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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.

Saturday, December 17, 2011

Fever Finally Broke

Dake's fever finally broke in the middle of the night last night. After sleeping in today he is beginning to feel much better. Thanks for all the nice thoughts and prayers from everyone.  Hoping he does not over do it today. 

Thursday, December 15, 2011

Update on Dake

We landed up at the doctor's office much against Dake's will. After a talk with his nurse, the doctor said he really wanted him to come in.
The doctor said without doing more extensive test he could not find anything on the surface wrong with him.  His lungs sound good so that was a relief. He gave him an antibiotic and he wants us to pay close attention to his fever. Right now the fever is still around even with ibuprofen.  He said if it does not break to bring him to the ER.
So now we wait.....
He did finally ate some chicken broth and is drinking some Gatorade.
Today certainly went differently than planned.


    We had such a "high" yesterday with our encouraging news from the cardiologist. But not even 24 hours have passed and things have kinda flip flopped. Dake had to have two treatments back to back before bedtime last night. After the last one he seemed comfortable and went on to bed.  David said he slept well until 4:00 (when David left for work).  From 4 o'clock until 6:30 a.m. I was called continually by Dake for readjusting and movement.. He seemed to feel OK just uncomfortable. 
      When the ladies came to help  with Dake's( around 7:15) bath and such I left to pick up some artwork.  Before arriving at my destination,  I got a phone call from one of the ladies telling me Dake was  running a fever and his pulse was high.  I made a U- turn and headed back. I called the doctor (pulmonologist) on the way home. He said if his fever got any higher to go on to the hospital.(worried about possibly turning into pneumonia) ( as I mentioned before the lungs and the heart are latter parts of this disease.)  I returned home and now waiting on the home health nurse to follow up with Dake after the ladies had called.
Dake is now resting and I hoping things will flip flop back soon.  There is nothing predictable about this disease. As we have seen in the last 24 hours things can change fast .Pray!

Wednesday, December 14, 2011

The Results of Today at the Cardiologist in Huntsville

Dake and I returned after a long day at the doctor.  Dake says,"they have waiting rooms to be able to go to another waiting room.".  That about sums it up.
        We went through the test required and waited for the doctor to enter the room.  Dr. Laney came in and said ," Dake, you are holding own and we could possibly say you are alittle better........" Thank you God.WOO HOO! YAY!
   As soon as the doctor left the room Dake said, 'Well, I think I am going to live forever!"
It has been a GOOD day!
 Next hurdle is in January at Johns Hopkins with more intensive and aggressive testing....(Dake is really dreading it.)  Please keep praying.

Returning to the Cardiologist in Huntsville

     Today Dake has his appointment with Dr. Laney (cardiologist) for his regular yearly check up. Last year is when we found had a strong decline in his heart function.  This conclusion kinda caught us off guard because we had no idea the decline wash going on.  Duchenne Muscular Dystrophy will progress and  the heart and the lungs are the last muscles to deteriorate before death. So, as Dake told me as we came out of the cardiologist's office after receiving the discouraging news.."It is, what it is!
    As we enter this day with a prayer and attitude of "It is, what it is!" I hope for a sign the experiment drug is working in our favor.

Monday, December 5, 2011

All This Talk About Prayer

There has been an abundance amount of talk about prayer lately. . Most of what has been said I agree with but I feel a vital important part has been overlooked or ignored.
   Just because a prayer is not answered the way one wishes doesn’t mean a prayer has not been answered. We need to always pray God’s Will- not our own. The best example of this is from Jesus in Matthew 26:39
..Going a little farther, He fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." (NIV)
Jesus fell to the ground and cried to God.  Jesus cried and plead to His Father, If there was any other way for God’s will to be done then take this pain away. God said, “No” to Jesus - but He still answered Jesus’ prayer.
God sometimes says, “no” and sometimes He says, “wait.” This in no way means God hasn’t answered  their prayers.  I believe those who have been told,  “no” by God or “to wait” by God and have managed to keep their faith actually have a different perspective of God  that perhaps is not known among those haven’t been there.
 Maybe that is what meant in
 James 1:2; Consider it pure joy, my brothers, whenever you face trials of many kinds (NIV) and in
James 1:12; Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. (NIV)
  I don’t even pretend to have prayer all figured out. But I do know those who have had God say, “no” or “wait” can be discouraged when prayer is discussed and this important vita l side of prayer is left out. Many times those who have had such an answer are weary and tired and need encouragement. Many times the ‘evils’ of doubt can set in as impatience surfaces. Or the “why God” begins to echo in their heads. Hope could be absent.  Prayer and encouragement is needed.
Matthew 17:20; He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
I don’t think anyone who has been discussing the subject of prayer meant discouragement upon anyone but please consider this side of prayer. 
I rejoice with those who have had their “yes” or the answer they had hoped for in His name.  I praise His name! I rejoice in their happiness.  Never would I want to take away this wonderful joy and hopefulness.
Isaiah 40:31… but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. NIV

Friday, December 2, 2011

Good bye Mr. Hobbs!

      Today my mother, Lyndsey and I attend the funeral for Wayne Hobbs. Wayne was a coach to David in high school football. My high school principal and later became my boss. He was Dake and Lyndsey's high school principal. He was very good to us when Gracey came along and help me make accommodations for her to help me continue working.  He was extremely good to Dake and saw he got what he needed while in school.  He went to bat for me when theschool  superintent and I were butting heads.
      Dake and Lyndsey's senior prom was at the Opryland Hotel.  The kids rode to the prom on charter buses. The buses were not handicap accessible.  So I was going to drive and take Dake and his date in our van. But this meant they were excluded from their friends. Mr. Hobbs arranged for Dake to have a limo and to take him and a few of his friends to follow behind the buses.  It was an awesome memory and  we appreciate all he did for him. 
    At graduation Dake had always work toward walking to get his diploma. But when Dake wasn't able to walk and rolled in to get his diploma Mr. Hobbs hugged him and the crowd gave them a standing ovation that still brings me to tears to think about 8 years later. It was one of those priceless moments.
Our hearts are with his family during this difficult time and pray God wraps his loving arms around them. RIP

