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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, June 30, 2011

Am I Crazy or What?

      About a year ago we bought a new doorbell of those you do not have to wire...just put the batteries in and go. It worked great for a few months.  One day the doorbell rang, Dake announced someone was at the door, (so I knew I wasn't just hearing things_)..  I went to door but no one was there.  The same scenario repeated itself at least three more times, I could not figure it out.  One the fourth time, I noticed a UPS man was delivering a package across the street to my parents. I watched as the delivery man ran the doorbell at my mom and dad's house. As he ran their doorbell my doorbell echoed his motion. Eureka! My doorbell only works when someone rings the doorbell across the street at my parents house!  When you ring the doorbell at my house......NOTHING!   (of course, I could be ringing some strangers doorbell for all I know.) So if you come  to visit you have to cross the street to push the doorbell button at my mom and dad's and I will come to my door across the street at my house...hahaha...
   .I have dissected  and examined the doorbells...I know the frequencies are mixed up but I cannot figure out how to fix the situtaton....If you have any suggestions please reply...CRAZY! Do do do do do do do do!

Wednesday, June 29, 2011

An Adventure....Maybe?

   This weekend we are headed to the mountains for an adventure....well maybe.  We are planning to take Dake tubing or rafting.  Dake is not real sure he is up for this after thinking about it. He has no core strength and this makes him nervous.  So I recruited lots of friends and muscles. Phillip and Evan Webster and possibly Perry Scott may go and help with the adventure at hand. Dake thinks rafting will be easier on him because he can have someone beside him on both sides and in front and back of him. I, on the other hand think rafting will be rougher. So when we get there we will explore both avenues....and may decide to do something totally different.
   We are planning on staying at our Aunt Skipper cottage in the Smokies.  When she passed away my Uncle Al inherited it and he shares it will the whole is a wonderful place and Dake can get around great. We do not have to anticipate any bobbles in our accommodations when we go....that is worth so much....especially if you have these obstacles when traveling.....Thanks so much Uncle Al.

Sunday, June 26, 2011

A Blast From The Past

      We heard from someone in our past yesterday. We got a comment on the blog from a wonderful young man who made an amazing sacrifice for Dake and our family at a young age. Shane Basham at age 14 took a brave step to help someone else. 

In 1992, Dake was one of 30 boys to join a research group for Myoblast Transfer. ( a muscle transfer). The best candidate for a donor is a family male member between the ages 10 to 18. We thought we had a candiate with David's second cousin, Bobby Edde. He went through the painful process of becoming a donor before he was eliminated. We still consider him an honorary donor for his sacrifice and willingness to go through the pain to help. We had exhausted all the males in the family and we had no match. Our first donor went to college with my cousin, Chris Harris at Freed Hardeman University in Hendersonvile Tennessee. Christopher Calendine was a senior and friend of my cousin.  My cousin had told our story. Although Christopher was a little out of the age range he was still able to donate his muscle tissue because he was faithful with his physical fitness. Today, Dake is thankful to carry part of Christopher's muscle tissue with him. Today Christopher Calendine is a pediatrician in Rogersville, Tn.
Shane Basham was a volunteer for the second part of the research. He went in at the young age of 14 and went through the painful process of donating muscle tissue for Dake. Unfortunately we did not get to use Shane's donation because of the disaster of the research doctor's actions. We pulled out. The doctor soon after left the country.

We are so thankful and in awe of these young men to make such an unselfish sacrifice to Dake and our family. We will forever be grateful for their willingness to take on this challenge.

We are so thankful God has put such amazing men in the path of our lives.

Friday, June 24, 2011

BAKE for DAKE Cookbooks vol. 1 and 2

       Becky Bowman told me the she found a copy of the first Bake for Dake cookbook while going through her grandmother'sthings after her funeral.  It has been awhile since I had thought about either of these two editions of the cookbook.  The first one was put together soon after Dake was diagnosed. Lyndsey helped as much as the adults going thru all the recipes collected. Betty Johnson, in Decatur, from Austinville Church of Christ was our optimistic cheerleader and promoted the cookbook among all she knew...she knows everybody. ( Betty is a dear lady who will forever be special in our hearts. She was even a helper to Dake in school in third  and fourth grade. No baby in the nursery at church could refuse her famous rocking method until they were asleep or under her "spell" of contentment )

  The research program Dake was in at age 9 turned out to be a nightmare in motion and financially.  Thankfully we found out enough information and pulled Dake out of the program before harm came to him. When you participate in research the enrollment is suppose to be free. Dake was one of 30 boys in the world to join the Myoblast Transfer research. The phase he participated in was the to phase to be  injected over 200 injections from the was down to reverse the disease. (or so we were promised.)  We were promised alot.......  not' bore you to death', I will spare you some of the nightmare.
 Long story short .....the doctor said to continue in this " promising" research each family had to put $100,000.00 on the table.  We were only about $100,000.00 short.  So numerous fund raisers were launched on Dake's behalf.  Kim Bennett started "Loaves of Love" and sold hundreds of loaves of homemade sour dough bread.....Thanks so much Kim for all your hard work. We had a giant yard sale for a month and the whole congregation at Austinville donated items for helping Dake. People in our lives were amazing and so supportive.  We could never thank them enough.

