tag:blogger.com,1999:blog-64731329373793697782024-03-19T03:33:51.663-07:00The Heart of DakeUnknownnoreply@blogger.comBlogger139125tag:blogger.com,1999:blog-6473132937379369778.post-79954136782541706732012-10-24T21:59:00.002-07:002012-10-24T21:59:33.399-07:00Even if...by Kutless<br />
Even if the healing doesn't come......God is Good.<br />
<br />
<br />
<br />
<br />
<iframe width="560" height="315" src="<a href="http://www.youtube.com/embed/HqOkZiOb9u0">http://www.youtube.com/embed/HqOkZiOb9u0</a>" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6473132937379369778.post-66551876604507289982012-10-24T21:39:00.001-07:002012-10-24T21:39:37.193-07:00Equipment for Handicapped For Sale<div style="text-align: center;">
Our sweet son passed into his heavenly home on October 15, 2012<br />
<br />
Soon the story of Dake's last few days will be posted for those who have asked for more details. These details are not easily coming so please be patient with us as we process our new reality.</div>
<div style="text-align: center;">
We need to sale a few things to help us move forward. We donated many of Dake's equipment. We donated his bed, shower chair, his older wheelchair, (not new one, we are selling it for 1/3 of the price and will have details.<br />
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<div style="text-align: center;">
FOR SALE </div>
<div style="text-align: center;">
2002 GMC Savana, </div>
<div style="text-align: center;">
white exterior, tan cloth interior, </div>
<div style="text-align: center;">
dvd player, TV, VHS player, CD player, cassette player, radio</div>
<div style="text-align: center;">
middle bench
seat folds flat to make a bed, </div>
<div style="text-align: center;">
van holds wheelchair and 6 to seven additional
passengers, </div>
<div style="text-align: center;">
braun lift in rear., captains chair for passenger next to wheelchair
passenger,</div>
<div style="text-align: center;">
front and rear a/c.,</div>
<div style="text-align: center;">
mileage is 169500 approximately.,</div>
<div style="text-align: center;">
v 6 engine. </div>
<div style="text-align: center;">
Tires in good confition, oil changed regularly.</div>
<div style="text-align: center;">
call 256-503-3494 or 256-777-4101 or email </div>
<div style="text-align: center;">
at <a href="mailto:picasso@pclnet.net">picasso@pclnet.net</a> </div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
For Sale $5000.00</div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
(A used Braun lift is approximate $3000.00 and a new lift would cost approximately $6000.00 and then the cost of installation is on top of that price,)<br />
<br />
<br />
<br />
Permobil Wheelchair<br />
Brand new Permobil wheelchair with all the things need for Duchenne Muscular Dystrophy or others with multiple special needs. We traveled to Duke University, in NC, in 1996 and talked and worked with a physical therapist whom specialized in Duchenne Muscular Dystrophy. <br />
The chair carried him beautiful for all the needs upto his end. <br />
Dake’s chair has only been used for six months.<br />
Top of the line, computerized, has every feature ever needed.<br />
It has a chair elevator which allows the passengered to raise up and have a conversation with someone standing. It helps the passenger to reach unreachable items above his or her head.It help the user adjust to fit under any table in a restaurant with no problem and etc.<br />
It cost us 30,000.00, we are selling for $10,000.00<br />
.We would love to give it to someone in need but it is not even finished being paid by us on our end. <br />The chair is a beautiful red.<br />
If pics or more info is need... please do not hesitate to call or email. <br />
<ul class="uiList _4kg _4kt _2s4"><div style="text-align: center;">
call 256-503-3494 or 256-777-4101 or email </div>
<div style="text-align: center;">
at <a href="mailto:picasso@pclnet.net">picasso@pclnet.net</a> </div>
<div style="text-align: center;">
</div>
</ul>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-65598006525836407842012-07-31T06:44:00.001-07:002012-07-31T06:44:15.349-07:00Home Ever Loving Sweet Home<br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">Home
Ever Loving Sweet Home<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">Home
is so nice and glad to be here.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">I
have to step back just for a moment to share this story.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">We
have been traveling back and forth to Baltimore for over a year now. <span style="mso-spacerun: yes;"> </span>We travel with the same airlines because they
fly out of Huntsville and they are the least expensive.<span style="mso-spacerun: yes;"> </span>The saying <i style="mso-bidi-font-style: normal;">you get what you pay for</i> is so true even in airfare.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">The
crews of the past flights were always impatient and let us know they were ready
to go when the aircraft landed. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>We are always the last ones to depart the
plane because it is easier to get Dake off the plane when all the others are
gone. (Plus we take more time to him get off, so no one has to wait.) The crew,
(pilots, stewards and stewardess), has to remain with the plane until everyone
is off the plane including us.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">In
our experience, most of the time it takes a while for the airport crew on the
ground to bring an aisle chair for Dake to exit the plan.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">Then,
usually we have another wait for the ground crew to get his wheelchair to the
door of the airplane so we can transfer him from the aisle chair to his
wheelchair.<span style="mso-spacerun: yes;"> </span>The crew in the past has
added to our frustration because they are ready to get to their destination and
we are “holding” them up.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: large;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial Black","sans-serif"; line-height: 115%;">One
time a captain was so ugly about having to wait and made a comment loud enough
for us to hear. <span style="mso-spacerun: yes;"> </span>David let him know he
did not appreciate his comment. A few words were exchanged and the captain
threatened to have David put in jail.<span style="mso-spacerun: yes;">