Wednesday, November 30, 2011

Thanksgiving pictures

Thanksgiving has come and gone....2011

Our Thanksgiving came and  wonderful family came with it. Most of the family was able to come except for few who were missed dearly.
 . My daughters and nieces and I strategically conquered "Black Friday"! We started at midnight and went on though till late morning on Friday.. We watched the sunrise from' Michaels' parking lot..( awesome) I loved spending mad crazy time with all the girls. Fun!  You must only tackle Black Friday with a team....
Dake's little cousins enjoyed riding around on his foot pedal of his chair. Gracey use to ride all the time but seems to have outgrown it. Dake enjoyed Adelaide and Vivienne bringing back the fun. We played the old favorite games like 'Scrabble' and 'Apples to Apples'.  These are a traditional ritual with our family. We added a new game (at least for us)...'Buzzword' mix. With the movies, conversations, games and eating, Dake held up fairly well with our family of night owls.  After having a few breathing incidents that happened a few days before I was concern he would wear out faster.
      Dake had back to back breathing treatments just days before Thanksgiving. The Tuesday
    before the Thanksgiving Dake had a moment before bedtime he could not catch his breath.   
    We gave him a breathing treatment with his nebulizer and he seemed to be relieved. He wanted   
    to immediately go to bed because he had worked so had to breath well he had tired himself. He
    went on to bed and around 1:00 a.m. David came and got me and said Dake could not breathe. 
    I could not get the medicine in the machine fast enough. Dake's eyes still haunt me. Thank God
    the treatment eased him and he was able to breath. He was ready to go back to bed as soon as   
    he felt better. I must say going back to sleep was harder for David and me,

Wednesday, November 2, 2011


It  has been awhile since my last post. Life has been busy and been doing some soul searching. (Jury is still out on that one.)
      Today I toured where Lyndsey will be teaching at Drake State Tech. College.  She will be in downtown Huntsville in the old Huntsville Times building. Huntsville is redoing several older buildings and restoring them.  Very Urban Chic.  Would love to have a studio down there. I am excited for her.  She is going to do so awesome and her students are in for a treat. (I am a little bias of course). She starts Nov. 7th.  She is so excited.
       I took Lyndsey and Dake out eat at Sam's and Greg's for lunch. We needed to celebrate Lyndsey's new start.  Dake had started to cough a little.  I thought I would get him a Coke to calm it down. He continued to cough and cough.  Once our order came I ordered to go containers so we could get him home and get a breathing treatment going.
      After the treatment he seems better but tired from all the coughing. Hoping this is a short lived incident and not the start of something worse.

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.

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....

Monday, September 26, 2011

Dake's Facebook post today

We often pray for Christ to cure us yet forget God uses own Illness to draw people to him.

As He past by, He saw a man blind from birth. And His disciples asked Him, Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.
-John 9 1-3

 Justin Webster Well said!
  Joseph Griffin I think about conversation between people standing in line waiting for admission to Heaven's Gate. "What did you do with your life?" "I was a Super Bowl champion". What did you do with your life?" "I was used by God to tell others about Christ" Keep drawing 'em Dake. Andy Finchum Missed you in class yesterday, my man!
Wendy Shelton Very well said Dake.

Monday, September 19, 2011


        Lyndsey is back home and she has made it her mission to ”whoop” us in shape. She is showing Dake how he can be more independent in little ways. She told him when he is at a restaurant to have the kitchen cut up his food so we do not have too. She told him it makes him more independent and he does not have to rely on anyone to stop eating to help him. 
Yesterday we went to a local Mexican restaurant and Dake requested a smaller glass so it will be easier for him to drink. The drinks came out and he has an ex large glass like the rest of us.  I suggested he ask for a “to go” cup.  So he gets his “to go” cup and feels good about it. Lyndsey reminds him to ask the waitress to have his chimichanga cut into bite size pieces. So he did. The waitress brings Dake’s his food and it’s a child’s hotdog.  The look on Dake’s face still makes me laugh today. We are all trying to remain calm and nonchalant  but in reality we were about to blow milk out our noses. Lyndsey comes to his rescue and speaks a little Spanish to her and she finally comprehends.  She then returns the correct order and cut up into bite size pieces.
                               David now calls Dake, “Hotdog”.

Wednesday, September 14, 2011


      When you children go off to college or other adventure and return home things are always different,  My oldest daughter returns home after being gone for three years and notices changes in the dynamic of our family. Changes to us that are subtle and gradual and we don't notice anymore.
       For years David and I have been an advocate for Dake.  (Not only with the Muscular Dystrophy but with his very challenge dyslexia, as well.)  Lyndsey was always there, even as small child supporting and cheering for him and the family. She is pretty remarkable, even if she is mine.
       The other day I got on the computer and noticed all these tabs open to different agencies to help with a variety of services.  She told me that her Dad and I needed help and we should utilize any and all services. I said I thought we had and many times the answer is NO.  She said that is not good enough. (She has red headed spirit!)
 I never thought we needed an advocate.

Tuesday, September 13, 2011

Class in Session

Dake and his grandmother, Galou, (my mom), started conversational Spanish on Tuesday. Today Galou came over so they could do their homework.....Dake is nervous he is not already speaking the language when he enters the class. Both of them seem to be having a good time....

Dake returns to his local Dr. tomorrow for his two month check up. Plans are set up for him to fly back to Baltimore for his three month check up.

Lyndsey bought 20 + plus chickens to prepare for the Wednesday night meal at church. I am sweating at the thought of her having to fix for 200 people. But she is totally fine. I would be sweating if I were fixing for 2 people, (those two people would be sweating too if they knew I was feeding them) .   So I guess you figured out she did not get her culinary influence from me.

Thursday, September 8, 2011

Planning Ahead

Just booked the next flight to Baltimore which will mark the three month mark of when Dake started the study. This next trip will be in October.  We will only have to be at Johns Hopkins for about an hour so we are going to fly up and return the same day. I hope this does not completely exhaust him. Phillip is think about going with us on this trip but it depends if he has a new job that will interfere or not. His help and company will be truly appreciated.
Nothing significant has been seen or felt by Dake so far.
We will continue to pray for what is best for him and God's guidance.
 Of course. I would love that miracle.

