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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.

Thursday, September 29, 2011

Why so sleepy?

    Wednesday,at 6:50 a..m.,  Dake had great difficulty waking up. His blood pressure was extremely low. (he usually has unusual low blood pressure in the mornings....Wednesday it was even lower for his normal).
    I had Lyndsey take Gracey to school just in case while he was getting a bath he decided to pass out.(which has happened before)
     I love taking Gracey to school for her to have some normalcy (whatever that is) for her but for me too. Dake had his bath but he acted almost like he was drugged. I double checked his meds and all of it was fine.  In fact I had been trying to cut back on one of his "sleep" pills to see if getting up in the mornings would be alittle easier.  He really did not want to get up but I insisted hoping his blood pressure would rise some. He did get up with the home health ladies and went on to get his bath. He did not shave which is highly usual for him....he is kinda OCD with his shaving.  He wanted to go back to bed which I knew he needed to keep going but I really felt for him because it was obvious he was sleepy.
 Of course it was one of those days we had a list and a half of things to be checked off  for our daily routine...and this day was a day of leaving the house to get it accomplished.  (This is an area I have a hard time with....I like to get on the 'ball" and get things done.  Living with Dake has taught me things don't always goes as planned.... And more than likely don't have expectations because it will not go like you expect more times than not.)  ( this where I tell myself to breath....just breath...)  Just making a quick run to the store..... or whatever fits in the blank does not exsist at our house.
    I told him he could rest until 9:30 to 9:45 then I really had to get some of things done that were on a time line. He did ask for five more minutes which he always does....(but can't complain I am a "hit the snooze button" three times kinda gal).  Lyndsey and I got him up and got him refreshed.  As we drove around town doing the routine errrands he wanted to stay in the van so he could sleep. Each time we stopped and returned to the van I would wake him up and he would immediately go back to sleep.I even sincerely told him I would sacrifice my feelings and slap him if it would help. I did manage to get a smile before he knodded off again.
   At 12  o'clock he had his Spanish class with my mom. I was getting concerned he was not going to stay awake to go....he was having great difficulty just keeping his eyes open.  I kept calling his name as I was driving....I know it drove him crazy but I couldn't get him to wake up good.  Class time came and I told my mom about his sleepiness and told her to call if he could not make it.  He made it thru his class without calling us...He said he fought it at the beginning but finally seemed to wake up toward the middle.
Today, the sleepiness was not there.....wel,l at least not excessively....

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