</span>(This was not a pleasant time.)</span></i><span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">But
on our last trip home we are not sure if we were all hallucinating from
exhaustion or maybe just delirious from the calamity of events from Baltimore.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">As
we landed we stayed in our seat and waited as we normally do but the next few
minutes were not the usual.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">As
we sat comfortably chatting as the last passenger exited the plane. The smiling
friendly steward came down the aisle and pulled our luggage from above in
storage. He stated that we would need to just take care of ourselves and they
would get our luggage and carry it off the plane to where we would meet the
wheelchair.<span style="mso-spacerun: yes;"> </span>I was speechless at first
and replied,” Oh it is ok we can get it.”<span style="mso-spacerun: yes;">
</span>He insisted to go through with his plan. “Whoa” that was nice and never
ever happened before.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">Then
the ground crew brought the aisle chair and rolled it carefully down to our
assigned seats. We are about midway back. It will take two and sometimes three
people to get Dake situated and secured in this tiny thin chair. (Dake has no
core strength or the strength to pull his arms in while rolling down the close
tight aisle so someone has to hold him so his arms do not flop and get caught
on the seats as we exited.)<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">It
was late at night and only one ground crew came to help with Dake. (Usually two
crew members come). David does all the lifting and gets him to the aisle seat
and the ground crew guy was behind the chair getting the straps straighten so
we could get him secured. The Captain of the plane come to us and gets down on
the floor on his knees and gingerly straps Dake in his chair and then he backs
out and holds Dake’s arms as they exit the plane.<span style="mso-spacerun: yes;"> </span>I almost cried at everyone’s kindness. This
just never ever has happened to us before. I am in shock.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">Then
the whole crew waits with us as we wait for his chair to be retrieved from
beneath.<span style="mso-spacerun: yes;"> </span>I am not sure what I looked
like but when there was some trouble with the chair one of the stewardesses
came over and hugged me. <span style="mso-spacerun: yes;"> </span>Nothing was
said just a kind hug. Finally the chair arrived and we all left together and as
we separated I profusely thanked them but I could not adequately get my words
out. They waved and acted like it was no big deal. Wow.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">The
kindness of those strangers touched us and we will never forget them.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">THANK
YOU TO THE AWESOME FLIGHT CREW OF FLIGHT 1873, ON AIRTRAN, ON JULY 24, 2012, FROM
BWI BALTIMORE, MARYLAND TO HSV HUNTSVILLE.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial Black","sans-serif"; line-height: 115%;"><span style="font-size: large;">A
little kindness goes a long way but an abundance of kindness goes to the HEART!<o:p></o:p></span></span></i></div>
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<br /></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6473132937379369778.post-12981264717899415282012-07-27T15:40:00.000-07:002012-07-27T15:40:04.247-07:00Ryan Lochte Swims for Duchenne Boys in the OLYMPICS<a href="http://www.parentprojectmd.org/site/PageServer?pagename=nws_index"><span style="font-size: large;">http://www.parentprojectmd.org/site/PageServer?pagename=nws_index</span></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-43275653323699079332012-07-24T15:57:00.000-07:002012-07-24T15:59:03.080-07:00Going Home Ever Sweet Home<div style="text-align: center;">
<span style="font-size: large;">The Cardiac MRI was run today on Dake but they were not able to get all the details they needed. </span></div>
<div style="text-align: center;">
<span style="font-size: large;"> Dake was worn out from the manual chair and not being in his own bed. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">The doctor told us they were able to get the core of the information needed for the research. Woohoo. Home here we come.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"> The test was run at 7:30 this morning but we would not be able to fly out until 8:25 tonight. This was the earliest flight we could get. We were still hoping the new joystick might arrive today so we would not have to push the 357lb wheelchair thru the airport. Especially since the wheelchair was not wanting to move easily.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;">We were also told this morning we may not get reinbursied for our hotel, flight, food and wheelchair that we had to purchase while waiting on the piece of equipment that never did get repaired. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">This went over about like a lead balloon.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">They had reassured us this was not going to be a problem before we agreed to even stayed. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">The main doctor who wrote the research had given his word on the phone that it would be taken care of if we stayed.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"> Needless to say we were not happy.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"> We will hopefully find out for sure soon.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Dake, Lyndsey, Gracey and I went to see <em>Brave. </em>The movie theater is next to our hotel. David was waiting in the lobby </span></div>
<div style="text-align: center;">
<span style="font-size: large;">for the UPS man to walk thru with the new joystick that we all had anticipated on. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">At 2:37 the UPS man came thru carrying several packages. In those packages was</span></div>
<div style="text-align: center;">
<span style="font-size: large;"> the well awaited joystick. HOORAY!</span></div>
<div style="text-align: center;">
