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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, June 30, 2012

Food and Art in New Orleans

Food and Art in New Orleans

We went to Manning’s Restaurant, Archie Manning’s Place, and George Rodrigues’s Art Gallery…The “Blue Dog” guy….Brittany and I witness a sale of a print that was frame. It was about the size of poster, 24x36 size.  The sale purchase was $10,000.00…..a print not original……Wow …I can only dream.  It was pretty awesome……,CafĂ© Du Monde for beignets.  We went the French Open Market and a quick stroll down the famous Bourbon Street…in the daylight with Dntake ‘s  wheelchair at full speed as we trotted close by.

That night Lyndsey chose the restaurant for us on her culinary knowledge.   It is so fun having a certified chef in the family.  She chose a place called Cochons.  Translated, this means pig in French.  Lyndsey picked this restaurant based on the menu and the story behind the chef. The chef, Donald Link, is a family man and enjoys putting his experiences with his family and food into what he prepares.  He  is an expert in  charcuterie. For those out there who are like me and need a translation…charcuterie is  curing, preparing and making your own sausages and meats. This chef owns the restaurant we were to eat and a deli behind the restaurant all encompassed in a warehouse . The name of the deli was, “Butcher.” We went inside the deli earlier the day before. A place  definitely not for a devout vegetarian.  For Lyndsey this was like entering a part of her own little heaven. Meats were hanging from the ceiling  in this restored old warehouse.  Several rows of freshly prepared sausages and meats adored the glass enclosed  cases that outlined the boundaries of the kitchen from the dining area. On the far wall were cubbies with t-shirts with printed logos and sayings reflecting the name of the deli . David had Lyndsey pick one out for her.(later in the week she was going to wear her t-shirt but couldn’t because it reeked of curing meat smells!)  We also purchased one New Orleans praline with chocolate covered BACON inside.  The idea of this did not sound appetizing to me but I had to try it. The praline the size of an average chocolate chip cookie was divided among all of us to try a taste.. We all were chewing looking at each other smiling waiting for the verdict of this strange concoction.   WOW..It was surprisingly amazing!!!

We arrived for our reservation at the more upscale restaurant (Cochon) and marveled at the interior of this old warehouse  transformation. Lyndsey advised us on the menu. We decided to all order something different and eat family style. We could all taste different flavors of New Orleans.  We had:

For appetizers:

Alligator and boudin…… ever of both… most .amazing alligator I have ever had….so tender it melted in your mouth….The alligator was Dake’s favorite.

Dake had Tasso a Duck Gumbo. Dake eat most of this but we all got a taste…. It was very good which explains why Dake ate most of it.

For the main course:

Rabbit  Dumplings: Lyndsey’s favorite

Fresh Red Fish: Brittany’s favorite

Brisket: out of this world….

Chicken Pasta: good but was simple.

Pork Ribs:  Gracey’s and my favorite.

For sides:

Macaroni and cheese casserole: Gracey’s second favorite

And braised collard greens….they came in a close second to Lyndsey’s who has the best.

David’s favorite? … All of the above.

The trip was a full of adventure and lots of great food and art.

Friday, June 29, 2012

PART TWO of Swamp Tour

Continue with the Swamp Tour….

As the long, bumpy creature surfaced above the water she opened her huge mouth wide to catch a flying marshmallow, as big as a baseball, thrown by the guide on the boat. Marshmallows??? Really??? He explained to us the hibiscus flower grew wild in the bayou. Years ago the plant was called the Mallow plant. The mallow plant grew in the marsh, which became the” marshmallow” plant.  The roots were used to make a white sugary treats much like the marshmallow. Alligators would eat the roots of the plants. So, this is why  guide spends $35 a week to feed all the alligators we meet that day….which were about twenty. These gators would come only when he called their name one by one. He finished the tour by pulling an alligator three years old from a cooler behind him. He past the gator around and we all but Lyndsey held the alligator but she did admire her. (She said, she did notthave time to prepare mentally to hold the alligator.)   It was an awesome experience. The most surprising part to Dake and I  was how soft she was to the touch.

When we finished the tour the  guide  recommended a place on bayou. His buddy had for the best seafood around.  As we  exited the boat we chatted with  him and got specific  directions  to his  friend’s restaurant.