   We gained knowledge that the doctor doing the research was doing some questionable things and even causing some harm to these boys. We had gotten in about a third of our money and we decide soon after the deposit, it was no wise to go forward with Dake in the research. This was a very political situation between us and the doctor and his team. It was not a fun time and we were questioned repetitively as to "why?".  A few months later this doctor was "run out" of the country..  Today he is in Malaysia working on boys with no government to protect them. 

 The two editions of Bake for Dake,,,,,
 Dake around the time he was diagnose at age six.
 Lyndsey at age 5 when Dake was diagnosed.
 Dake and his service dog "Lurch" in high school.
 "Lurch" was a rescue dog, part labrador retriever and great dane.  He was train for 18 months before becoming a part of our every day lives. He was rescued when someone found him in a ditch after being shot. " Lurch" recovered and paid it forward... and rescue us. In Memory of" Lurch "in our lives from 1995-2002.
Picture of Lyndsey when the second edition of Bake for Dake and Lurch too! in high school.

    So the first cookbook was done to help with money we lost because we pulled out of the research.  But honestly we were just thankful money was all we lost  because of the information were had heard. Dake was fine and that was all that mattered.  The money was gone but we could slowly rebuild.  The second cookbook came when Dake was in highschool and he had his service dog, "Lurch".  The Family and Consumer Science teacher wanted her class to take on a new project. She ask me if they could take on the second  edition and include treats for dogs. We agreed and Bake for Dake and Lurch Too! was born.

If anyone is interested in a copy of the second edition of
Bake for Dake and Lurch, Too! 
we still have a few copies....all proceeds will go to expenses in Dake's traveling back and forth to Johns Hopkins in Baltimore, Maryland.
Each copy is $20.00 each
please add $3.00 for shipping if you need it shipped to you.

Thanks so much!

Thursday, June 23, 2011

Dake and his new look! SEXY????

  There are disadvantages of having a little sister who has a little mischievousness in her.  The disadvantages are further complicated especially if you can't move your arms.
   Dake, Gracey and I were shopping this afternoon.  Dake and Gracey were following behind me as I was concentrating on the item in hand. I heard Gracey just cracked up laughing out loud....Then I heard Dake say a firm but alittle desperate, "Gracey!" Gracey had tucked the bottom of Dake's t-shirt thru the neck of his shirt like a girl would do to show off her tummy and upper dept. When I turned around I got so tickled but did quickly get to his rescue.

A  special thank you to Sandra Letson for her generous donation to help Dake and his research journey. We appreciate your kindness Sandra so much,

Wednesday, June 22, 2011

The Monthly Visit from Adiba!

  Each month Dake's social worker comes and makes sure all the services he has are going well and she makes sure his life suits his needs.  This visits gets rather redundant but I am so thankful for the help we finally receive.   It looked very doubtful that we would get any help after being turned down repeatively for home health thru Dake's Medicaid.   Finally after much frustration, we went to  fight for Dake's case in Montgomery in front of a panel of officials representing home health in the state.  We pled our case and one look at Dake and we received appologies and immediate services. So it was definitely worth the trip. But back to today.....The social worker, Adiba, came again today and asked the same questions and we gave the same answers Dake signed off  and off she went. There is so much red tape to constantly do to keep up these services.

   I must admit I could not don't handle Dake by myself very easily or possibly at all anymore.  My body was beginning to break down and hurt constantly.  It started 1998,  in eighth grade Dake weighed about 80 ish pounds. I would carry him everywhere that was not accessible and in tranferring him.  He had a scooter but we did not have a van that was accessible.  We were saving to purchase a van but at the time we were not there yet. The doctor said I need to stop carrying him so much because my heel bone was a wearing down the heel pad on the bottom of my foot. I continued until it became impossible.

     I have shared with you that David turns Dake all the time, every night.  At one time I was able to help David with Dake and we would take turns turning Dake.  Around 2004, Dake grew and finally  started to gain weight after a long battle of being extremely thin and having no appetite for most of his high school years. When he did begin to gain weight and grow taller is when it became harder and harder for me to turn him. He was getting taller, heavier and at this point lost any strength to help.  I usually tell him he has bricks in his bum.  I would go to turn him and lift him from a lying position and separate my shoulders or it would cause the disk in my neck to bulge or rupture. These incidents would happen on and off.  I would not have surgery per my doctor's request because I did not have a time to heal before needing to lift him again.  I would take anti inflammatory drugs and pain relief. Bless Dake because he would try his best not to have to flip unless he was absolutely hurting.   Sometimes Phillip was able to help out until I recovered somewhat. Thanks a million times to Phillip for coming to our rescue.  I had to have a bladder surgery a couple of years ago because the doctor said the way I picked Dake up I would have so much pressure on my abdomen I literally blew out part of my bladder. Since he is taller than I am I will lean him on my body and over extend my back backwards to pick him up from a sitting position. I tend to compress my spine because of this lifting this way  too.  Only problem with surgery was a six weeks of not lifting anything heavier than a milk carton.  After getting to the point of no turning back my amazing family and Phillip once again helped me back to where I can help again.  I still struggle with my shoulders and neck occasionally still if I lift him and pull wrong.  David leaves the house at 4:20 a.m. and I will help him in the morning during the next three hours until home health gets here. And I lift him during the day when it is necessary. We have a hoyer lift but most of the time this lift does not meet his needs.
  Please do not misunderstand me at all. I would not change anything about helping Dake other than make me stronger than an ox to be able to help him better. I am very thankful to be able to take care of Dake at home.