<span style="font-size: large;">David and the very nice bellhop worked and worked on the chair until finally the familar click sounded and the chair could move. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">A special thank you to Mike Provines with AAA Home Health was our hero. If you ever need wheelchairs or other home health needs Mike is your man....we highly recommend him. He is with AAA Home Health out of Huntsville. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">You would think if you are at Johns Hopkins Hospital, you would not have a need to call Alabama for help.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;">As we are loading up the van provided to take us to the airport a mother with a son in a wheelchair, about 14 years old, was pushing and tugging his electric chair thru the doors of the same hotel. I totally recognized the frustration. We were getting our luggage out of baggage claim at the hotel so we did not have to lug our luggage around all day.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">The bell hop who help David was helping this family as well. They were speaking Spanish. I went over to ask if they needed help in English. The young man said his back wheels on his chair( that was just like Dake's )were not balanced. He would turn on the joystick and only one wheel would make contact with the floor and the other wheel would just spin. He was traveling with two women. One was his mother and maybe an aunt.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">When it looked like it was not a quick fix I gave them the wheelchair we had purchased to help them until they could figure their problem out on his chair.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">The were very appreciative. I explained it had saved us during a rough time and we hope it would help them.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;">We are currently at the airport waiting on the time for our flight.....</span></div>
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y</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-603242327509557462012-07-23T16:26:00.003-07:002012-07-23T18:08:51.689-07:00Still waiting and Lyndsey's birthday<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 78.4pt;">
<span style="font-family: "Comic Sans MS"; font-size: 16pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>Today is Lyndsey’s birthday (27)
and we are still waiting on the cardiac MRI equipment to be fixed. It has been
a bummer kinda of day waiting and hoping we could get called with good news. They
only calls have been “not yet” or “can’t get it fixed” . <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 78.4pt;">
<span style="font-family: "Comic Sans MS"; font-size: 16pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>The new used joystick is on it’s way and
should be here around 2 ish toomorrow. Pray this works.<span style="mso-spacerun: yes;"> </span>Getting the 357 lb chair to the airport will
be a major challenge. We currently have Dake in a chair we bought at a Rite Aid
drug store for $220.00. Dake’s poor body is having a hard time adjusting from a
$36,000.00 wheelchair to a $220.00 wheelchair. He is sore and has no control so
his spirits are low. (At least we are thankful it is only temporary.)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 78.4pt;">
<span style="font-family: "Comic Sans MS"; font-size: 16pt; line-height: 115%;">The last call was from the
research coordinator saying they have found another place to do the cardiac MRI
at 7:30 in the morning. Woo Hoo….at this point we would go at 3:00 in the
morning if need be.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 78.4pt;">
<span style="font-family: "Comic Sans MS"; font-size: 16pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>The only flight we can take is at 8:25 pm
tomorrow night. So we will be here a little longer but home is at least in
sight. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 78.4pt;">
<span style="font-family: "Comic Sans MS"; font-size: 16pt; line-height: 115%;">We all need <em>Snow White and the Seven Dwarves</em> t-shirts<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>labeled
“Grumpy”. Attitude adjustments needed.<o:p></o:p></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-15978042839835770212012-07-22T09:12:00.001-07:002012-07-23T06:11:24.922-07:00Wheelchair Under the Weather<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">We woke up to Dake's chair not working. We can not get the joystick to work. Maybe the moisture from all the rain? Maybe just completely worn out. Phillip and David started disassembling the joystick and now parts are laid out on the table like a surgeon performing and intricate surgery. Lyndsey and I have researched the Baltimore area wheelchair repair places and a place tor rent or purchase a manual chair for temporary use. We can not get his chair to go completely into neutral. </span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;"> Lyndsey found a drug store with a manual chair several miles away. (after calling 17 places). She, Gracey and David are on that adventure currently riding and switching public buses until they find the destination. They called and are on their way back but need us to look a couple of connection points. We had to purchase a portable temporary wheelchair. Poor David had to lug it all the way back in a box on the public transportation. </span></div>
<div style="text-align: center;">
<span style="font-size: large;"><span style="background-color: black; color: white;">They returned now and we have to assemble the new chair. We had to borrow tools from the hotel maintenance. We got him set up and we went to eat breakfast finally at 1:00 in the afternoon.</span></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /><span style="background-color: black; color: white;"></span></span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">I keep repeating the follow post to myself over and over again.</span></div>
<span style="font-size: large;"><span style="color: white;"><span style="background-color: black;"><span style="font-size: x-large;"> "God will not give you more than </span><br />
<span style="font-size: x-large;"> you can take, He may make you bend but you </span><br />
</span></span><span style="color: white;"><span style="background-color: black;"><span style="font-size: x-large;"> won't brake........"<br /> Group One Crew, <em>HE SAID</em></span>.</span></span></span><span style="background-color: black; color: white;"> ll</span><br />
<br /><span style="background-color: black; color: white;"></span><br />
