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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.

Wednesday, October 24, 2012

Even Kutless

Even if the healing doesn't come......God is Good.

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Equipment for Handicapped For Sale

 Our sweet son passed into his heavenly home on October 15, 2012

Soon the story of Dake's last few days will be posted for those who have asked for more details. These details are not easily coming so please be patient with us as we process our new reality.
We need to sale a few things to help us move forward. We donated many of Dake's equipment. We donated his bed, shower chair, his older wheelchair, (not new one, we are selling it for 1/3 of the price and will have details.

2002 GMC Savana,
white exterior, tan cloth interior,
dvd player, TV, VHS player, CD player, cassette player, radio
 middle bench seat folds flat to make a bed,
van holds wheelchair and 6 to seven additional passengers,
 braun lift in rear., captains chair for passenger next to wheelchair passenger,
 front and rear a/c.,
 mileage is 169500 approximately.,
 v 6 engine.
Tires in good confition, oil changed regularly.
call  256-503-3494 or 256-777-4101 or email
For Sale $5000.00
(A used Braun lift is approximate $3000.00 and a new lift would cost approximately $6000.00 and then the cost of installation is on top of that price,)

Permobil Wheelchair
 Brand new Permobil wheelchair with all the things need for Duchenne Muscular Dystrophy or others with multiple special needs. We traveled to Duke University, in NC, in 1996 and talked and worked with a physical therapist whom specialized in Duchenne Muscular Dystrophy.
The chair carried him beautiful for all the needs upto his end.
    Dake’s chair has only been used for six months.
 Top of the line, computerized, has every feature ever needed.
It has a chair elevator which allows the passengered to raise up and have a conversation with someone standing. It helps the passenger to reach unreachable items above his or her head.It help the user adjust to fit under any table in a restaurant with no problem and etc.
  It cost us 30,000.00, we are selling for $10,000.00
.We would love to give it to someone in need but it is not even finished being paid by us on our end.
The chair is a beautiful red.
If pics or more  info is need... please do not hesitate to call or email.

Tuesday, July 31, 2012

Home Ever Loving Sweet Home

Home Ever Loving Sweet Home

Home is so nice and glad to be here.

I have to step back just for a moment to share this story.

We have been traveling back and forth to Baltimore for over a year now.  We travel with the same airlines because they fly out of Huntsville and they are the least expensive.  The saying you get what you pay for is so true even in airfare.

The crews of the past flights were always impatient and let us know they were ready to go when the aircraft landed.   We are always the last ones to depart the plane because it is easier to get Dake off the plane when all the others are gone. (Plus we take more time to him get off, so no one has to wait.) The crew, (pilots, stewards and stewardess), has to remain with the plane until everyone is off the plane including us.

In our experience, most of the time it takes a while for the airport crew on the ground to bring an aisle chair for Dake to exit the plan.

Then, usually we have another wait for the ground crew to get his wheelchair to the door of the airplane so we can transfer him from the aisle chair to his wheelchair.  The crew in the past has added to our frustration because they are ready to get to their destination and we are “holding” them up.

One time a captain was so ugly about having to wait and made a comment loud enough for us to hear.  David let him know he did not appreciate his comment. A few words were exchanged and the captain threatened to have David put in jail.  (This was not a pleasant time.)

But on our last trip home we are not sure if we were all hallucinating from exhaustion or maybe just delirious from the calamity of events from Baltimore.

As we landed we stayed in our seat and waited as we normally do but the next few minutes were not the usual.

As we sat comfortably chatting as the last passenger exited the plane. The smiling friendly steward came down the aisle and pulled our luggage from above in storage. He stated that we would need to just take care of ourselves and they would get our luggage and carry it off the plane to where we would meet the wheelchair.  I was speechless at first and replied,” Oh it is ok we can get it.”   He insisted to go through with his plan. “Whoa” that was nice and never ever happened before.

Then the ground crew brought the aisle chair and rolled it carefully down to our assigned seats. We are about midway back. It will take two and sometimes three people to get Dake situated and secured in this tiny thin chair. (Dake has no core strength or the strength to pull his arms in while rolling down the close tight aisle so someone has to hold him so his arms do not flop and get caught on the seats as we exited.)