Monday, June 20, 2011

Prayer Bracelets

Do not forget if you haven't gotten a "Heart of Dake" bracelet yet just let us know and we will get you as many as you need. Thanks to Tanya Griffin for her donation....(She would not want me to reveal that part but oops!)  You can email, call or tell us in person and we can set you up.  The bracelets are a reminder to pray for Dake as he goes through this research. As I have state before, I am not sure which way to pray. Whether he gets the drug or have him only get it in the sixth month phase.  Selfishly on my part because I feel if he gets it during the sixth month time frame then we could see from the ones before him if there were any problems.  This is kind of unfair because Dake has gone into it full force.(I need to be more like him.)

        I do pray, however, whatever God wants that this is what happens. But I also ask God to help David, Lyndsey, Gracey and me deal whatever lies before us. I cannot do it without God helping me.  I must admit I could not pray this for a long time. It was a prayer that did not happen over night or even after several nights.   I realized that if I get my selfish way (and sometimes still have selfish times) that Dake was to be health and well but God's plan did not get fulfilled, I would have let Dake down as a mother and a christian. Kind of a serendipity thing, I guess.  If I interfered with the course or plan for Dake and the people Dake has met in his journey never happens then nothing good could happen.
   Now please do not get me wrong. I DO pray for Dake's healing but only if this is God's plan for him. Prayer has definitely been a journey for me personally.   I remembered when we first got the diagnoses.  I could not pray.  I guess it was kind of like giving God the silent treatment but more I was in shock and the words would not and could not come. But because of the prayers of others I was able to speak to Him again. Because of this experience I realized that when a prayer request comes in from someone hurting never underestimate what your prayer may mean to  that person. And never forget to pray for a request. It is easy to do especially if you do not know the person very well. You are sitting in church and you hear a request.  You have good intentions but soon "life"  starts to happen.  You don't mean for it to happen but several days pass and you have forgot to have a one on one time with God and reply on the request for someone.   We have all done it help remember we have this bracelet for Dake to be a reminder to have a moment with God. Our family thanks you ahead of time for your moments you take on Dake's behave.

Happy 53d Anniversary to Dake's Grandparents!

 My Mom and Dad's Wedding Picture

Back row from left to right: Clarence Holman (dad's dad), Ruth Clark Holman (dad's mom) Joe Holman (dad), Mary Louise Johnson Holman (mom), Jewel Yearwood Johnson (mom's mom) Cloyce Johnson (mom's dad)
Front row from left to right: Jane Holman Simmons, (dad's sister), David Holman (dad's brother), Carolyn Johnson Harris (mom's sister) "Mama Wood" L.A Yearwood (Mom's grandmother)

Sunday, June 19, 2011


Made it back home and it is so good to be here....I had a marvelous time and meet some wonderful people..
Artist maybe eccentric but there is such diversity in this quirky population. This aspect of artists is what I love and definitely experienced this weekend along with some vast knowledge to apply in my own studio.

     I talked to David and wished him a Happy Father's Day from the road.  We talked  awhile and it definitely helped time pass. He caught me up on the details of the weekend. David said Dake and Perry did not go to the movies last night but they did go to eat. He said Dake has not sleep well the last few nights and he thought it was catching up with him.  He said they ate and watched T.V, for awhile. David and Gracey did go out to eat and then they went to the movie. They enjoyed both. Gracey enjoyed spending time with her daddy.

I got home in time to run over to my daddy's house for a quick hug ,visit and to wish him a Happy Father's Day in person. It was nice even if it was just for a few minutes. I am so fortunate to have him just across the street now.

David said Dake did not wake up feeling well this morning.  David teaches Gracey's class so he told him he would let him sleep until Sunday School start but he really need to go teach.  Dake still did not feel well and so David got him up and moving and then he and Gracey went to class. 

     I got in around sevenish and Dake still seems tired.  Hopeful he will sleep better tonight.

David told me Jaimee Abernathy came by on Friday night and brought us a donation to help with Dake's travel. Thanks Jamiee we truly appreciate it and will be able to use it on the trip in July. I know you did not want public recognition but we wanted to thank you. Thanks for your support and kindness.