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">I called several repair places and called emergency numbers. I had one man return our call only not to care.</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">I called our local repair guy, Mike Provines with AAA Home Health and ask if he could over night us a joystick. We sent him pictures and he is going to do his best to help us out. Thank you, Mike!</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">PRAY THIS WORKS!</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">If this doesn't work we will have to ship the wheelchair back I guess?</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">Dake is not comfortable which cause more stress on everyone.</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">Please Pray for US ALL.</span></div>
<div style="text-align: center;">
<span style="background-color: black; color: white; font-size: large;">Phillip is flying back to Alabama tonight so he can get back to work tomorrow.</span></div>
<div style="text-align: center;">
<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-25114214869298497322012-07-20T20:39:00.003-07:002012-07-21T15:21:00.341-07:00The Day of Test and NOT<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Testing @
Johns Hopkins @ One Year.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Our day started
with Dake doing ultra-sound of the heart’s artery in the arm.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">He went
next to get his weight and height. The ordinary type doctor visits.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">He has
lost 4 pounds since his 9 month visit. <o:p></o:p></span></div>
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<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">W00-H00!<o:p></o:p></span></div>
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<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">He has
lost 10 pounds in a year. Having a sister with culinary skills has paid off. YIPPEE!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">For a
non- ambulatory person in a wheelchair full time losing 10 lbs. is awesome!!!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">He then
moves to another room for an EKG. This went smoothly and easy. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">We go to
yet another room for the grip and pinch tests.<span style="mso-spacerun: yes;">
</span>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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>(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….)<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">At 9
months Dake got his best score ever. So today we were all anticipating great
news.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">They test
is done on each side.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Today the
results were disappointing. Unfortunately his grip strength and pinch strength
has declined from the 9 month test.<o:p></o:p></span></div>
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<td style="background-color: transparent; border: 1pt solid windowtext; mso-border-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135.9pt;" valign="top" width="181"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Pinch test</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: windowtext windowtext windowtext rgb(0, 0, 0); border-style: solid solid solid none; border-width: 1pt 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135pt;" valign="top" width="180"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Pinch test</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: windowtext windowtext windowtext rgb(0, 0, 0); border-style: solid solid solid none; border-width: 1pt 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 112.5pt;" valign="top" width="150"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Grasp test</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: windowtext windowtext windowtext rgb(0, 0, 0); border-style: solid solid solid none; border-width: 1pt 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 121.5pt;" valign="top" width="162"><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Grasp
test</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; height: 29.65pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135.9pt;" valign="top" width="181"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">9 mos.<o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.65pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135pt;" valign="top" width="180"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">12 mos.<o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.65pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 112.5pt;" valign="top" width="150"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">9mos.<o:p></o:p></span></div>
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<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.65pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 121.5pt;" valign="top" width="162"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">12 mos.<o:p></o:p></span></div>
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<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Left hand</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
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<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Left hand</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
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<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Left<span style="mso-spacerun: yes;">
</span>hand</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
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<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Left
hand</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 35.95pt; mso-yfti-irow: 3;">
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; height: 35.95pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135.9pt;" valign="top" width="181"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">4<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 35.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135pt;" valign="top" width="180"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">2.0<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 35.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 112.5pt;" valign="top" width="150"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">5.4<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 35.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 121.5pt;" valign="top" width="162"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">4.3<o:p></o:p></span></div>