It was late at night and only one ground crew came to help with Dake. (Usually two crew members come). David does all the lifting and gets him to the aisle seat and the ground crew guy was behind the chair getting the straps straighten so we could get him secured. The Captain of the plane come to us and gets down on the floor on his knees and gingerly straps Dake in his chair and then he backs out and holds Dake’s arms as they exit the plane.  I almost cried at everyone’s kindness. This just never ever has happened to us before. I am in shock.

Then the whole crew waits with us as we wait for his chair to be retrieved from beneath.  I am not sure what I looked like but when there was some trouble with the chair one of the stewardesses came over and hugged me.  Nothing was said just a kind hug. Finally the chair arrived and we all left together and as we separated I profusely thanked them but I could not adequately get my words out. They waved and acted like it was no big deal. Wow.

The kindness of those strangers touched us and we will never forget them.


A little kindness goes a long way but an abundance of kindness goes to the HEART!


Tuesday, July 24, 2012

Going Home Ever Sweet Home

The Cardiac MRI was run today on Dake but they were not able to get all the details they needed. 
 Dake was worn out from the manual chair and not being in his own bed.
The doctor told us they were able to get the core of the information needed for the research. Woohoo.  Home here we come.
 The test was run at 7:30 this morning but we would not be able to fly out until 8:25 tonight. This was  the earliest flight we could get. We were still hoping the new joystick might arrive today so we would not have to push the 357lb wheelchair thru the airport.  Especially since the wheelchair was not wanting to move easily.

We were also told this morning we may not get reinbursied for our hotel, flight, food and wheelchair that we had to purchase while waiting on the piece of equipment that never did get repaired.
This went over about like a lead balloon.
They had reassured us this was not going to be a problem before we agreed to even stayed.
The main doctor who wrote the research had given his word on the phone that it would be taken care of if we stayed.
 Needless to say we were not happy.
 We will hopefully find out for sure soon.

Dake, Lyndsey, Gracey and I went to see Brave.   The movie theater is next to our hotel.  David was waiting in the lobby
for the UPS man to walk thru with the new joystick that we all had anticipated on.
At 2:37 the UPS man came thru carrying several packages. In those packages was
 the well awaited joystick. HOORAY!
David and the very nice bellhop worked and worked on the chair until finally the familar click sounded and the chair could move.
A special thank you to Mike Provines with AAA Home Health was our hero.  If you ever need wheelchairs or other home health needs Mike is your man....we highly recommend him. He is with AAA Home Health out of Huntsville.
You would think if you are at Johns Hopkins Hospital, you would not have a need to call Alabama for help.

As we are loading up the van provided to take us to the airport a mother with a son in a wheelchair, about 14 years old,  was pushing and tugging his electric chair thru the doors of the same hotel.  I totally recognized the frustration.  We were getting our luggage out of baggage claim at the hotel so we did not have to lug our luggage around all day.
The bell hop who help David was helping this family as well. They were speaking Spanish.  I went over to ask if they needed help in English. The young man said his back wheels on his chair( that was just like Dake's )were not balanced. He would turn on the joystick and only one wheel would make contact with the floor and the other wheel would just spin. He was traveling with two women. One was his mother and maybe an aunt.
When it looked like it was not a quick fix I gave them the wheelchair we had purchased to help them until they could figure their problem out on his chair.
The were very appreciative. I explained it had saved us during a rough time and we hope it would help them.

We are currently at the airport waiting on the time for our flight.....


Monday, July 23, 2012

Still waiting and Lyndsey's birthday

            Today is Lyndsey’s birthday (27) and we are still waiting on the cardiac MRI equipment to be fixed. It has been a bummer kinda of day waiting and hoping we could get called with good news. They only calls have been “not yet” or “can’t get it fixed” .

 The new used joystick is on it’s way and should be here around 2 ish toomorrow. Pray this works.  Getting the 357 lb chair to the airport will be a major challenge. We currently have Dake in a chair we bought at a Rite Aid drug store for $220.00. Dake’s poor body is having a hard time adjusting from a $36,000.00 wheelchair to a $220.00 wheelchair. He is sore and has no control so his spirits are low. (At least we are thankful it is only temporary.)

The last call was from the research coordinator saying they have found another place to do the cardiac MRI at 7:30 in the morning. Woo Hoo….at this point we would go at 3:00 in the morning if need be.

 The only flight we can take is at 8:25 pm tomorrow night. So we will be here a little longer but home is at least in sight.