We are thankful to all of you who support us with encouraging words, donations, but especially with prayers. Without your prayers we wouldn't be able to make it out the door.  Having God on our side has been shown to us  over and over through all of your kindness and support. Thank you.

Saturday, June 18, 2011

Last Night in Atlanta

  I chatted online with Dake last night.  We have never communicated this way (with each other) was kinda fun.  

After the workshop this afternoon I called home and got the answering machine.  I heard Gracey's voice on the machine from when she was was so sweet....I hadn't heard it in forever.
   David called back soon.  He said they were giving Dake a bath. I asked if he had a date?  He said no, but he and Perry were going to the movies.  David said he was taking Gracey to the movies too but they were see a different one from Perry and Dake.  Gracey said they were seeing Mr. Popper's Penguins in the background.  She was very excited to have a date with her Daddy. 

    I had an amazing workshop day and have loved the whole experience. (I am definitely the little fish in the big pond. But I am so enjoying every minute.)  Tonight I texted an old friend I hadn't seen since my wedding.....29 years ago.  We meet at Maggianos for a great meal and wonderful visit.  Our dads owned and worked at a pharmacy together all of our lives... our parents still staying touch and keep us updated on each other.  We caught up, ate and chatted for 2 hours.  It was so great to see her and have a little time together.  A very nice touch to end this amazing day.

I will have one more day to the workshop and then in the afternoon I will head home. Loved my time but ready to see that crazy family of mine. 

Thursday, June 16, 2011

All by Myself

   I am in Atlanta for an art workshop. It was a birthday present from January.  I am so excited about learning new and wonderful things. I left today and Dake and Gracey headed across the street to their grandparents until David got home.

  It is so unbelieveably quiet here..(I already miss them ...isn't that pitiful)..I just called home and told them I was here and in the hotel.

 Next door to the hotel is a beyond amazing art store. It is like a 'Disney World' for artist.  I only spent an hour and half in there this afternoon.

The workshop will start early tomorrow so the quietness won't seem so bad then.

I talked to Gracey tonight and she said Dake and she were making a habitat (I don't think I knew that word when I was 10.)  for lightning bugs. She is going to use them as a night light tonight.  She and Dake always have fun projects together.

David said Gracey fixed supper tonight.  She fixed hotdogs.  To build her confidence in cooking he ate FIVE! (she alt to feel pretty confident...ugh.)

New "Heart of Dake" Bracelets

       Last night Will, (our youth minister at church), ask us to speak to his teen class about out life. Dake was nervous and asked me several times that day, "What do they want me to say?  My life is not that interesting."  I replied with, 'I don't know but  Willl will ask questions to make the conversation start going."  His repetition starting making nervous....this of course ending on the way to church with a fussing match with nerves as the culprit. Dake knows how to push my buttons.  At this point, I told him to go do it by himself. But when we arrived we all went in to the teen class smiling.

  Isn't amazing how we can turn it off in a second when the setting changes. We use to tease my mother when she was fussing at us and the phone would ring and she would answer in the sweetest, "Hello?"

The class was full of teens, kids and a few adults which we appreciated especially the support.  Will started the class off and then asked us some questions. I talked about the details  and as the conversation flowed Dake slowly began to emerge. They were able to see Dake and his personality a little bit.  The guys in my family tend not like to public speak so I talked the most....Gracey was quiet but she was not born during this time..Lyndsey would have shared if she were there. She remember details like me. Maybe it is a girl vs. boy thing I don't know.

Anyway the class was very nice and asked a few questions. Everyone listened as we told them the boring details of our lives. We appreciated the time to share.  After class, Tanya Griffin had purchased "heart of Dake" bracelets and we handed out to everyone to wear....Thanks Tanya for your purchase and wonderful friendship. Thanks Will for the opportunity.

If you would like a bracelet let us know and we will get you one.

Wednesday, June 15, 2011

David's New Throne...

We wanted to get David something he would really like for Father's Day.  Since I could not afford to get him a 69 Chevelle I opted for this instead.   I think he will like it.  Gracey fixed him a card and a decorated "'T" to add to his bathroom museum.  He will receive it early because I will be in late on Father's Day....We are so blessed to have him.  We love you David...
 David's Father's Day Present

Gracey's card and decorated "T". It says #1 Dad!

Dake and Lyndsey in 1992

Dake is 8 years old wearing his Dad's UT jacket....Lyndsey is 7 wrapped up in her favorite sheet.