Sunday, September 4, 2011


   This morning while getting dressed and ready for church Phillip was helping us by finishing with Dake. So to help him  I ran upstairs to iron Phillip's shirt for him. I turned the iron on so it would heat up and did a few finishing touches.  We were hurry because we were running a little behind. (as usual). I quickly ironed Phillip's shirt grabbed it and ran downstairs as announcing we need to be in the car with the motor running. Phillip puts on his shirt and out the door we go. 
We get to church with minutes and down to seconds to spare.  We got Dake out of the back of the van and get him straightened and comfortable. (always have to allow time for straightening and time to get him is kinda a ritual now.) We finally make it in the building to find an end seat....up front, of course but we make it before the first note of the first song is sung! Yay! (miracle accomplished! WooHoo!)  We all get positioned in our seats and sigh as if we catch our breath.   
     As the first song began, I glanced to see if everyone was in their place and set. Then I noticed Phillip's shirt.  I got tickled to myself but at this point what could I do.  I had ironed his shirt like I iron Dake's shirt.  I am about to admit the short cuts I take in my everyday life here.  I only iron the front parts of Dake's shirts because of his chair no one ever sees anymore of the shirt .  So out of habit I had ironed Phillip's shirt the same way.  
Poor guy and he was helping me and I THOUGHT I was helping him...
................................................................He did forgave me.....

Thursday, September 1, 2011

If you could clone me......

  David returned to the doctor today and the doctor changed a medication. The doctor also received his blood work back and noticed he has a deficiency in a vitamin and he is now taking a supplement.  So we wait for the new medication and the supplement to take affect and hopefully he will be a new man. (Just the same great guy is just fine with me)

     Dake asked me the other day along with Phillip, Lyndsey,and Gracey, "If you could clone me and one of me was in the chair and one of me was walking which son would you want to be your son."  I replied, "You would not be who you are if you were not in the chair. So if you looked identical on the outside and one was walking and one was in a would be impossible for you to be identical on the inside."  He agreed...I said."You are not your chair but being in a chair has molded you to who you are today.  I like him,  he is a pretty awesome guy but I would love for you to be walking....more than anything. So if you could be the christian man you are out of the chair like you are in the chair I would pick for you to walk..........."  I asked him the same question too.  He said he did not know if he would be as faithful out of the chair........
We continued a great discussion with what would be different if he did not have the chair as part of his life but was a healthy walking young man.  We talked about where he thought he would be in life and what he would be doing as a profession.  It was a good conversation and everyone had an opinion of how his life would have been if.........  It was good but bitter sweet.

God has blessed me with amazing children and I am thankful for them all.

Tuesday, August 30, 2011

Compliments ONLY!

    Great news, Pam gets to return home from hospital and for mending along with girls. Hoping they will be as good as new soon....Thank you God.  The Schrimshers and Besheres have had way too many bumps this year with the tornado and this wreck. We are continuing to pray for their full recovery. 
 When I was five I had a wreck with my grandfather who lived in Memphis. (We lived in Columbia, Tn.) I remember he was so scared when he saw me because I was covered in blood. He got to ride in the ambulance with me and he told the ambulance driver not to put on the siren because he thought it would scare me.  It took a long time to feel comfortable to ride in a car again.  My head got hit hard and I had a bloody nose. I had a concussion and they were told to not let me sleep and bring me back to the hospital if I had any vomiting with blood. I  remember having a bad headache and did not want to eat but my grandmother gave me HI-C.  It tasted so good. Later I started vomiting and my grandparents thought I had thrown up blood but it was just the HI-C.  
  David's blood pressure is still elevated but better than it was. Within minutes of arriving home he was pulled over and given two  traffic tickets.  One for failing to use his turn signal and the other for light not working properly....This is not the best thing for someone with blood pressure issues. We could truly say lousy timing...
The doctor's office called and had to postpone David's appt. for Wednesday to Thursday. This is one time I do not want to be patient.
Luckily Phillip is visiting with us this week and he is taking the sleep issue for David right now. Phillip is amazing how he seems to show up in our life when we really need some help. We are not only thankful for his friendship with Dake but with the whole family....He is like family. Thanks Phillip.
Tomorrow Mom (me) has decided we can only say positive and loving things to each other. I noticed on Dake's facebook he had already paid a nice compliment to his red headed sister...  I was so proud of him getting an early start...later I discovered she had written it instead of him. 

Monday, August 29, 2011

Praying for Pam, Sarah Beth, and Kimberly Besheres

We have heard Pam and Sarah Beth and Kimberly have been in a car accident. They have been taken to Huntsville Hospital...Please pray for this precious family.

Please remember David too...he is still struggling with high blood pressure....

Recent update from Bill Perkins:    Update: Kimberly has been released. Sarah Beth bruised collar bone. Pam likely has a small fracture of sternum (seat-belt) still waiting on x-rays of right leg. Doc said "she is okay". Neck collar is off, she can get up if she can/wants to. Praise God!

Sunday, August 28, 2011


Just a quick note to ask for prayers for David and his elevated blood pressure. His bp spiked on Saturday and he having throbbing headaches and bp is still up. Please pray. Will write more later...sorry for the delay in postings.

Sunday, August 21, 2011

Perception from Others

       Have you ever wondered what others think of you?  I think most of us are a little curious at times.
      It is interesting how some people will see someone in a wheelchair and comment as though they are not there or cannot hear them.
    One of my favorites perceptions of Dake was when he had his service dog, "LURCH" (huge great dane and lab mix ) with him and we went into Walmart and the person said to the person beside them  "He must be blind".....OK..... think about it! Would he be driving a powerful machine if he were blind?....He did not have one hand on the ground and one on the joystick.  You have to laugh because surely by the time that person got to the car they realized what they said.  (Personally, I would have loved to see that! ha ha) Surprisingly we heard that comment a couple of times.  We actually do laugh.  It is interesting to people watch.

   The other day Dake, Lyndsey and I went to a restaurant we frequent often.  We ordered our drinks as usual and they brought them.  The nice waiter brought Lyndsey and myself the large glasses as usual but he brought Dake a "kiddie cup" as Dake calls it.  You know the cups with a lid and straw.  I immediately thought how thoughtful the waiter was being sensitive to his needs. Dake on the other hand took it as an insult. Lyndsey laughed and teased him trying to make light of it. Then we all started laughing. It really upset him though and I understand what he was saying.
   I understood both views...The waiter thought he was being kind and he was but I undersood Dake being insulted by it. He felt like he was being perceived like a fragile person who could not help himself.
  I knew Dake was feeling better about it today when he was sharing the story with a friend and was laughing about it.
  Laughter is truly the best medicine.

