9:30 pm and we were starving....we had not eaten since breakfast.  I found this four star hotel online in  package deal with the airline tickets cheaper than a 2 star hotel. The hotel is historical and gorgeous.  The man at the front desk told us the restaurant would be open until 10:00 pm. This gave us about 30 minutes to get in our room and back down to the restaurant. When we got to this beautiful restaurant, the waiter was friendly and went to seat us.  I was leading our group to the seat the waiter had appointed for us. He gave us wonderful table overlooking the entrance. On the way to our table, I saw a little mouse scurry across the floor right by our table. (ok....beside the fact, we were in an eating establishment  and we saw a mouse ......mice are my least favorite things on the earth. Ok, honestly,  I am kinda scared of the furry things uggggh)....We told the waiter and he laughed and said yeah I saw it too......NOT GOOD!
 ( But I did not scream at least....)

Tomorrow is a new day.....right?

Tuesday, July 12, 2011

Today We Take Off to Baltimore

We leave for Baltimore today.  Got everything pretty much ready to go and trying to get details for Gracey settled. Hopefully we will get there and settle down for the night. The day will start early tomorrow.  David is not feeling well so it will be harder all around since he can not really take a moment to recoup. He is having headaches lately....we checked his blood pressure and it was elevated just slightly so we a keeping an eye on it.  David does not usually get sick but  definitely does not have headaches. The heat could be a factor possibly.  Being a caregiver you do not have time to be sick or feel bad. The show must go on. Pray he feels better. 

Dake goes and gets his medication starting tomorrow.  He will either get the actually medicine or a placebo. We will not know and even the doctors will not know, only the computer.  After six months and lots of evaluations and test we will know if he had the actual drug or not.  I pray that the best for Dake happens whatever that is. 

Monday, July 11, 2011

Last Minute Details for Trip To Baltimore

Trying to finish the last minute kinda stuff. I did triple check the shuttle because of the problems last time. Dake does not seem nervous but does not look forward to the physical trip.  He dreads the ups and downs of traveling in a wheelchair.  But some things are not avoidable. So we leave, Tuesday, July 12 in the evening out of Huntsville. Gracey is staying with grandparents again and my nephew will be there too so she will have plenty of "picking on" to do....poor Nick!  Nick has agreed to teach Gracey his soccer skills while we are gone. So they will be busy.

Saturday, July 9, 2011

A Day at the Creek

Today we meet family in Minor Hill at Mt Zion at the creek.  It was an absolute perfect day for a picnic and playing in the creek. This spot on earth is such a unique place. It is pure and simple. Today, in the age of technology, it is refreshing to see nature entertain young and old in it's pure simplicity.  (by the way, no cell phone service in this area)

Every year we frequent this same place out in the "boonies" and every year we get lost getting there. It is so far out that the pavement turns to gravel and soon turns to dirt before arrival. Some streets have names others don't. Every year I vow to take a can of spray paint to mark the way. This year there were pink balloons marking our path. We assumed that someone in our group had a similar idea of marking the way and graciously helped us.  When we finally arrived we discovered a little girl was celebrating her birthday at the pavillon by the old church. We are just glad it lead us to the right place.  This place is so tucked in the woods that not only do we get lost each year going to the creek we seem to get lost coming back out....

The rain caused the creek to swell and brought more fun for the kids (old and young) as they played in the natural water slide.

We all had an amazing time.  I have to admit with all the fun and sun my mind occasionally drifted to the events ahead for next week. We leave on the 12th of July to return to Baltimore for Dake to start his treatment. I found my mind wandering in apprehension of the week to come.  As quick as my stomach would do a flip flop from the thoughts of Baltimore, I would get splashed from giggling kids back to reality.  It was a good day.

Dake and Nick

Dake and Nick being "Dake and Nick"!

Friday, July 8, 2011

Family time and Visiting...