</td>
</tr>
<tr style="mso-yfti-irow: 4;">
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135.9pt;" valign="top" width="181"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Right hand</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135pt;" valign="top" width="180"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Right hand</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 112.5pt;" valign="top" width="150"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: red; font-family: "Comic Sans MS"; font-size: 20pt;">Right hand</span><span style="font-family: "Comic Sans MS"; font-size: 20pt;"><o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 121.5pt;" valign="top" width="162"><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">Right
hand</span><span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;"><o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 29.15pt; mso-yfti-irow: 5; mso-yfti-lastrow: yes;">
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; height: 29.15pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135.9pt;" valign="top" width="181"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">4.5<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.15pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 135pt;" valign="top" width="180"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">3.0<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.15pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 112.5pt;" valign="top" width="150"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">7.9<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 29.15pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 121.5pt;" valign="top" width="162"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #4f81bd; font-family: "Comic Sans MS"; font-size: 20pt; mso-themecolor: accent1;">5.0<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
<br />
<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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.<o:p></o:p></span></div>
<br />
<table border="1" cellpadding="0" cellspacing="0" class="MsoTableGrid" style="border-collapse: collapse; border: currentColor; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 0in 5.4pt 0in 5.4pt; mso-yfti-tbllook: 1184;">
<tbody>
<tr style="height: 22.6pt; mso-yfti-firstrow: yes; mso-yfti-irow: 0;">
<td style="background-color: transparent; border: 1pt solid windowtext; height: 22.6pt; mso-border-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">Pulmonology<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: windowtext windowtext windowtext rgb(0, 0, 0); border-style: solid solid solid none; border-width: 1pt 1pt 1pt 0px; height: 22.6pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">TEST<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 22.6pt; mso-yfti-irow: 1;">
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; height: 22.6pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;"><span style="mso-spacerun: yes;"> </span>6 months<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 22.6pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">12 months<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 22.6pt; mso-yfti-irow: 2; mso-yfti-lastrow: yes;">
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext; border-style: none solid solid; border-width: 0px 1pt 1pt; height: 22.6pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt;">.73 liters of exhalation<o:p></o:p></span></div>
</td>
<td style="background-color: transparent; border-color: rgb(0, 0, 0) windowtext windowtext rgb(0, 0, 0); border-style: none solid solid none; border-width: 0px 1pt 1pt 0px; height: 22.6pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt; width: 238.85pt;" valign="top" width="318"><div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
<span style="color: #ffc000; font-family: "Comic Sans MS"; font-size: 20pt;">.92 liters of exhalation<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">We left this building and headed across the street for Dake to
get the Cardiac MRI.<span style="mso-spacerun: yes;"> </span>It is 1:00 in the
afternoon and Dake has not eaten.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>We stuffed half a
chocolate chip muffin down him and a sip or two of o.j. and off we went.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>They just made Dake’s day. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">NO MORE
POKING ON DAKE FOR TODAY!!!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Phillip
was <i style="mso-bidi-font-style: normal;">the chosen one</i> 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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">At this
point, you just wanna get it over with. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">This went
on for approximately 30 more minutes until finally it was “take-off” time!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">10
minutes has gone by…<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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?<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Two more
minutes go by and the door opens. Dake has been pulled out once again from the
tube. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">They
think the bed that slides in and out of the tube is not functioning. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">They
obey.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Travel is
such a challenge we chose to stay thru the weekend and hope the repair will
occur as soon as possible. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">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. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Staying
thru the weekend and going to live it up and enjoy the sights….<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Plan to
go to D.C.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">while we
are stuck waiting on the repairs. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Big
challenges lie ahead because we have no transportation. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">No fear
Phillip and Lyndsey are on a mission to figure out the public transportation.
They will have it mapped out in no time.<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">So for