One of my favorite t-shirts Dake had was....."Stare long enough and I might to a trick!"

Thursday, August 18, 2011

Whose Watching Who? or is it Whom???

     Today Dake rolled into the backyard and enjoyed the warm sun.  (aka napped in the sun)  Lyndsey was napping on the couch in the room next to the back door. I decided to spend some time painting and enjoy the time alone in the living room where my easel is temporarily set up. (living room is in the front of the house). Before putting the brush to my canvas I decided to get the mail. The heat hit me in the face as I ran across my yard to my mailbox. My dad was outside working in his yard. (Mom had taken a friend to lunch).I went ahead and got my mail and went over to talked to him about 3 yards away.  I was concerned about the heat and him doing yard work out in it. We talked brief ( a little politics)  and I headed back knowing my brushes were waiting on me. I hurried in, cranked up the music and drifted off to my artistic zone of bliss.  I was keeping an eye on my dad because the heat really concerned me.
      My dad is "Type A" personality. He never leaves a job unfinished.  As a kid, we would work on a project  and  no matter how tired or late it was would always finish.   Not only would we finish but we would clean all the tools we had used before putting them in their assigned places.  (This "type A' gene was not passed on to me unfortunately.)
      I was painting then I stopped and  looked out my window near my easel but did not see my dad.  I walked in another room to get a different view.  I was worried he had passed out from the heat. I was distracted by the interruption of  Dake rolling in .... He was in a panic asking me why I did not hear him. Clueless I said, "What are you talking about? (assuming Lyndsey must have let him in.)  Dake said, "I fell asleep and my arm slid off my armrest and I couldn't get it back up. (He could not get his arm up to the joystick.) I was screaming and yelling for you.  I was stuck and could not move!."
       I apologized calming him down  and glanced in the den where Lyndsey was.....she was sound asleep.  I asked him how he got inside?  He said, "Pops heard me from across the street and he came to help me!"  Then my focus jumped to my dad....Oh yeah! Dad!"
 Oh .... Oh.... Oh...THAT was  where he was!"
I ran from the back to the front to thank him.....(he was in the driveway)
Dake calmed down and Lyndsey said she never heard him.....she was about 3 yards away from him...zzzzzzzzzz......
All is well and everyone is fine......
My easel is still calling me......
 ........ perhaps another "quiet" time.....

A Good Day

    Today, we found out that the nuclear plant David works for is going to be reopened.  He drives to Scottsboro everyday to Bellefonte Nuclear Plant.  This is the plant that will be reopened and built. This is good news for our family and many others. 

Also, Lyndsey was offered a part time job  teaching Hospitality courses at Drake State Technical College in Huntsville. It has the potential of growing into more and she could have the opportunity to teach the overflow of culinary classes in the future. Drake State's culinary program is really growing so the position is a real potential. 
So needless to say we are excited about all the good news today.

Wednesday, August 17, 2011


      Today Dake had his pulmonary visit.  The doctor is very happy and impressed with Dake's pulmonary function from his evaluation today.  He is waiting on the evaluations done at Johns Hopkins so he can compare the records with his but he is very please with what he saw with Dake's lungs today.  And we will celebrate this moment. YAY!

     Gracey's first few days of school has gone well so far. She, for the most part leaves me in the morning smiling and gets back in the car smiling. So far the worst part of her day is the taste of her lunch...This morning I had a flash forward with her attitude. She could not get her hair to her liking and it was not a happy moment.  I finally forced her in the car because of time and she at least came to a satisfaction with her locks before arriving to school. She did give me a sweet smile before hopping out the car. 
       My experience tells me I will have plenty more mornings like this one echoing in my future. We are coming into that dreaded "stage" of adolescence. So we will just better hang on for the ride. This too will pass.

Tuesday, August 16, 2011

Local Doctor's Review

    Dake went to his local doctor to have a one month check up and evaluation. There is little to tell at this point.  He checked out fairly well with a concern with his blood pressure running low. We are to watch it and come back if it does not go up any.  
    Tomorrow we go to the pulmologist and have a check up there.
    This is a rather boring update but I would rather have it like this then a dramatic one. I have had my share of those and will take the mundane boring ones anytime. Check back later for this docs detail.  Hope they are boring too.

Sunday, August 14, 2011

One Month Passed!

  Tomorrow Dake goes to the doctor locally for his first month's check up since he started the research program.  We were able to work with Johns Hopkins to have a few of his check ups done locally so we did not have to fly to Baltimore every month. This will help us so much physically and financially.  I have to remember to take all the paper work and info because Johns Hopkins covers all the charges even here at the local doctor. I tried to call ahead and let them know the situation with billing but that is like speaking a foreign language when I try to explain everything.  So I am going in and try again face to face.....I know I can draw picture if needed.

 The symptoms I want to check out most is his headaches and swelling of hands. Both symptoms are better but need to have them documented. And against Dake's wishes, I will feel better just having him checked out for those things. Dake would rather just skip that part and not mention it.  But sorry Dake...Mom Rules on this one.
He has a pulmonologist appointment on Wednesday. This is going to be a busy week. School, Doctor, Gymnastic, etc.....Whirlwind....Crazy!

Saturday, August 13, 2011

Graduation for Phillip

              Today is a very special day. Dake's best friend is graduating as a mechanical engineer from UAH.  This graduation is extra, extra special. His like family but because he has had extra challenges along the way.  His four years has taken him eight with his challenges and obstacles of life. We are so proud of him and how hard he has pushed and worked this last eight years.
Today we say
to our
 dear friend Phillip!
     He has shown us and others not to let struggles and obstacles hinder you from striving and achieving your dreams and goals. Go Phillip! 
      See you at graduation!

