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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 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.

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