Tuesday, June 14, 2011


       Siblings are often over looked during diagnose time and thru the course of the disease.  Lyndsey was afraid to leave me. Part was to protect me and part was she was afraid something would happen to her.  Lyndsey was my little red headed, high spirited child that was ready to conquer the world...To most she still displayed these amazing qualities but every now and then these little insecurities and fears would resurface and made life hard for her.  After we got the Duchenne part of the diagnoses to the Muscular Dystrophy Lyndsey was going to have to give a sample of blood to check if she was a carrier of the disease. ( Females carry the gene for Dmd and males actually get the disease.  More on this later.) I had given my sample of blood and it was Lyndsey's turn. They had a nurse and doctor try to get a sample and Lyndsey became hysteical  fighting and screaming “No. No”. They added another nurse to the crew to help. They were still not able to hold her down. They asked me to help and calm her down. I tried to talk calmly and softly but she refused and shouted at her full lung capacity , “If you don’t take my BLOOD…. I want be SICK.” over and over again. (She thought Dake got sick because they took his blood so she did not want to be sick so she did not want them to take her blood.)  I have to leave because it was tearing me up emotionally. The doctor puts her in a straight jacket and she gets out of it.  After some long torturous minutes they somehow were able to get what they needed.
  Lyndsey’s blood test came back telling us she is NOT a carrier.   I am NOT a carrier either.  This makes Dake's body the creator of his own disease. He is a sponteous mutation. This is extremely rare and unusual.
  In third grade, (3 years after Dake’s diagnoses) she had a difficult time leaving me every day for school. Her teacher was so compassionate and worked with her to reassure her everything was fine.  It was so difficult having to leave her every morning as she begged me to not go.
So she went into her classroom crying and I left in my car crying.

Gracey has never known Dake as a walker.  She became a part of our family when he was 15 years old and already in the chair full time.  Her perception will be so different from Lyndsey’s.

Monday, June 13, 2011

Lyndsey Goes Home

Lyndsey flies back to Houston tonight.  Tonight's goodbye was not as hard as the ones in the past.  This is because in six weeks Lyndsey will be finished with her 3 year apprenticeship in culinary with top and master chefs at the Houston Country Club!   She will be hopefully closer to home.....depending on her job of course, but she is hoping to be closer and so are we.

Sunday, June 12, 2011

Wedding Pictures

Gotta GO!...Gotta GO!

         We started our journey back home after having an amazing time with family and sharing in the union of my nephew and new niece marry. Dake did an awesome job in the wedding after worrying he was going to mess it up somehow.  I assured him even if he fell out of chair and rolled down the aisle my nephew and his bride would not care....they just wanted to get married!.  LUCKILY, he did really well with  no falling out of his chair or rolling . He just wanted it to be perfect for them.  It was rather entertaining as the two flower girls did everything precious down the aisle. One of them was lounging back with her arms as she watched the ceremony while her sister ran to find momma.  They were adorable.  Their mom was not so sure but they were.
           As we traveled homeward, we needed to take a bathroom break after two hours into the trip.  We stopped a rest stop in Georgia. Rest stops are a good place because the newer facilities  sometimes have family restrooms.  You know the restrooms with a single commode, with a changing table for diaper changing.  There is usually extra room for a stroller or a wheelchair.  Unfortunately, this particular one was older and did not have a family restroom.  We load Dake back into the van and head down the interstate to look for a store or place with one of these restrooms. He tried not to think about needing to go as we rushed.  On the way everyone in the van watched for billboards for a Target.  Most Targets have family restrooms.  We did not find one but did find a Barnes and Nobles. B and N in our local area has a single restroom and it would work great since I needed to accompany David and Dake into the restroom to help.  We got in the store and found the restroom but it is not a single room.  It is a several stall kind of restroom....but there was not any traffic at the time.
                 You know when you were a kid  how you always wondered what the opposite sex's bathroom looked like.....even to the point of daring your friend to go peep or even push someone in as you walk by?  Well, I think I can say with confidence I have seen more men's restrooms than the average gal. (not something to brag about believe me.)  
                  The routine is David goes in and checks if the coast is clear and signals for me to come in if it is.  My mom stoods outside the door and waits just in case a male wants to enter while I am in there helping with Dake. (Bless her heart she did not know she would have to do guard duty on this trip but was a trooper nonetheless.) David picks Dake up and I quickly help with his pants. Get him situated and run out while David stays with Dake.  (usually I carry a "temporarily Out Of Order" sign I made in case  we do not have an extra person to watch the door.  I also carry a door stop if it is just me so I can jamb it under the door after we enter to avoid embarrassment.   Believe me I had to learn these tricks the hard way.....another story for another time. I did not have my supplies with me today.)  Anyway back to this story.  I relieved Mom of her post and waited for David to give me the signal when he was finished and needed help with his pants. I waited and one man entered.  And waited and an another man entered.  Then one man came out and I waited. I was starting to get a little concerned at this point. I had looked at all the books surrounding the entrance of the restroom. Trying my best to look non conspicuous as possible while I waited.   My thought was the math did not add up. There should be one more man in the restroom. David puts his finger over his mouth as to shush me and has Dake drive up as close to the outside door as possible. I glance in...(oh, you know you would have too!) fixing Dake's pants at the same time in warp speed. I see these MEN feet with pants bunched around them under the stall. I opened my eyes super wide as to tell David with my eyes, "I am going to kill YOU!"  (He knew exactly what I said. After 29 years of marriage you have these subtleties down to a "T".)
 In the van David explains they were finish 20 minutes before but this man. The guy remained in the stall and was smoking but would not leave.  He did not know what else to do because they were honestly not wanting to stick around. I am still trying to forgive him. (lol) Soon the drama was over and we were on our way.  I was hoping Dake did not get too thirsty on the way home.
Back Home safe and sound but mostly thankful for our blessings.