We all need Snow White and the Seven Dwarves  t-shirts  labeled “Grumpy”. Attitude adjustments needed.

Sunday, July 22, 2012

Wheelchair Under the Weather

We woke up to Dake's chair not working.  We can not get the joystick to work. Maybe the moisture from all the rain?  Maybe just completely worn out.  Phillip and David started disassembling the joystick and now parts are laid out on the table like a surgeon performing and intricate surgery. Lyndsey and I have  researched the Baltimore area wheelchair repair places and a place tor rent or purchase a manual chair for temporary use. We can not get his chair to go completely into neutral.
 Lyndsey found a drug store with a manual chair several miles away. (after calling 17 places). She, Gracey and David are on that adventure currently riding and switching public buses until they find the destination. They called and are on their way back but need us to look a couple of connection points.  We had to purchase a portable temporary wheelchair.  Poor David had to lug it all the way back in a box on the public transportation. 
They  returned now and we have to assemble the new chair. We had to borrow tools from the hotel maintenance. We got him set up and we went to eat breakfast finally at 1:00 in the afternoon.

I keep repeating the follow post to myself over and over again.
                       "God will not give you more than   
     you can take, He may make you bend but you  
                              won't brake........"
                     Group One Crew, HE SAID

I called several repair places and called emergency numbers. I had one man return our call only not to care.
I called our local repair guy, Mike Provines with AAA Home Health and ask if he could over night us a joystick.  We sent him pictures and he is going to do his best to help us out. Thank you, Mike!
If this doesn't work we will have to ship the wheelchair back I guess?
Dake is not comfortable which cause more stress on everyone.
Please Pray for US ALL.
Phillip is flying back to Alabama tonight so he can get back to work tomorrow.

Friday, July 20, 2012

The Day of Test and NOT

Testing @ Johns Hopkins @ One Year.

Our day started with Dake doing ultra-sound of the heart’s artery in the arm.  This test was not too bad on the pain scale. He has to wear a blood pressure cuff inflated on his arm during this procedure. It is on his arm for 10 minutes. So dumbness (lol, this is obviously a slight typo but Phillip, who is still laughing, insisted I not change it to numbness as it should be) sets in but no pain.

He went next to get his weight and height. The ordinary type doctor visits.

He has lost 4 pounds since his 9 month visit.


He has lost 10 pounds in a year. Having a sister with culinary skills has paid off. YIPPEE!

For a non- ambulatory person in a wheelchair full time losing 10 lbs. is awesome!!!

He then moves to another room for an EKG. This went smoothly and easy.

We go to yet another room for the grip and pinch tests.  This is the test he had been anxious to see if he has improved as much as he had at 9 months. Every 3 months since the beginning he has gradually gotten improved results.

 (The natural progression of Duchenne MD boys is to lose muscle strength and NEVER be able to regain it. (When it is gone, it is gone….)

At 9 months Dake got his best score ever. So today we were all anticipating great news.

They test is done on each side.

Today the results were disappointing. Unfortunately his grip strength and pinch strength has declined from the 9 month test.

Pinch test
Pinch test
Grasp test
Grasp test
9 mos.
12 mos.
12 mos.
Left hand
Left hand
Left  hand
Left hand
Right hand
Right hand
Right hand
Right hand

His pulmonary function showed some improvement but the Doctor believes this could be due to an added non-invasive ventilator our pulmonologist added at night time about a month ago.

 6 months
12 months
.73 liters of exhalation
.92 liters of exhalation

We left this building and headed across the street for Dake to get the Cardiac MRI.  It is 1:00 in the afternoon and Dake has not eaten.  He could not eat because of the blood work but the doctor’s schedule ran over and he only had 10 minutes to eat and get across the street. We should have had an hour and a half.  We stuffed half a chocolate chip muffin down him and a sip or two of o.j. and off we went. 

The MRI crew needed to get a contrast i.v. started for contrast for the cardiac MRI. They worked and searched and could never find a vein. Finally they said it will not affect the test results and chose not to do one. Woo Hoo!

 They just made Dake’s day.


Phillip was the chosen one by Dake to stay with him during the whole process. I stood outside the door until time came until the door had to be closed. The prep time was a total of an hour and twenty minutes.

At this point, you just wanna get it over with.