Thursday, August 11, 2011

Fifth Grade

      Tonight was Gracey's fifth grade orientation. I cannot believe my baby is going to fifth grade. The fifth grade is a big year and she will begin by starting to go to a new school. She will have a locker and change classes for the first time. Lots of new and exciting stuff.
    My fifth grade year was one of my worst in my school career. My teacher lost her mother and husband both in that year . Children and grieving do not always mix. 
    Fifth grade was a transitional time for Dake.  It was when he got his first scooter. He always told us after his diagnosis that he would NEVER go to a wheelchair.  As the time started to approach that some intervention of help with walking was needed I knew I needed  to give him permission or reassurance it was OK to go to a wheelchair.  He had echoed the statement he would never have to use a wheelchair so much because he was constantly staying positive. But honestly I think he was trying to protect us by denying  inevitable.
      In the fifth grade the time had dreadfully come. He needed some help walking long distances and  maneuvering in the hallways. He could easily get knocked down if he was bumped by someone in the hall or classroom.  He was not emotionally ready for a full wheelchair and honestly I was not either. (I hated
 the first scooter... but relieved to have it at the same time.) We talked about how cool his new cart was and how fun it would be. He adjusted well and was relieved to have the stress of walking the halls lifted.  Mrs. Tucker was an amazing teacher and she was very adjusting too. Luckily his best friend Phillip was in the same room that year. Phillip was fascinated by the mechanics of it all.  They were planning to "soup" up his ride on a 10 year old level.
 All in all Dake had a very successful happy fifth grade year.

Wednesday, August 10, 2011

Is He Or Is He NOT? That is the Question...

 Some have asked and I have continually asked myself...."Do you think Dake is actually on the drug or just the placebo?"  Aug. 13th will mark a month of starting the medication.  I wish the answer was so astronomically no one had to ask because he would do something like walk or do jumping jacks to answer that question. But unfortunately it does not work that way. 
....But as I slip back to reality....honestly some days I think definitely he is on the drug and others I am certain he is not. He kinda feels the same way. Even Gracey was convinced he had lifted his drink higher than usual the other day....but Dake did not think so.... So I quess we are all on constant watch.  That wonderful word of patience is in play....again...Isaiah 40:31
but they who wait for the LORD
 shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
 they shall walk and not faint.

I love visualizing riding on the wings of eagles in flight.... and Dake being that free.

Monday, August 8, 2011


Dake and his grandmother, GaLou have decided to take a conversational Spanish class through the continuing education at the Athens State location downtown.   Today was the first day. Dake was a little nervous but excited.  He was definitely curious. Mom called early this morning and said the instructor called and they are postponing the class until September. I told him today when he was half asleep but I think he was a little disappointed by the delay. GaLou was afraid the class was going to be canceled when they called today so we are glad it is still on.

     Dake doesn't hear well phonically. He is dyslexic.  Learning if not taught in his style can be quite difficult.   He has never taken Spanish but has traveled twice to Mexico for mission trips. He loved interacting with the people especially the children. (and they loved him.)  And, of course having a little sister from Guatemala the desire is enhanced to learn the language.
Going with his GaLou there is a guarantee they will have FUN!

Sunday, August 7, 2011

Corn, Corn, Corn......

       Today we ran it close to starting time to get to church this morning. We have all known of people who think they "own" their seat or place on a certain pew at church. It is not like that actually with us but it may appear like that to some. We  have to find an end pew or seat to house our family and Dake on then end. We need an end seat next to Dake not only because it is nice to sit together but because he needs assistance with the communion and other things sometimes during church. This morning we were running it close to the wire and I begin to get a little panicky worrying we will not get a place where we can sit next to Dake. Luckily, I think we got the last spot and got settled in before service began. It so nice to have all my kids and Phillip with our family today. I gave me the warm know one of those small things that just make you feel good.

     David's mom called and said the storm had blown one crop of corn down and we need to come as soon as we can to help with getting all this corn up. We left after lunch and headed to Tennessee to shuck and fix the corn. They had done enough already for David's mom and his sister and family. They had given away a bunch and were at the desperate point by the time we arrived. David and Phillip helped shucked the corn and Lyndsey, Gracey and I cut the corn off the cob and bagged it for freezing it. Dake started outside with the shuckers and moved inside and ate some of Mimi's hot fudge cake as he watched us cut corn.....his Aunt Bippy served him up right. (Something is not fair about him eating Mimi's hot fudge cake as we were working.......but no worries we did get ours when we finished.)
    Lyndsey grabbed her knife bag and we headed to Mimi's kitchen.  When we all got in our place Lyndsey shared her knives with us for cutting the corn off the cob. She has a small fortune in her knives.  I cut the corn off the first cob and I was in love. It was like butter sliding down the cob. Pretty awesome. As I was so proud of my progress I looked over and saw Lyndsey did about four cobs to my one. As my corn ego deflated I stopped to watch and WOW.   Watching her was like going to the Japanese Restaurant and watching the chef chop up your dinner for you but in corn form ....if you can visualize what I mean. She was very entertaining.  Dake actually stopped eating a moment to watch too.
    We finally finished up with 25 beautiful quart bags of golden sweet corn. Mimi was pooped and relieved....... well until the next crop comes in.....

Saturday, August 6, 2011

Air Condition is a Nice Thing!

        With Lyndsey's move and the storm Wednesday night my post have been delayed. We lost electricity at midnight on Wednesday and it was finally restored today on Friday around 6:30 p.m.  We were so fortunate during the April tornadoes with only a three hour outage that I couldn't help think of those who went weeks without power.
        There was no rhyme or reason to this power outage.  It was so crazy our next door neighbors had power and two doors down had power but the rest of the street had nothing. I notice one neighbor next to us had an extension cord running across the street to help a neighbor probably with a freezer. Just a tiny glimpse of all the kindness,  like during tornado times, was reflected in that cord crossing my street today....warmed my heart while remembering those tragic times filled with the window of awesome kindness among neighbors.
   Speaking of kindness.....Perry was so kind of turning over his house to us while waiting on the power to return.  Perry was out of town but invited us to use his house. So this afternoon when we finally decide the heat had about done us in  and we decide to go over to his house. It was raining and we had finally gotten Dake in the house. We had to take the portable ramps cause of a few steps. David had just sat down to rest and the my cell phone rang. Mom called to announce the power was back. Yay! Gracey said," If that is all it took for it to come back on we should have come over earlier."
      As I writing. this...two hours after the return of power ...we hear a POP and we are now again without power....uggggggh.
    Here we are sitting in the dark again......sigh  I am literally typing on the remainer of my  battery juice.
     Dake's whole life revolves around electricity....he has not had a shower since Wednesday....we are not sure if it is him we are smelling or spoiled food. He can not tolerate the cold water.   He is on his computer most of the day or watch a movie but the most challenge part is his chair is electric.  So no power + Dake = frustration.
      Tomorrow we had plans to take him to the church to bathe him. The church has showers that might work. It has to have enough room for three atleast. Right now it looks like those plans are currently back on. (That is, if I do not put him out in the rain because he so grumpy.) (His new grumpiness  is because of the new power outage ....he is not a happy camper.)
      Phillip has just arrived to visit with Dake and Lyndsey.  He comes in with a smile and flashlight. His trailer had been damaged by a fallen tree and he had his very last final exam before graduation. So he doesn't care about our conditions as long as he doesn't have to worry about school.. So all is good!
   So playing cards by candlelight is on again tonight.....Time 8:35.........several games of cards have been played........
Time 11:42 p.m.  Heading to Perry's house again.....Good thing Perry is not there or he might not answer this time.    
   Ahhhhhh! back in the nice coolness. Perry's house is cleaner than mine we might just stay.
    This is so crazy. 
    Now the food we were able salvage from the first outage is probably not going to make it for a second round.
    At  least Dake is happier now (he is watching  American Pickers)..... but we just discovered we forgot his :"Ernie"......OOPS!