tomorrow….nothing but Fun!<o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Comic Sans MS"; font-size: 20pt; line-height: 115%;">Please
continue to pray. Thanks. <o:p></o:p></span></div>
<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-68343498514036412332012-07-19T17:11:00.002-07:002012-07-19T18:13:31.961-07:00Arrived in Baltimore<div style="text-align: center;">
<span style="font-size: large;"> We arrived safely in Baltimore this morning around 9 a.m. central time. I knew it would be hot in Houston when we visited, and I knew it was hot in Alabama but I never thought Baltimore could be as hot. Most of the time we have spent here has been during the cold season. It was 104 degrees yesterday. It is exhausting. </span><br />
<span style="font-size: large;">We got out a little this afternoon but returned early because of the heat. We were all drained. Dake fell asleep and rested a couple of hours. Trying to keep him hydrated is not easy in this heat. He has to hydrate intensely prior to having blood drawn because of the difficulty he has had in the past. We decided to order in for supper and relax this evening getting ready for tomorrow's testing. We are watching, <em>The Three Musketeers </em>with the air conditioner turned to very (icicle) cold.</span><br />
<span style="font-size: large;"> (Yes, I know we are spoiled...ahhhhh!)</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-60716840604117533612012-07-17T14:29:00.002-07:002012-07-17T19:00:38.124-07:00ANOTHER TRY FOR NEW PULMONOLOGIST<span style="font-size: large;"><span style="font-size: small;">
</span></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">ANOTHER TRY FOR NEW PULMONOLOGIST<o:p></o:p></span></span></div>
<span style="font-size: small;">
</span><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">Dake had an appointment with the ONE
pulmonologist we found in the area who had at least seen one muscular dystrophy
patient. The office info us the doctor was not necessarily a Duchenne patient
but at least muscular dystrophy. <span style="mso-spacerun: yes;"> </span>So it
was worth a try to see if he will work with us.<o:p></o:p></span></span>
<span style="font-size: small;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">Dake and I meet Lyndsey
and Brittany at Alabama A & M before his appointment. Lyndsey is looking at
a couple of masters programs there. <span style="mso-spacerun: yes;"> </span>She
was like a child in a candy store.<span style="mso-spacerun: yes;"> </span>It is
a joy as a parent to see your child have a passion for something.<span style="mso-spacerun: yes;"> </span>To know they have a desire do to something so
strong and productive.<o:p></o:p></span></span></i>
<span style="font-size: small;">
</span></div>
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">The professors were
impressed with her credentials.<span style="mso-spacerun: yes;"> </span>(Of
course, my thought as her mom was if you are impressed with what is on paper
wait until you get to know her!!!)<o:p></o:p></span></span></i></div>
<span style="font-size: small;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">She was overflowing so
much with passion she was offered a job before she had even committed to
enroll.<o:p></o:p></span></span></i></div>
<span style="font-size: small;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">She has many decisions
to make ahead of her for her future. <span style="mso-spacerun: yes;"> </span>But
what a wonderful place to be, having choices is a blessing.<o:p></o:p></span></span></i></div>
<span style="font-size: small;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;">Dake and I left earlier
so he could eat before his appointment.<o:p></o:p></span></span></i></div>
<span style="font-size: small;">
</span><br />
<h2 align="center" style="margin: 10pt 0in 0pt; tab-stops: 287.1pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Cambria;"><span style="color: white;">We arrived at the
new pulmonologist office an hour early.<span style="mso-spacerun: yes;">
</span>I figured out I could get started on the mountain of paperwork I did not
receive in the mail. We went into the lobby and found the location of his
office. He was located close to the empty information desk in the lobby. The
door had his name and the other doctor he shares the office with was also on
the door.<span style="mso-spacerun: yes;"> </span>We tried to open the door but
the door was locked.<span style="mso-spacerun: yes;"> </span>This was early
afternoon time so I thought they must be at lunch.<span style="mso-spacerun: yes;"> </span>The info desk was empty and so I thought well
everyone must be at lunch.<span style="mso-spacerun: yes;"> </span>Neighboring
offices were busy with people coming in and out but I figured they had a
different policy.<span style="mso-spacerun: yes;"> </span>Five minutes till the
appointment time the info desk attendant returned and informed us that the
doctor had moved down the street. Really?... Seriously why not just put a sign
up people!!!!<span style="mso-spacerun: yes;"> </span>Better yet take down the
doctor’s name off the door!<o:p></o:p></span></span></span></h2>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><h2 align="center" style="margin: 10pt 0in 0pt; tab-stops: 287.1pt; text-align: center;">
<span style="color: white;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Cambria;">Extremely frustrated
we rushed to the car as fast as we could with a wheelchair, waited for the one
speed folding ramp to unfold, lower, wait for Dake to adjust his chair so he
would bump his head, raise the ramp and wait for him to carefully drive in the
van so he doesn’t give himself a scalp job, close both doors and now for me to
jump in.<o:p></o:p></span></span></span></h2>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="color: white;"><br /></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">We arrived at the new office and
repeated the above process in reverse and enter the waiting room drenched with
sweat.<span style="mso-spacerun: yes;"> </span>We explained to the receptionist
our challenges.<span style="mso-spacerun: yes;"> </span>She replied, Yeah, we
moved last October.<span style="mso-spacerun: yes;"> </span>This was our first
time here. A sign would have been nice.<span style="mso-spacerun: yes;">
</span>And the internet contact info needs a little update too. She wasn’t to