My Handsome Son

Saturday, June 11, 2011

The Dry Run....Rehersal Day June 10th

Friday we went to get Dake's tux fitted. . Prior to Dake's fitting his great aunt who stands all of five foot one and cute as a bug made a deal with Dake.  She teased and agreed to stand in for Dake if he really, really could not be in the wedding for whatever reason.  Dake tucked her info in the back of his mind.
     We entered the store and got his pre ordered tux.  The nice lady instructed him to go try it on in the dressing room to the left. David and Dake moved in that direction and I asked if they need me...David with big eyes and a raised brow quickly answered, "Yes!" So we all three entered a small 3x3 closet. Inside this small square Dake has his chair and I am squished up against a wall on my tip toes, David is hovered over Dake but can not move an inch. We look like a bunch of clowns in a telephone booth. Now we actually have to move. Lyndsey is waiting patiently outside the door in a waitng area. If there were room she would have been ask to come in and help. In the meantime another customer comes in and goes in the neighboring closet to try on his tux.  So David and I begin the process of the pulling and tugging of dressing and undressing. We get his pants on and they pull up slightly below his chin. I roll them three times to his waist, calming down with each roll.   We are bumping and knocking the walls and echoing grunts of pain as Dake says, "I don't bend that way."  We exit our cozy fitting room at the same time our neighbor makes his entrance wearing his new tux. He glances quick as we singly files out of our space.  I see he has glanced our way and I smile and say, "You look really nice in your tux too and smile cordially." He acknowledged me with a nodded but gave me the strange look.  We finished up and left. Lyndsey starts to tell us how neighbor must have perceived the noises coming from our side of the dressing rooms.  The grunts and moans and comments could have been translated in a whole different light if you did not see us go in. The clerk even got tickled. 
     Dake looked so handsome in his tux but he said it was too much work and he thought he would just have Aunt Carolyn stand in for him.  He was joking of course but funny at the time because David and I looked like we had been put in a washing machine on the spin cycle.
(P.S. The shoes fit....YAY!!!!)

Thursday, June 9, 2011

Going To Savannah.....Wedding Time

Today we are traveling to Savannah for my nephew's wedding. We left early because we picked Lyndsey up at the airport on our way in Birmingham. We waited last minute to wake up Dake to let him rest as long as possible. He was kinda grumpy because we rushed him and he does not like to rush. He slept most of the way to the airport.  He said "Hi" to Lyndsey and then he was back to sleep. He wakes up occasionally to have us adjust his arms and/ or legs or for a drink of water. Sleeping on the way is best because he travels better this way and he will need all the extra rest he can get for the weekend.

Explaination of the Doctor's Visit

  We immediately tried to explain all we could to Dake and Lyndsey because they heard the initial diagnoses with us. We had so many unanswered questions ourselves.   They saw the shock and the tears that accompanied with the announcement.  Seeing your parents fall apart at 5 years old and 6 years old has got to be a set up for major insecurities and fears.  We explained " Dake's muscles were sick and did not work like everybody else." We tried to reassure them as much as ourselves we were going to stick together and do whatever we wanted to do even if we had to do it differently.  We told them we cried because we were sad and cried because we did not want either one of them to be sick.  But we told them everything was going to be OK and not to worry (even though we were not sure ourselves).  We told them we had lots of doctor's visits ahead of us and lots of questions to ask.  If they had any questions just ask and if we did not know we would try to find out.
Our wide eyed babies absorbed every word of encouragement we tried to share.  We all hugged and snuggled and we all slept together that night.

Wednesday, June 8, 2011

Remembering the Day We'll Never Forget...August 29, 1990

    In early 1990,  I remember thanking God for my family and the fact that they were healthy and happy. I tell you this to illustrate how deceiving Duchenne Muscular Dystrophy is.  I knew Dake moved slower than his sister, who was 15 months younger, but honestly his personality was a more laid back kind of personality.  His sister came out of the womb ready to conquer the world and conquering it by being the best. I definitely had two wonderful extremes to nourish and nurture.  Dake moved slower but not enough to worry something was horribly wrong. 
    As a young boy, he had such a big heart and was so compassionate.  He was quiet and only talked in public when he had too. (at home he was not quiet)  He still laughs because when he was in kindergarten and got in trouble for talking, I was so excited he talked.  We went to McDonald's to celebrate!