They lay Dake on his back and place these “grills” on his chest until they have to squeeze him into the MRI tube. They were literally pushing him in.

This went on for approximately 30 more minutes until finally it was “take-off” time!

The door closed and I walked around the corner to sit with the rest of the family. The estimated time of test was an hour and half.

10 minutes has gone by…

I see one of the three MRI technician go by, then another one, (that’s two), and then the third. I thought who is running “this show” if they all went out to the room?

Two more minutes go by and the door opens. Dake has been pulled out once again from the tube.

They think the bed that slides in and out of the tube is not functioning.

10, 20, 30 minutes pass and Dake still has the mountain of “grills” on his chest. David goes up to the door and demands they remove them at least until they figure out what is wrong.

They obey.

Soon Phillip and Dake have been set free of the room of forces. Another hour goes by and still they do not know the source of the problem.  

The research coordinator said they do not know for sure what is wrong but they would figure it out. She explained we must have this test done. We could either leave and go back to Alabama but we would have to return to do the test. It had to be done for the research or the result would not be accurate. Or we can stay over the weekend and hope they have it fixed by Monday at noonish.

Travel is such a challenge we chose to stay thru the weekend and hope the repair will occur as soon as possible.

So to wrap up the day. A bit of disappointing news on his results and definitely not what we had wished. Frustrated on the delay of the last test but know we have to have it done.

Staying thru the weekend and going to live it up and enjoy the sights….

Plan to go to D.C.

while we are stuck waiting on the repairs.

Big challenges lie ahead because we have no transportation.

No fear Phillip and Lyndsey are on a mission to figure out the public transportation. They will have it mapped out in no time.

So for tomorrow….nothing but Fun!

Please continue to pray. Thanks.

Thursday, July 19, 2012

Arrived in Baltimore

        We arrived safely in Baltimore this morning around 9 a.m. central time. I knew it would be hot in Houston when we visited, and I knew it was hot in Alabama but I never thought Baltimore could be as hot. Most of the time we have spent here has been during the cold season.  It was 104 degrees yesterday.  It is exhausting.
We got out a little this afternoon but returned early because of the heat. We were all drained. Dake fell asleep and rested a couple of hours. Trying to keep him hydrated is not easy in this heat. He has to hydrate intensely prior to having blood drawn because of the difficulty he has had in the past. We decided to order in for supper and relax this evening getting ready for tomorrow's testing. We are watching, The Three Musketeers with the air conditioner turned to very (icicle) cold.
 (Yes, I know we are spoiled...ahhhhh!)

Tuesday, July 17, 2012


Dake had an appointment with the ONE pulmonologist we found in the area who had at least seen one muscular dystrophy patient. The office info us the doctor was not necessarily a Duchenne patient but at least muscular dystrophy.  So it was worth a try to see if he will work with us.
Dake and I meet Lyndsey and Brittany at Alabama A & M before his appointment. Lyndsey is looking at a couple of masters programs there.  She was like a child in a candy store.  It is a joy as a parent to see your child have a passion for something.  To know they have a desire do to something so strong and productive.
The professors were impressed with her credentials.  (Of course, my thought as her mom was if you are impressed with what is on paper wait until you get to know her!!!)

She was overflowing so much with passion she was offered a job before she had even committed to enroll.

She has many decisions to make ahead of her for her future.  But what a wonderful place to be, having choices is a blessing.

Dake and I left earlier so he could eat before his appointment.

We arrived at the new pulmonologist office an hour early.  I figured out I could get started on the mountain of paperwork I did not receive in the mail. We went into the lobby and found the location of his office. He was located close to the empty information desk in the lobby. The door had his name and the other doctor he shares the office with was also on the door.  We tried to open the door but the door was locked.  This was early afternoon time so I thought they must be at lunch.  The info desk was empty and so I thought well everyone must be at lunch.  Neighboring offices were busy with people coming in and out but I figured they had a different policy.   Five minutes till the appointment time the info desk attendant returned and informed us that the doctor had moved down the street. Really?... Seriously why not just put a sign up people!!!!  Better yet take down the doctor’s name off the door!

Extremely frustrated we rushed to the car as fast as we could with a wheelchair, waited for the one speed folding ramp to unfold, lower, wait for Dake to adjust his chair so he would bump his head, raise the ramp and wait for him to carefully drive in the van so he doesn’t give himself a scalp job, close both doors and now for me to jump in.