compassion about our dilemma. We received the mountain of paper work and began
filling them out. I was thinking, well, I guess we are the only ones with
having trouble finding his new office until another man came in with a similar
story.<span style="mso-spacerun: yes;"> </span>(She did not seem to bothered
about him either.)<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">Finally, after witnessing some waiting
room drama with other patients we went back to see the doctor.<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">(Not getting a good feeling at this
point but we will see.)<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">The doctor came in and was
knowledgeable about Duchenne . He seems to be willing to work with us with the
pulmonology issues. The thing that bothered me most was he was very negative
about telling us there is no cure and he was limited in what he could do and
most boys don’t live very long. (Of course we know all about Duchenne’s <span style="mso-spacerun: yes;"> </span>and the negative sides . Dake could probably
teach him a thing or two. )<span style="mso-spacerun: yes;"> </span>I told him, <span style="mso-spacerun: yes;"> </span>“I just wanted to know if you are willing to
work with us….I KNOW you are not God. “<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="color: white;"><br /></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">He agreed and that was that. He wants
to do some testing after our Baltimore trip.<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">I just don’t want to be bombard with
the negatives of the disease when our lives currently is positive with the
disease. We all know this can change in a minute but let us enjoy the good
while we can. <span style="mso-spacerun: yes;"> </span>It helps anybody to say
encouraging words to them.<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">Dake said maybe he thought we didn’t
know. I said, <span style="mso-spacerun: yes;"> </span>“Surely he did you have
out lived all the ones you have known. They were almost all younger than
you.<span style="mso-spacerun: yes;"> </span>He had to know we knew the doom and
gloom side because you are eight years over what the doctor’s said you would live!”<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">Our former pulmonologist who moved to
Arizona was so encouraging and made Dake want to work at stay healthy. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I
really miss him. <span style="mso-spacerun: yes;"> </span>I think maybe I could
have used a little encouragement from doctor too.<o:p></o:p></span></span></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="color: white;"><br /></span></div>
<span style="color: white;">
<span style="font-size: small;">
</span><br />
</span><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: 18pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="color: white;">But we at least have one familiar with
muscular dystrophy and we are going to focus on that!!!!<o:p></o:p></span></span></span></div>
<span style="color: white;">
</span></span><span style="color: white; font-size: small;">
</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-83185466547987824902012-07-16T06:07:00.001-07:002012-07-22T14:28:01.262-07:00<span style="font-size: x-large;">"God will not give you more than you can take,<br />He may make you bend but you won't brake........"<br />Group One Crew, <em>HE SAID</em></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-23670057647062422252012-07-14T16:44:00.000-07:002012-07-14T16:44:40.289-07:00<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">VISITS<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Nick and Brittany are
here now visiting. They are Dake, Lyndsey and Gracey’s first cousins. <span style="mso-spacerun: yes;"> </span>Dake always enjoys family visiting. It seems
to lift his spirits and seems to motivate him too. Right now all of them are in
the kitchen plus Phillip and a friend of Gracey’s, Chesney cooking supper. The
chatter and laughter is joy to my heart.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">One Year at Johns
Hopkins for Dake’s Heart Research<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>We are coming up on
the one year mark of Dake’s research at Johns Hopkins in Baltimore,
Maryland.<span style="mso-spacerun: yes;"> </span>The whole family plus Phillip
is planning on making the trip. We want to be together as we wait for his
results and celebrate (hopefully) together.<span style="mso-spacerun: yes;">
</span>He has been working out in the swimming pool hoping to inflate his
results. <span style="mso-spacerun: yes;"> </span>We plan on putting Dake in his
old chair because of the damage done in the past.<span style="mso-spacerun: yes;"> </span>He will have a hard time adjusting back to it
but it is best considering our luck with airlines and wheelchairs.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Lyndsey will be having a birthday the following Monday so she
is going to pick a place in Baltimore to celebrate her special day.<span style="mso-spacerun: yes;"> </span>It is so fun having a certified chef in the
family. <o:p></o:p></span></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-78039388836642752442012-07-12T08:17:00.001-07:002012-07-12T08:17:52.984-07:00A VERY Stressful Day for Dake<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">A VERY Stressful Day
for Dake<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Talking about stress,
Dake had a major stress moment on Tuesday (July 10).<span style="mso-spacerun: yes;"> </span>The lady (an angel in my opinion) who comes
and helps us out with the house and Dake was at our house.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-size: large;"><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: "Agency FB","sans-serif";">Dake
has a station set up for him in a small room off the kitchen. This is next to
his bedroom and kinda gives him his own personal space yet still in the
house.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>My dad custom made him a table (desk) to house
his computer, television and a telephone. The garage is off this room and he
will go outside often and enjoy the sun.<span style="mso-spacerun: yes;">
</span>This is the way he goes to get to the front of our house. We leave the
door slightly cracked so he can come in when he wants to get out of the heat.
My mom and dad live across the street kinda caddy cornered from our driveway.