The second outage last 14 hours.......we are now back home trying to clean up the damages....ugggh.

Friday, July 29, 2011


      Gracey and I made it to Houston safe and sound.  We  are thick in the moving stress but so enjoying our time together.  Lyndsey took her final on Thursday morning.   We were up so late the night before with her finishing work paperwork, me packing and Gracey running all through the apartment with "Basil", Lyndsey's cat.
     Lyndsey has to take a written final and a practical final. She took the written final on Thursday.  She past with amazing flying colors. I am so proud of her. She takes her practical exam in Austin, Texas in August on the 20th.
     I have called regularly to check on Dake.  He is having fun with Eli Griffin coming and visiting him.  He has really enjoyed meeting and getting to know him better.  Thanks Eli for taking the time to spend some time out of your schedule to visit. Will Grice and Eli took him out to eat yesterday.  Will is nice to Dake out to eat every now and then.  It helps a mom who  is out of reach for awhile. Mimi and GaLou have been busy with vegetables Mimi has brought in from her abundant garden. They were doing "Rattlesnake" green be  ans last I heard.
    David is coaching and helping me get through some of the bumpy stuff of moving. So unfortunately he probably has had the worst job of all. Thanks for the help and love you for dealing with the "stressful" me.
    Today is Lyndsey's last day of work. Wow. I hope it is a good farewell for her. I have meet some of her wonderful friends and they are all so sweet to her as she finishes her final days here in Houston. (This does a mom good too.)
  Lyndsey's apartment is adorable. She had it decorated with discount and yard sale specials but you would never know with its dazzling pizazz.  It is too cute.  I have done most of the packing because she is finishing her apprenticeship items and working. I have been amazed how organized and how she has a minimalist approach to life. I know she is my daughter but she is pretty awesome. She definitely has a little of her dad in her and a little of her mom mixed with her own principals added.
     Lyndsey has a pool outside her apartment door.  This pool has been calling Gracey's name since we arrived. I promise her I would take her when we go do the laundry because they are side by side. She is trying to patiently wait until I finish here. So I will finish and take her to the pool and experience the joys (again) of washing clothes at the laundry mat. Lyndsey told me that was going to be her first purchase when she gets a job.

Tuesday, July 26, 2011

Early To Bed....Early To Rise...

    One out of two ain't bad.  
    Tomorrow morning Gracey and I will leave Athens and head to Houston.  We will leave our house about 4:30 a.m. and drive to Nashville with a lay over in Memphis and then on to Houston.  Lyndsey has nice agenda planned  for a girl's long weekend out. ( I hope we have time to pack her.) We are excited to meet some of the people she works with and to see her apartment.  It's bad that we are just now able to see her apartment the same weekend she is moving out of it.
      We have not traveled by van in the last year because Dake was having trouble traveling that far. So to simplify things we would fly Lyndsey here for special times together.  This is why we have not seen her place for the last year.
     I think I have all my ducks in a row for Dake. Mimi and GaLou (grandmothers) have graciously agreed to stay and help with Dake. Neither one nor should they lift Dake so Eli has agreed to be on call for them in case he needs to be lifted after the home health ladies leave in the morning.  David works in Scottboro now and is an hour and a half away. If Dake needed to be lifted for some reason he could not get to him immediately.  Thanks so much Eli this makes leaving so much easier.
    I have his meds separated and labeled for Dake.  He has three doses a day. I got the emergency numbers posted on the cabinet door. All the home health ladies are on ready. Thursday we will be minus one girl but it is taken care of and should not  be a burden on the grandmothers. All his clothes have been washed and dried.  I know am forgetting something but hopefully everything will work out just fine.
     Dake had something happen today that has never had happen before.  His hands were swollen and puffy. Not sure what caused this and he instructed me not to worry.  His grandmothers instructed him he had to behave and not get sick while I was away. It could be the heat, maybe or the new medicine for the study....not sure but will definitely be watching it. He has had a headache the last two days as well. 
         It is nice of him to make me worry right before I leave. haha.
He told me not worry but he did ask me in private later if I thought it was OK. I jokingly said, "You are not to worry." in the same way he told me.
Lyndsey will come home to continue her new job search. We have several in our family who have finished college and started the hunt. Hoping they all find there dream jobs soon.
Must go to bed now!

Sunday, July 24, 2011

Faux pas

            Today, I committed an horrible faux pas. It was truly appalling.  But it happened. It was totally an accident.  It was luckily only noticed by one person...... I think. Thankfully that person was my husband. David and I teach the fifth and sixth grade at church. The curriculum this quarter is science based.  It basically is showing Christianity vs evolution. Today's lesson it was talking about  "organisms" and I totally whole heartedly pronounced it wrong .( just remove the n and i)  David about choked and as soon as I said it out loud I hyperventalated but quickly corrected myself...I believe it was over their heads but YIKES.....sometimes I just need to stay home.  David hasn't let me live it down...

....So sorry if your child is in our class. But no one reacted and my own child did not comment so I am sure it flew over their heads.
Gotta laugh so I don't cry.