We arrived at the new office and repeated the above process in reverse and enter the waiting room drenched with sweat.  We explained to the receptionist our challenges.  She replied, Yeah, we moved last October.   This was our first time here. A sign would have been nice.  And the internet contact info needs a little update too. She wasn’t to compassion about our dilemma. We received the mountain of paper work and began filling them out. I was thinking, well, I guess we are the only ones with having trouble finding his new office until another man came in with a similar story.  (She did not seem to bothered about him either.)

Finally, after witnessing some waiting room drama with other patients we went back to see the doctor.

(Not getting a good feeling at this point but we will see.)

The doctor came in and was knowledgeable about Duchenne . He seems to be willing to work with us with the pulmonology issues. The thing that bothered me most was he was very negative about telling us there is no cure and he was limited in what he could do and most boys don’t live very long. (Of course we know all about Duchenne’s  and the negative sides . Dake could probably teach him a thing or two. )  I told him,  “I just wanted to know if you are willing to work with us….I KNOW you are not God. “

He agreed and that was that. He wants to do some testing after our Baltimore trip.

I just don’t want to be bombard with the negatives of the disease when our lives currently is positive with the disease. We all know this can change in a minute but let us enjoy the good while we can.  It helps anybody to say encouraging words to them.

Dake said maybe he thought we didn’t know. I said,  “Surely he did you have out lived all the ones you have known. They were almost all younger than you.  He had to know we knew the doom and gloom side because you are eight years over what the doctor’s said you would live!”

Our former pulmonologist who moved to Arizona was so encouraging and made Dake want to work at stay healthy.   I really miss him.  I think maybe I could have used a little encouragement from doctor too.

But we at least have one familiar with muscular dystrophy and we are going to focus on that!!!!

Monday, July 16, 2012

"God will not give you more than you can take,
He may make you bend but you won't brake........"
Group One Crew, HE SAID

Saturday, July 14, 2012


Nick and Brittany are here now visiting. They are Dake, Lyndsey and Gracey’s first cousins.   Dake always enjoys family visiting. It seems to lift his spirits and seems to motivate him too. Right now all of them are in the kitchen plus Phillip and a friend of Gracey’s, Chesney cooking supper. The chatter and laughter is joy to my heart.

One Year at Johns Hopkins for Dake’s Heart Research

 We are coming up on the one year mark of Dake’s research at Johns Hopkins in Baltimore, Maryland.  The whole family plus Phillip is planning on making the trip. We want to be together as we wait for his results and celebrate (hopefully) together.  He has been working out in the swimming pool hoping to inflate his results.  We plan on putting Dake in his old chair because of the damage done in the past.  He will have a hard time adjusting back to it but it is best considering our luck with airlines and wheelchairs.

Lyndsey will be having a birthday the following Monday so she is going to pick a place in Baltimore to celebrate her special day.  It is so fun having a certified chef in the family.

Thursday, July 12, 2012

A VERY Stressful Day for Dake

A VERY Stressful Day for Dake

Talking about stress, Dake had a major stress moment on Tuesday (July 10).  The lady (an angel in my opinion) who comes and helps us out with the house and Dake was at our house.

 Dake has a station set up for him in a small room off the kitchen. This is next to his bedroom and kinda gives him his own personal space yet still in the house.   My dad custom made him a table (desk) to house his computer, television and a telephone. The garage is off this room and he will go outside often and enjoy the sun.  This is the way he goes to get to the front of our house. We leave the door slightly cracked so he can come in when he wants to get out of the heat. My mom and dad live across the street kinda caddy cornered from our driveway. Our mailboxes are on mom and dad’s side of the road. I tell you all of this info to continue with the story.

Our living room is in the front of the house away from Dake’s area.  Lyndsey and I were in the living room on this day during this time.

 Dake had had his breakfast and retrieve to do computer stuff or watch a movie.  This is his morning routine unless he is a little tired and he will go outside in the sun and maybe nap some….(Lyndsey calls Dake a cat  because he migrates to a warm sunny place to nap.)` The lady finished and came thru the living room and said, “Bye” then left.