      At the end of his previous school year, the school had screened the children for scoliosis. Dake's report came back saying he had a slight 6% curve. I consulted a physical therapist friend that encouraged me to watch it but not to worry.  I went to the library  and read up on all the information related on subject.   Little did I know I was reading about my future. I came across a little blue box in the scoliosis section. It  said "sometimes when children that are diagnosed with scoliosis and have large calves sometimes have Muscular Dystrophy." Dake had big beautiful calves.
    At that point my heart started pounding and I sat down in the middle of the aisle at the library. Muscular Dystrophy meant no more than the Jerry Lewis Telethon to me.  I looked up muscular dystrophy in medical encyclopedia type book.  It said that muscular dystrophy was a genetic and inherited disease. I closed the book and was able to take a breath and said, "Thank God", (out loud).... we did not have muscular dystrophy anywhere in my family or David's family. I returned to my feet and left and did not think about that little blue box again ........ at least for awhile.
      School started in 1990 and he went to the first day of school. He got up that morning with a cramp in his calf, in his leg.  It was extremely tight (this had never happened before). I gave him some tylenol and rubbed it and was sure it would help thinking his day should be fine.  Dake had beautiful legs and his calves looked so muscular.  He was often asked if he biked all the time or if he played soccer all time with those  muscular legs? (Another deception of this disease.)
     School concluded that day and much to my surprise Dake's calf was still hard and cramping.  He did not complain too much but I know it had to hurt. I called the doctor and took him right in. Worrying, I asked the doctor about that little blue box.  He assured me  I was over reacting.  He said, "Dake was premature and because of that his muscles are slightly delayed but he was constantly catching up. But he is fine." (And he was right. He was continually getting stronger. Another deception of this disease.)  But I asked him what would it involve to just check for M.D.? He said a blood test.  I said please just run it and make me feel better.  He did.
    It was August 29, 1990, the doctor called and ask if David and I would come in after the last appointment.  My heart sank. I called David and his heart sank.
   We walked into the doctor's office of silence.  It was not like it was when we usually visited. Our kids are with us. The doctor said he could not believe it. He even ran the test again in case of error but Dake had Muscular Dystrophy.  He did not know what type just that he did have it and we were to go to Children's Hospital tomorrow and see the neurologist. The doctor cried with us. The kids did not know what was wrong. As we walked out, we were handed our bill for our visit....(what a final touch for a horrible day!)
   We had dinner plans with friends that evening. We were already late.  On the way home, David began hitting the steering wheel repeating "NO, NO, NO!  I tried to get him to pull over but he did not even hear me. I was trying to calm him down and the kids down.  Honestly, I am surprised that the steering wheel wasn't bent.  We made it home and our friends, volunteered to take the kids and give us a moment.  I did not want them out of my sight. I just wanted to hug my family and never let them go.  Lyndsey would not go but Dake did.  Lyndsey would not leave my side. At this point, Dake knew he was sick but he did not see what the big deal was because he felt fine. Dake honestly still carries this kind of attitude till this day.
    David and I knew we had to have answers right away because the doctor told us in from of him and Lyndsey.

More later, not easy to relieve some of this stuff so I am going to take a break.

Tuesday, June 7, 2011

Got the Next Reservations

We got the reservations all set for the trip back to Baltimore on July 13th and 14th.  I still have to set up the shuttle reservations. After the last experience, I am checking into other companies for shuttles. I will make those reservations after doing more homework. We are staying in a different hotel this time. We were able to find a package deal at a better price.

    We have new neighbors after being neighborless for about 2 years. The couple is from Hawaii and seem friendly.  Dake went outside today and went over to say, "Hi".  He enjoyed a few minutes of getting to know them. 

    Trying to get the last minute details ready for our trip to Savannah.  We are getting excited for Nathan's and Chelsea's wedding and being with our family. My brother has rented beach houses on Tybee Island for us all to be together.  My brother and my sister-in-law are always good about finding places for Dake to be accessible. We are going to take our portable ramps because we will have a few steps to conquer.
   Having a handicapped family member effects more than the immediate family it effects all family.  We have been so blessed to have a wonderful family who tries to make extra efforts to make things comfortable for Dake and us.  We are so thankful.


Baby Birds


   Dake and Gracey found these baby birds in the back yard on Sunday.

Monday, June 6, 2011

Shoes for Dake

         We went to find Dake a pair of black shoes.  Actually, these shoes are back up shoes for the wedding. Dakes feet are really hard to fit. I am afraid the tuxedo company shoes will not fit him. His feet are extremely flat and wide.
    When he was in the fifth grade, Dake starting walked on his toes because his heel cords became so tight. We did physical therapy with him everyday sometimes more than once a day to prevent the tightening.  The therapy really does not prevent the heel cords tightening but hopefully slows it down.  
    At age 12, he had an operation to release his heel cords to help him walk again on his feet. Dake did great with the surgery and even with walking cast for six weeks. But when the casts came off he did not do like most boys after this surgery.  Dake had extreme difficulty walking after this surgery. Dake said his legs felt like jello.
   David and I attended a Parent Project Conference for DMD in Pittsburgh, Philadelphia.(This conference were set up to hear researchers and doctors discuss research and obstacles in finding a cure for Duchenne.) I was fortunate to talk to a doctor from Beth-Israel Hospital. This orthopedist who did this procedure regularly on Duchenne boys. He explained that about 1 in 1,000 boys re-act like Dake. He said they do not know why, but that it does happen some. (In regrettable hind sight, we would have just left him walking on his toes instead of this alternative. But we were trying to do what we thought was best for him.) (Parenting is hard especially when you have a sick child.)
     Dake did continue to walk some with braces (but seldom without) and he was using a scooter on and off after this time. The scooter was becoming increasingly easier.  We tried to prolong the use of the scooter as much as possible because once he stop using a muscle he would lose it we were trying to put off using the scooter constantly to keep his muscles working.
   We found a cheap pair of shoes that will fit but they are definitely only if we have to use them kinda shoes.  It will be better than black socks.