Saturday, July 23, 2011


        Saturdays are the best. It is the only day each week we do not have anyone come in our house at 7 am  or before that is not kin to me or personally invited.
      I appreciate the help with Dake during the week and never want to indicate I do not .But Saturdays make me feel like we are just an normal ordinary familly. I can sleep a little later without thinking it is time for someone to enter the house. I guess it its the privacy issue too. Dake's helpers enter as the arrive to our house. I had set it up this way because sometimes in the school mornings I am busy helping Gracey get ready and it interferes with me getting her ready on time if I stop and answer the door each time they arrive.
      Anyway David took Gracey out for their regular Saturday morning "date" to Buger King for breakfast.  David takes this time to have some one on one with Gracey each Saturday and lets me sleep a little late...(.He is so sweet.) (He has done this since she was five years old.)
       This morning soon after they left Dake called to be turned from his bedroom downstairs.  As I came down my stairs to go to Dake's room someone knocked on the front door.  Luckily I had put my clothes on because my nephew and niece had spent the night and I did not want any embarrassment with half clothed bodies....I went to the door and I could barely move (David and I built a new fence yesterday) because I was sore and stiff  (and old). I have the" sleep in" contacts in my eyes and because Dake called I did not stop to put drops in my eyes so I will blinking constantly trying to lubricate my eyes enough to see. So I answer the door and it is two sweet people trying to
"sell  Jesus" to me.  I am sure one look at me with my unbrushed hair, stiff stammering moves and my blinking eyes they probably thought she really looked like a soul who was lost. I explained where I attend church and sent them on they way. (Sure would have loved to hear what they said after they left me....hahha!)     
           Dake called again and after finishing getting him adjusted there was another knock on the door.....oh well, not a relaxing Saturday this time.......

Tuesday, July 19, 2011

"Life is too short to be sad."

Been in a big funk the past few days and now it is time to SNAP out of it......Dake's quote from a long time ago  was "Life is too short to be sad." So forward we will go.

Lyndsey finishes up her three year apprenticeship at the Houston Country Club under the skills of master chefs, executive chefs and sous chefs. We are so excited. She will come home to Athens and catch her breath and begin her journey of job hunting.  Her first ambition is to teach and teach at a  competition level with ACF (American Culinary Federation) qualifications   She hopes to be closer to family and we definitely do too..  So it begins....I am excited for her new chapter and especially getting to see her a little more.
Gracey has been counting the days since she left.  She left when Gracey was  in the second grade and she knew she wouldn return when she started fifth grade...this fall she starts the fifth grade and Lyndsey comes home. Gracey is beyond excited.

Dake said "Oh No! Now I will have two sister telling me what to do!"

Gracey and I will fly out next week and get her packed and bring her home....YAY!

Monday, July 18, 2011

"Sometimes God allows what He hates to accomplish what He loves."
— Max Lucado

Friday, July 15, 2011

Isaiah 65:24

Before they call, I will answer; and while they are still speaking, I will hear" (Isaiah 65:24).

"Before you even utter a word," God promises, "I'm involved in answering. In fact, while you're speaking, I'm involved in bringing to pass the very thing I have planned from the get go."


You know I am going to just tell you straight up, I HATE this disease.  It has robbed my child of his strength, quality of life and dignity.  I have watched with diligence for almost 21 years of his life.  I have watched as the life has been drained out of his spirit.  I've watched the frustration of  this disease steal his stature and ability to become the man he desires to be.  Knowing that there is not a  dang thing I can do about it makes the hatred of this disease grow stronger. The strong feelings of hate for this disease can come out of anywhere and at anytime.

      Yesterday we had a long wait at the airport in Baltimore.  We were in the family restroom all together and it hit.....We had a meltdown.....Yelling, anger, fear and tears filled this little room in a public area.  (Hopefully no one was waiting.) My heart still hurts today as I remember Dake plea desires to be independent and to be a man.  A man with an independent life.  It breaks my heart I cannot give him that. As a parent, we are suppose to teach our children independence and then one day give them it. It is one of the best gifts of all and  to let them fly.

     On Wednesday night, Dake stayed alone in the hospital.  "They" highly recommended the parents not David pushed me in the cab, both our hearts were reluctant.  This is the first time EVER Dake stayed away from us without someone he knew personally to help him.  (on of the hardest things I have ever done).  Before we left I was trying to explain to the staff he was not able to turn over and he would have to be turned regularly in the night.  The nurse nonchalantly said, "Not a problem all he has to do is push the button and we will be here." Sounds simply right?   Not for a Duchenne patient who #1 cannot  reach to get the button and  #2 then push it. Finally the research coordinator understood and had maintenance replace the call button with a "soft touch" button.  You could almost breath hard and set this button off.  (This made leaving a little better. Not much but alittle.)I placed the button where he could easily touch it and David and I positioned him in his favorite pose and we left.  I kissed Dake goodbye and he told me not to cry.....he was calmer about it than I thought he would be.

Early the next morning we arrived in the hospital and Dake was in an awkward position for him. I greeting him cheerfully and said, "Hey,  we all survived!" I asked him how it was last night and he said he did OK until early morning and he could not find the button. I said but I left it right here to help you. One of the nurses who took his vitals moved it during the night thinking he just had to roll to touch it and call. I asked him, "What did you do?"  He said he yelled for a nurse until the lady next door pushed her call button to get help for him. (my stomach did a flip flop....ugggh.)   Within thirty minutes David and I were worn out adjusting and arranging him to a comfortable position. He was almost in a panic, he was in constant need of us all day.

I do not know if this was what triggered the moment in the restroom at the airport or not.  But I think reality kinda showed him (even though he knows)independence may not be plausible.

I am not sure but it hurts either way.

Wednesday, July 13, 2011

Picture at Johns Hopkins July 13, 2011

  Dr. Leung performing a pulmonary function test on Dake....
.Looks like Dake
might have smelled something

 Dake is with Dr. Genila Bibat, the research coordinator  for the research team.

 Rodney Cobb doing an ultra sound
 on the artery on Dake's arm.
 Hardest part is Dake staying
 completely still for five minutes...
this was not at all invasive.....Yay!
 Dake says this is getting a waxing done of his belly..
He told Rodney to be gentle.  "RIP"

Waiting....lots and lots of waiting.....

 At least he gets to wait while resting this time...".Nighty Night Daker!"

Started the Day with TESTS!