Let’s just say , “out in the boonies ‘has a whole new meaning to us now. We arrived to a place one  might call a “hole in the wall”. But as Brittany, my niece, pointed out there were very few walls so she wasn’t sure she could even call it by that name.

Looks sure  can be deceiving.  We devoured the best country low boil crab, shrimp, and crawfish ever. Great Day!

Thursday, June 28, 2012

First  Night In New Orleans

The  first night Dake slept  very little.  So that means David and I slept very little….especially  David. Dake just could not get comfortable.  We brought  all his pillows and all the sound  machines but nothing worked.  David and I repositioned him at least 20 or more times that night. All of the above equals  very grumpy, ill people. 
Upon getting up the next morning, we had plenty of  ugly, grumpy banter  flying  around. Spirits were down  and we had not even started our day. We headed to breakfast after my we gotta get it together speech….(which usually does no good when the sleep deprived  are my audience.)  Remarkably, after  a little  food in our  bodies  and  reviewing the schedule ahead, we seemed to shape up.

New Orleans,  The Swamp Tour

Lyndsey had a swamp tour for us and had called ahead and checked the accessibility beforehand  so we would not have any unpleasant surprises.  This tour was family  owned business and the first impression  gave us that feeling of a personal touch. It felt like when you were a kid going to church camp. At least a  camp you have been to for years. It was a good warm feeling with all the familiar smells.
       We board the pontoon like boat with no problems or trials….so we were all happy and ready for the journey ahead. We were all hoping we would see an alligator and exchanging  exciting banter with each other and the other passengers.  The boat held about 20 riders.   Our tour guide was  a Louisianan  of French  decent whose family exiled  from Acadia, which is present day Canada.  His grandmother was  an Acadian  Indian and was a major part of his raising.   He was rugged and rough around the edges . His accent was as thick as the murky waters ahead.  His school career was limited  to  third grade . But we would soon  learn we  would  learn more from him than we would  ever  image…His classroom was the bayou.  He told us he was offered a job at New Orleans University as a professor In History of the bayou.  (A course I would definitely love  to  enroll.)  He turned it down because he would have to live in the city because his home is in the bayou!
As we cruised down the waters, our  new Cajun friend  calls out a name and clicks his teeth out the side of his mouth . The “call” was like the friendly request one would use  to  retrieve your  family dog. We all are looking with great anticipation . Out of the murky waters a couple of eyeballs popped up . Slowly, the eyes glide toward  the tour guide’s end of the boat to reveal her bumpy, long, rough looking  body…..
To be cont’d……

Wednesday, June 27, 2012

Catching Up!

It has been awhile and it is time to catch up……..

In May we decide to take a quit break and we headed to New Orleans. My niece Brittany joined us which is always fun having her on our adventures. I booked the hotel but  Lyndsey  planned all the events and adventures which made it so nice for David and me.  We stayed in the Arts District which was a happy surprise for me. When I booked the place, I did not realize it was in the Arts District…(honest). We stayed at the Embassy Suites to get a room with extra sofa bed. This should add to the comfort and easement of the stay.  We arrived and a bell hop meet us as thou he was expecting us personally.  He stayed with us as we were getting our room keys. He notice we did not have a handicap room. (Rarely do handicap rooms come with two beds but one and of course we need two beds and the sofa bed so we figured we would figure it out when we saw how things were laid out.) He told the desk clerk that we definitely need a handicap room and fix it right away. WOW, never ever has anything like that happened to us. That someone other than our group make a point to help with the handicap details. Of course ,we knew the answer but the effort on his behave made me want to hug  the big  African  American New Orleans native. When the clerk replied the only ones available were  single beds he  insisted a chair for the bathtub be brought a.s.a.p. to our room. Whoa…..I am in the twilight zone…..We always have to go buy a chair when we are at a hotel for Dake  to be able to bath even if it was a handicap shower.  ( Dake ‘s core strength is so limited  he has to have a plastic  chair with arms or he will not be able to hold himself up.)  We barely got in the door of the room and the chair was delivered.  I was still in shock. It was like little  fairies  were two steps in front of us rolling out the red carpet.  I was ready to take up residence forever
........Stay tuned more updates  on the trip and life to continue soon.......