Total Pageviews

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, October 13, 2011

Fender Bender....AND....and....

We started our journey to Johns Hopkins today.  We flew out early  and landed in Baltimore to discover the airlines managed to crack and chip the fiberglass body of Dake's wheelchair base. We brought it to the clerks attention and she said we had to go to baggage claim and file a claim at the baggage office. I knew we were on a limit time schedule but also knew it had to be filed immediately if we had hope of getting it fixed. We were able to get it filed  fairly fast and we were told we would have to wait for the central office to call. (This code for it might get looked at but it might take a year.)

We had a little panic moment with the shuttle when the man told us they canceled the van for a handicap rider.  We said no we made a reservation days prior to flying....He rechecked and found he had overlooked our reservation.  Sigh! Whew! and all those relief sounds one makes.

We made our appointment and the doctor wanted Dake's weight. They have this special table that we lie Dake on and it weighs him lying down.  Phillip put Dake on the table and the it registered Dake had a 22 lb weight deficit. Phillip and I looked at each other and we simultaneously looked at Dake and all laughed. The nurse insisted the reading was right.  Phillip and I, who lifts Dake regularly, both said, "Uhhh...NO Way!"  After weighing him again on the same scale and got the same reading we insisted it had to be wrong. Finally they took him to another scale and the result was he had lost 4.5 lbs....which sounded more like it.  Dake said he liked the first result better but I was very proud of him with his 4.5 loss. 
   The doctors continued their evaluation.  At the beginning of this study, 3 months ago all the test were done as a baseline. One test they perform  is a hand grip test. The test is measured on a number scale with the highest number means  more strength involved.  Three months ago Dake's right hand grip test was 4.6 and today his right hand measured 5.8!  His left hand 3 months ago measured 3.8 and today his left hand measured 5.0!  The doctors were so pleased but it did not compare to the joy we all felt.  This is showing a growth in strength after 3 months.  Dake's strength difference is too small for us to see yet in our daily lives with but shows the future has amazing possibilities......We can not even begin to express the first hope we have had in years. Thank you God!
It has truly been an awesome day!!!!!

Wednesday, October 12, 2011

Get On Your Mark.....Get Set....Go!

Tomorrow we get up early to start our whirlwind day. We will fly out of Huntsville at 7 ish in the in Baltimore around 9:45. Catch the shuttle (hoping they marked is to be a handicap van....little paranoid after our last adventure with the shuttle.....we have checked and double checked)and head to Kennedy Krieger Institute part of Johns Hopkins Hospital. Endure the appointment and and answer about a hundred questions on the study questionaire. Try to catch a bite to eat if there is time. If not we will ration our airplane peanuts or pretzels. Then back on the shuttle (different shuttle...this one is courtesy of Johns Hopkins) to the airport...reboard and head home...

Hoping it will be that simple. Phillip has been on the phone literally half the day trying to work out a transaction with the airlines. So at this point because of all the "boo boos" and confusion from Expedia I am hoping we have tickets to get on the plane tomorrow. I am beginning to think we might be allergic to airlines. CRAZY!

Please pray for a safe and prospers travel for us tomorrow. Pray they see some possible improvement for Dake.

Monday, October 10, 2011

Back to Baltimore

This is a busy week for the family. On 13th marks three months for Dake in the Johns Hopkins study. We travel back to Baltimore for a checkup. We are flying in early on the 13th and have our appointment then jumping on the plane and heading back home. It will be a whirlwind but Dake sleeps better in his own bed so this is probably the best set up. Phillip is taking David's place this time. It will help David to be able to stay in work and give him a break. Phillip is so good to help us out. He is such a good friend to Dake and our family. He has wanted to go with him since he started but because of other obligations this is the first time he has been able to work it out.
Then Friday Lyndsey has a culinary function in Atlanta so she and I will head out for that adventure.
Please pray for our group with all the journeys that lie ahead.

Sunday, October 9, 2011

Go Big Orange

Our family and Phillip went to Knoxville this weekend. David's friend from work had given us two tickets to the Tennessee game against Georgia. David and I tailgated with his friends, took in the traditional pre game festivities and then to the game along with 100,000 other fans..
  The kids head to Pigeon Forge to shop and have some fun sounded like the crowds were high in their area too.
Prior to the game I decide to go buy David and myself some orange shirts here in Athens. Living in crimson country I knew I had a challenge ahead of me. after about an hour in Wal-Mart  I found two shirts orange for us to wear. I was relieved to finally just find orange. Halloween was on my side but landed up with plain orange shirts to wear
  When David got home I showed him the matching shirts and his first response was ,"That is not Tennessee Orange!!!!   He thought it looked more like Texas orange. After my challenging hunt and frustrating journey in crimson country, I was not pleased with his response.  I quicklly respond back we would be wearing these beautiful orange shirts or I would be exchanging them for that crimson color.......We wore the orange shirts.
(Even if they were orange with slight bit of red in them.)
We had a great time at the game.  We were packed in like sardines and had beer spilled on us from the three out of place Georgia fans behind us. They were obviously over indulgent in their alcohol endeavors. So I guess the spilled beer on us was our contribution of helping him cut back...Yuck!
When we meet back up with the kids ....they wanted to know just how much fun we had had.

Dake did not sleep well. So we are glad to be back home.