Sunday, June 5, 2011

Forgot to Tell Dake

    Seems I told everyone about the change of dates for Baltimore except Dake. lolI need to work on my communication.  Sorry Daker....of course it could have been his selective hearing....but we will not go there.

The art show is over and now I can breath. The numbers at the art show were low this year but made some great contacts and saw an old (not old in age but friend from years ago) friend and loved the place and managed to sale a few. David picked up Gracey from camp on Friday.  He then brought her to the Factory in Franklin at the art show. She saw me from about 50 yards out and ran and jumped in my arms like she was 2 years old.....stuff like that just does your heart good. Priceless!
    Now we are ready for Nathan's (my brother's son) wedding. He is getting married in Savannah this weekend. We are all so excited for him and Chelsea.  She is adorable and I fell in love with her when I first met her when they were in high school. They both just graduated this year from college.  Dake is going to be a groomsman.  He is really excited and been planning his hair since Nathan asked him.  We are all excited because we are going to see some family we have not been able to see in a long time.....especially my two niece. They are so very special and we have not seen them or visited with them in a while.  We are planning on picking  Lyndsey up on the way in Birmingham at the airport. We will have her just to ourselves a few hours and then we will share her when we get there.  We will get in on Thursday and get Dake fitted for his tux.....this will be interesting to say the least....hopefully the measurements sent will be close....if not we will resort to the good ole' duct tape.   (Has been used in the past.  You have to be like a "Macguyver" of sorts
  when it comes to living with the handicap.....but we "gitt'r done!) In high school, Dake and his date wore duct tape clothes to prom.... it took about 56 hours in all to complete the suit and gown....they were cute. Everything is duct tape, suit, shoes, his flowers and her flowers.....everything but the undies! 

     Dake's side is not hurting anymore...Yay!
Summer is already a whirlwind.....
Gracey took this picture of Dake today!

Thursday, June 2, 2011

Change of Plans for Baltimore

      OK, we have a change of plans for going to Baltimore. At first, we were suppose to go June 20st and June 21st but we made a request to change it for a little later. We have had so much come at us at once we need a little recovery time. Luckily the research team was able to accommodate us and let us go later..New dates are July 13th and July 14th.  This will allow us to kinda catch our breath physically and financially.  Lots of time you do not have a choice if you are participating in a research study but we are thankful they were able to help us out.

Dake and my mom helped me set up for my art show in Franklin at "The Factory"....This is such an awesome place....kinda like an artist mall with cool places full of culinary temptations.  And some businesses but art related like lawyers for the creative world.... so cool.  I am in love.

Lyndsey did not hear anything today from her we continue to wait. She called but no one answered so she left a message. Maybe tomorrow! Keep your fingers crossed!

Gracey comes home tomorrow.....YAY! I am so excited! 
David will pick her up from camp and the bring her to the art show. I am so disappointed I can not go with him to pick her will be so hard to wait until she gets there...

Dake does not know if he wants to drive and ride for 3 1/2 to get Gracey (he has really missed Gracey, too but he may not admit it) and 3 1/2 hrs. back or stay at the art show with me.  Decisions,  decisions.....

Dake is still having pain in his side.  He still refuses to go to the doctor but promises to go Monday, if he is not better.  He even said it in front of his grandmother, so I have a witness in case he tries to back out of it on Monday.

Wednesday, June 1, 2011

Side By Side

Dake's side is still giving him a little trouble. He refuses to go get it check out....He did bargain with me and said if he was still hurting Monday he would go. He believes it was from being lifted too hard or wrong. He is planning to go with me to set up for the art hopefully he will not start hurting worse while we are away.

I am missing my little girl so much is just ridiculous. David called me on his way home from work pretending he was her and acted like she was was totally NOT funny.  And she has not even called me since my 3 o'clock in the morning on Monday....I feel so unneeded.  Boo Hoo! 
I hope she is having an amazing time....since I haven't heard from her I am assuming this is true....

Gracey is the "T" in Twisters..they we....Calvin and the chipmunks instead of Alvin and the chipmunks!

I holding my breath for Lyndsey who should hear tomorrow on her interview... wishing and praying the best for her..

Rubi is missing her girl too.