We have just returned from Maryland from Dake's 9 month appointment on April 23.   It was an awesome day because we found out Dake continues to get stronger. He had a test which measures his grip strength and another test for pinching. Here is his scores. The higher the number the greater the strength.


GRIP TEST:
hand             six months /nine months
right hand          6.5             7.9
left hand            4.6             5.4
PINCH TEST:
fingers         six months / nine months
right  fingers     3.0            4.5
left  fingers       1.5            4.0
                                        (this one is most exciting)

In comparison to the average person who does not have Duchenne this strength is very minimal but to us it is like a GOLD MEDAL!

It was an EXCITING....AMAZING day. Thank you God!

Day of Soreness and Rest

Dake is pretty sore from all the attempts of draining his blood. The ladies who help with getting him up and dressed had to be extra careful with him this morning. He was able to go back to bed this morning and that definitely made him happy. After the travels and events rest was truly needed. He seems rested after the extra sleep and seems to be in good spirits despite the soreness.  All is good.

Does Dake Really Have ANY Blood in his Body?

    Early this morning Dake woke up to a group of professionals all with needles.  The cardiologist triedto draw blood on the inside of his wrist but no luctk. So he decided to go ahead and try the femur vein/artery in upper leg.   No luck! The doctor dug but still no luck! Dake just said "Sweet Nibbets!"....Which honestly I could of thought of different words.
     The doctor had Dake drink water most of the day.  Dake said his eyeballs were floating......The cardiologist returned in the afternoon.  He tried first in his arm and hand.  No luck.....moved to his feet and leg....no luck....He decided to return to his femur artery/vein....Dake is not at all thrilled at this decision.  David had to help hold and lift Dake and I was on the other side.  David usually leaves the room on purpose because when anyone in his family has to have blood drawn or taken David usually lands up becoming the patient.  I made him look the other direction.....his face still turned blood red..
.Finally blood has been found and drawn.  SIGH!

First day of Testing @ Johns Hopkins

The flight here was very smooth and we landed to the sight of
SNOW....which is always exciting for us.
  Dake started out with a rough day as the head of IV and several nurses from all departments attempted to get blood from him. They finally made to his foot but still to no avail ...the blood remains in his body. But despite those failed efforts good news was around the corner. His grip strength had improved in October at the three month mark.and today revealed he had a strength increase even more in his grip at this six month mark......Baby STEPS BUT we will take IT! YES!!!! YAY!!!! 
Last time at the first MRI Dake had great difficulty with the task of breathing and holding his breath and the added grills put on his body. At the beginning in July what took 2 1/2 hours should have taken about an hour.  Today he completed his MRI in an hour and he did soooooo awesome with taking the test. We do not have the results yet but he was relieved to get the dreaded test behind him. I asked him what was diffeent this time and he said he just kept reciting the Lord's Prayer over and over again...He said he would forget where he was and start again.
Tomorrow the cardiologist will attempt go into Dake's main artery in his leg to get blood needed.  This is extreme and must be performed by a cardiologist. After consulting with his cardiologist he suggested this is probably the best way not to make him a human pin cushion. So in the morning this will be performed....
Today the actually medicine was adminstered.  and we will see.......

Fly to Baltimore ....EARLY Monday

We will leave Athens early to travel to Baltimore, Johns Hopkins, on Monday morning. Please pray the travel will be comfortable for Dake and with lots of ease for David especially. Dake will be checked for his six months checkup. They will repeat the dreaded MRI (it took two hours last time) and several other test. This is the time in the trial that everyone will definitely be on the actually drug and not a placebo.  (Dake and I believe he is already on the actually drug but that is just our belief at this point).  Praying for awesome results on all his test and encouragement to continue forward with this drug.. Pray some of his daily living skills return with the hope of this drug..

2 Awesome Days......(knock on wood)

Dake has had two wonderful days the last two days/ In the past 48 hours Dake has not had to have a breathing treatment which is the first time since right before Christmas.  Celebration! Yay! Keep praying.