Dake arrived early to Johns Hopkins.  He started the day off with tests. His first test was a pulmonary test called a Forced Vital capacity...It is when he blows with force in this instrument to check how his lungs are working. Then he did the Pincher and Grip Test. This test measures his muscle strength in his hands and arms ...then an all over physical was done as well as an all over muscle assessment. .   At 9 o' clockish he went to get a Flow Mediated Vasodilation (FMD) ...this test is an ultra sound of the main artery in his left arm going to his heart. They are checking the dialation and flow of blood in this artery.. Then the ever famous urine test was done.  Following the above test the neurologist had a CT of his abdomen to check for fluid on his stomach. This is not part of the research but the neurologist thinks his stomach maybe collecting fluid and she is checking to make sure  . David said the only thing they would find would be "hamburgers" in his stomach....

The cardiologist came in a discussed what was ahead and what he has seen so far.

We answered a several page questionaire about his daily life.  He finally was able to eat at 2:00 pm today....He was more than ready.

The very first pill was given to Dake at 2:00 pm.......It has begun.......!

Dr. Leung who is doing her fellowship in  neurology came in about 30 minutes after he took his first medication and ask how he was feeling..????  Dake replied, seriously,  "I believe I can get up and WALK!"  He said, "It works, it works!"  She does not know Dake's sense of humor....Her expression was priceless.....She finally realized he was teasing and laughed.  It was too funny. 

Now we have more waiting to make sure everything goes well.

We finally Made it to Baltimore

We left Huntsville in a crazy rain storm.  When we took off as the rain was pouring down and lighting was in the distance. Soon we were in the middle of the clouds then in the middle of our air time we climbed up above the clouds and the sky was so amazing... the beauty of the sky was awesome. The sun highlighted the clouds and it made you feel like you touched a piece of heaven.....

   Getting on the plane went well and not any trouble. The beautiful sky gave me lots of hope all was going to go well.  Then we landed.........Dake told us prior to landing  he had a major" wedgie'. We could not help him until we landed without looking like we were molesting him.  We couldn't get up and move him because we had to stay in our seats most of the way because of the storm and turberlance. The warning  signs turned off and we were finally able to  relieve him . We landed.  Everyone emptied off the plane and we patiently waited for the exiting aisle chair to arrive. We waited and waited and waited...the time for our handicap shuttle (which I triple reminded them to have a handicap accessible vehicle because of our last trip)to pick us up came and went and we waited and waited.  Let's just say this is the part where the "straw broke the camel's back."  The good news is David got to spend the night with Dake and I in the hotel. The bad news is David almost had to spend the night in jail. Surely, we are not the only people who ever traveled with a motorized wheelchair but from the reaction of the airlines you would think so.

We finally made it to the hotel....all three of us. It was around 9:30 pm and we were starving....we had not eaten since breakfast.  I found this four star hotel online in  package deal with the airline tickets cheaper than a 2 star hotel. The hotel is historical and gorgeous.  The man at the front desk told us the restaurant would be open until 10:00 pm. This gave us about 30 minutes to get in our room and back down to the restaurant. When we got to this beautiful restaurant, the waiter was friendly and went to seat us.  I was leading our group to the seat the waiter had appointed for us. He gave us wonderful table overlooking the entrance. On the way to our table, I saw a little mouse scurry across the floor right by our table. (ok....beside the fact, we were in an eating establishment  and we saw a mouse ......mice are my least favorite things on the earth. Ok, honestly,  I am kinda scared of the furry things uggggh)....We told the waiter and he laughed and said yeah I saw it too......NOT GOOD!
 ( But I did not scream at least....)

Tomorrow is a new day.....right?

Tuesday, July 12, 2011

Today We Take Off to Baltimore

We leave for Baltimore today.  Got everything pretty much ready to go and trying to get details for Gracey settled. Hopefully we will get there and settle down for the night. The day will start early tomorrow.  David is not feeling well so it will be harder all around since he can not really take a moment to recoup. He is having headaches lately....we checked his blood pressure and it was elevated just slightly so we a keeping an eye on it.  David does not usually get sick but  definitely does not have headaches. The heat could be a factor possibly.  Being a caregiver you do not have time to be sick or feel bad. The show must go on. Pray he feels better. 

Dake goes and gets his medication starting tomorrow.  He will either get the actually medicine or a placebo. We will not know and even the doctors will not know, only the computer.  After six months and lots of evaluations and test we will know if he had the actual drug or not.  I pray that the best for Dake happens whatever that is. 

Monday, July 11, 2011

Last Minute Details for Trip To Baltimore

Trying to finish the last minute kinda stuff. I did triple check the shuttle because of the problems last time. Dake does not seem nervous but does not look forward to the physical trip.  He dreads the ups and downs of traveling in a wheelchair.  But some things are not avoidable. So we leave, Tuesday, July 12 in the evening out of Huntsville. Gracey is staying with grandparents again and my nephew will be there too so she will have plenty of "picking on" to do....poor Nick!  Nick has agreed to teach Gracey his soccer skills while we are gone. So they will be busy.

Saturday, July 9, 2011

A Day at the Creek

Today we meet family in Minor Hill at Mt Zion at the creek.  It was an absolute perfect day for a picnic and playing in the creek. This spot on earth is such a unique place. It is pure and simple. Today, in the age of technology, it is refreshing to see nature entertain young and old in it's pure simplicity.  (by the way, no cell phone service in this area)

Every year we frequent this same place out in the "boonies" and every year we get lost getting there. It is so far out that the pavement turns to gravel and soon turns to dirt before arrival. Some streets have names others don't. Every year I vow to take a can of spray paint to mark the way. This year there were pink balloons marking our path. We assumed that someone in our group had a similar idea of marking the way and graciously helped us.  When we finally arrived we discovered a little girl was celebrating her birthday at the pavillon by the old church. We are just glad it lead us to the right place.  This place is so tucked in the woods that not only do we get lost each year going to the creek we seem to get lost coming back out....

The rain caused the creek to swell and brought more fun for the kids (old and young) as they played in the natural water slide.

We all had an amazing time.  I have to admit with all the fun and sun my mind occasionally drifted to the events ahead for next week. We leave on the 12th of July to return to Baltimore for Dake to start his treatment. I found my mind wandering in apprehension of the week to come.  As quick as my stomach would do a flip flop from the thoughts of Baltimore, I would get splashed from giggling kids back to reality.  It was a good day.

Dake and Nick

Dake and Nick being "Dake and Nick"!