Lyndsey and I were busy doing computer work in the living room and Dake was in his area watching a movie are working on something.  Usually every 30 minutes or so, Dake will come visit us in the living room when he takes a break or if he needs something.   This morning about 30 minutes had passed since the lady had exited out the front door.  I thought to myself, ‘Dake must have found something interesting this morning because he hasn’t been in to see us for a while.’  Another 15 minutes or so go by Dake and my mom comes from the back of the house  into the living room.  Dake is drenched in sweat. He said in a panic, “Didn’t you hear me calling?”

 Lyndsey and I are totally confused.

Why was my mom with him? Why was he covered in sweat if he was watching a movie? Why did I not hear him if he was in his computer area?

I replied,” No, Dake, why?” I am still very confused.

Dake said the lady let him out the garage before she left through the living room.   She then came into the living room and said, “Bye”, but did not say anything about Dake going outside.

I just assumed he was in his computer room.

Dake went into the garage and fell asleep. He got sweaty while sleeping and his had slipped off the joystick and arm rest.  His finger must have turned his chair electricity off which is near his joystick.  He woke up but he could not get his arm back up on his arm rest.  He screamed and yelled for Lyndsey and I but we never heard him.  He was in the garage about 30 minutes yelling for us.  He could not move or get anyone of us to hear him.  Luckily my mom went out to get her mail and thought she heard Dake’s voice.  She thought at first he was in the backyard calling for us.  Dake said he was at the point of saying ugly words.  (He apologized to his grandmother if she had heard anything.)  She found him in the garage and brought him inside.  I felt so bad. How horrible!  I did not even hear him.  Neither one of us did. If I had known he was outside I would have had my ears in high radar mode.  I usually check on him frequently when he goes out these days because of the heat. 

Ok….I deserve the “Bad Mother’s Award” for this one.  I do.  I do.  Just go ahead and say it.

He got well hydrated and was fine. Thank goodness.

 Thank God my mom loves to get her mail and has good hearing.

Dake was in an awesome mood the rest of the day.

 I told Lyndsey maybe 30 minutes of gut curdling screaming was a good stress reliever we should all try….

(I MUST make sure and tell my mom our plans if we choose this method of stress relief because she might have a little added stress going to the mailbox!)

Wednesday, July 11, 2012

Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is desserts!  This statement helps me sometimes….just knowing it makes me happy and feel better.   I get tickled when the doctor and or anybody who does not know us ask, “do you have much stress in your life?”

  Ohm, maybe a little……but doesn’t everybody?

Ok.  Everybody does have stress BUT what is the best way to channel it or relieve it. I guess I feel like stress is like air in a balloon.  The more air equals more stress.  The balloon grows and grows until it of course burst.  I feel like our family, as a whole, is so good of riding out the storms but we let the air in balloon little by little, day by day until the balloon has reached its maximum capacity and then everyone blows up.

Then, we have a “family” meeting and everyone gets it out.

  We are exhausted from all the “air” that has built up”….

We talked about doing it like once every couple of weeks or so but honestly we are afraid it would be a total world of “overload” all the time. Frankly we don’t have enough emotion energy.

Having to do 95%, (day and night), of another person’s movements is not only hard on the individual unable to complete the movement but the individual(s) who is helping. ….in other words this can equal stress for everyone even on the best of days.

We are trying to work on stress as a whole.  .  Dake is stretching and working out in the pool a couple times a week.   He has been working really hard.  (Water is the best place for a Duchenne Muscular Dystrophy boy to exercise. The water takes the weight off the muscles making it possible for lots of boys to have the sensation of walking long after they are in a wheelchair. Dake swam well as a child.  It was the only physical exercise he could beat his 15 month old younger sister at when they were younger.)  

Another fun fact about Duchenne Muscular Dystrophy is they all float.

This is nice when they can turn over by their selves but not good if they can’t and land up face down.  We have to weigh Dakes legs down in the pool so he can experience a little walking.  We always tease him and say we are with the mafia and this is our version of concrete blocks.

We have all been exercising regularly and eating right for a while now.

 Which is always good….not always fun but good.

Our individual plan for stress is……

 Lyndsey gardens and cooks. Gracey has gymnastics.

Dake retrieves and gets on a computer or goes outside by himself.   David retrieves and starts cleaning angrily. He has football games in the fall.  (I, personally, am not always sure football is a stress reliever….it seem pretty stressful as serious as he takes it.)

I paint.

We all have our outlest but it seems we need more sometimes.

Anyone have any suggestion please send me your comments.