Nick, Dake's first cousin, from Savannah, Georgia is here visiting for a few days. They have hibernated in their own world with technology and have enjoyed each other. Every now and then Gracey will join the mix.  I will hear them occasionally laughing at some funny youtube they have discovered.

Yesterday, we got out of the house and went shopping at Bridge Street Outdoor Mall.  The day looked perfect weather wise then we came out of one store and it was pouring down rain. Luckily we had some umbrellas in the car.   Dake is usually miserable if he gets wet but his electric wheelchair does not mix with the rain at all.  The sun played peek a boo and we were able to enjoy our day.  We did make a mistake of going into the Mac store.  Dake has been wanting a Mac for three years.....but now our Christmas list has already grown....very cool place.

Today we will go to Mimi's (David's Mom) house in Tennessee.  We have family from Cincinnati coming to visit and spend a few days.  We will see the new addition to the family for the first time, Lucas, he is child number 7 in his immediate family.  We are a excited as always to see everyone and play with the new baby.

This month is full with travel.  On the 12th we will return to Baltimore for Dake to start the medication for the treatment of the heart.  Then on the 27th, Gracey and I are flying to Houston to move Lyndsey here after her 3 year apprenticeship under a master chefs at the Houston Country Club. We are excited to have her closer. The job hunt is on....still waiting on the instructor job in Tuscaloosa.  Mrs. Weatherford and my mom will hold down the fort here with Dake.  I am concerned if there is a situation that Dake will need to be lifted in the day hours because David is an hour and a half away during the day.  Phillip is interning at Browns Ferry but does not have transporation and he does not drive.  Pray no needs to lift him will come up during this time. It is an unperdictable situation for sure.

Tuesday, July 5, 2011

What a Great Fourth of July Weekend

      We are back home from the mountains. We had a blast spending time with family and friends.  We did not take Dake tubing or rafting because the water was low in the mountains  which would have been more difficult for him to make it over certain areas.

    We stayed at the Yearwood Cottage, the family cottage. My grandmother was a Yearwood. Her sister owned the cottage and after her death, my great uncle, the only living sibling of my grandmother's family owns it.  Uncle Al is so generous and shares with everyone. It is always such a wonderful time to go.  The mountains are always awesome but the fact we have a place to go that we KNOW will work for Dake just adds to the enjoyment for Dake and us. No anticipating obstacles that will cause frustration for us. It is truly a place we can relax and we are so appreciative of Uncle Al's generosity.

Dake was able to climb Laurel Falls Mountain in his chair because it had a paved trail.  Dake is terribly afraid of heights so this was a mission of conquering fear for him. He did awesome! We had several pass us on the way up and down but that is OK....he DID it. He is fortunate to have friends and family to be patience with him as he accomplished this feat. I think he was pretty proud of himself too.

He wanted to eat pancakes and we ate at the Smoky Mountain Pancake House on Saturday in Pigeon Forge. He was able to well fulfil this mission. They were so delicious.

We attended the first 4th of July parade at midnight on July 3rd in Gatlinburg. Dake got tired (as well as all of us waiting for the parade to start) but he enjoyed it.  It was kinda exciting having a parade at midnight. Daisy Duke was the Grand Marshall of the parade.  I believe all the male attendants of our group enjoyed seeing her.....I think the memory of her youth days were quite the highlights for some of them.
Everyone got to put one thing on the "wish list" to do during the weekend. Gracey wanted us to have an Old Fashion Photo taken of everyone. Her choices were to be "hillbillies", a "saloon scene" or "gangsters".   She did not think the hillbillies had very fashionable costumes and I highly discouraged the saloon scene, so we went with the gangsters.....(I am not so sure I won out either way. Let's just say wearing fish nets in public was not my idea of  relaxing in the mountains......) We landed up with a funny memorable picture. 

 All in all we were able to accomplish many fun thing, as well as relaxing things with our friends. We are very thankful for the moments away. Pictures to come soon.