Our mailboxes are on mom and dad’s side of the road. I tell you all of this
info to continue with the story. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<br /></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Our living room is in the front of the house
away from Dake’s area.<span style="mso-spacerun: yes;"> </span>Lyndsey and I
were in the living room on this day during this time.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Dake had had his breakfast and retrieve to do
computer stuff or watch a movie. <span style="mso-spacerun: yes;"> </span>This is
his morning routine unless he is a little tired and he will go outside in the
sun and maybe nap some….(Lyndsey calls Dake a cat<span style="mso-spacerun: yes;"> </span>because he migrates to a warm sunny place to
nap.)` The lady finished and came thru the living room and said, “Bye” then
left. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Lyndsey and I were
busy doing computer work in the living room and Dake was in his area watching a
movie are working on something.<span style="mso-spacerun: yes;"> </span>Usually every
30 minutes or so, Dake will come visit us in the living room when he takes a
break or if he needs something.<span style="mso-spacerun: yes;"> </span>This
morning about 30 minutes had passed since the lady had exited out the front door.<span style="mso-spacerun: yes;"> </span>I thought to myself, ‘Dake must have found
something interesting this morning because he hasn’t been in to see us for a
while.’<span style="mso-spacerun: yes;"> </span>Another 15 minutes or so go by Dake
and my mom comes from the back of the house <span style="mso-spacerun: yes;"> </span>into the living room.<span style="mso-spacerun: yes;"> </span>Dake is drenched in sweat. He said in a panic,
“Didn’t you hear me calling?” <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Lyndsey and I are totally confused. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Why was my mom with
him? Why was he covered in sweat if he was watching a movie? Why did I not hear
him if he was in his computer area?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">I replied,” No, Dake,
why?” I am still very confused. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Dake said the lady
let him out the garage before she left through the living room. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>She
then came into the living room and said, “Bye”, but did not say anything about
Dake going outside.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">I just assumed he was
in his computer room.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Dake went into the
garage and fell asleep. He got sweaty while sleeping and his had slipped off
the joystick and arm rest. <span style="mso-spacerun: yes;"> </span>His finger
must have turned his chair electricity off which is near his joystick.<span style="mso-spacerun: yes;"> </span>He woke up but he could not get his arm back
up on his arm rest. <span style="mso-spacerun: yes;"> </span>He screamed and
yelled for Lyndsey and I but we never heard him.<span style="mso-spacerun: yes;"> </span>He was in the garage about 30 minutes yelling
for us.<span style="mso-spacerun: yes;"> </span>He could not move or get anyone
of us to hear him.<span style="mso-spacerun: yes;"> </span>Luckily my mom went
out to get her mail and thought she heard Dake’s voice.<span style="mso-spacerun: yes;"> </span>She thought at first he was in the backyard
calling for us. <span style="mso-spacerun: yes;"> </span>Dake said he was at the
point of saying ugly words.<span style="mso-spacerun: yes;"> </span>(He apologized
to his grandmother if she had heard anything.)<span style="mso-spacerun: yes;">
</span>She found him in the garage and brought him inside.<span style="mso-spacerun: yes;"> </span>I felt so bad. How horrible! <span style="mso-spacerun: yes;"> </span>I did not even hear him.<span style="mso-spacerun: yes;"> </span>Neither one of us did. If I had known he was
outside I would have had my ears in high radar mode.<span style="mso-spacerun: yes;"> </span>I usually check on him frequently when he
goes out these days because of the heat.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Ok….I deserve the “Bad
Mother’s Award” for this one. <span style="mso-spacerun: yes;"> </span>I do.<span style="mso-spacerun: yes;"> </span>I do. <span style="mso-spacerun: yes;"> </span>Just go ahead and say it. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">He got well hydrated
and was fine. Thank goodness. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Thank God my mom loves to get her mail and has
good hearing. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Dake was in an
awesome mood the rest of the day. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>I told Lyndsey maybe 30 minutes of gut curdling
screaming was a good stress reliever we should all try….<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">(I MUST make sure and
tell my mom our plans if we choose this method of stress relief because she
might have a little added stress going to the mailbox!)<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<br /></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-34726811446941291402012-07-11T12:03:00.000-07:002012-07-11T20:04:43.233-07:00Stressed spelled backwards is DESSERTS!<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="line-height: 115%;"><span style="font-family: Calibri;"><span style="font-size: large;">Stressed spelled
backwards is DESSERTS!<o:p></o:p></span></span></span></b></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">Stressed spelled
backwards is desserts!<span style="mso-spacerun: yes;"> </span>This statement
helps me sometimes….just knowing it makes me happy and feel better.<span style="mso-spacerun: yes;"> </span>I get tickled when the doctor and or anybody
who does not know us ask, “do you have much stress in your life?” <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Ohm,
maybe a little……but doesn’t everybody?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Ok.<span style="mso-spacerun: yes;"> </span>Everybody does have stress BUT what is the
best way to channel it or relieve it. I guess I feel like stress is like air in
a balloon.<span style="mso-spacerun: yes;"> </span>The more air equals more
stress.<span style="mso-spacerun: yes;"> </span>The balloon grows and grows
until it of course burst.<span style="mso-spacerun: yes;"> </span>I feel like
our family, as a whole, is so good of riding out the storms but we let the air
in balloon little by little, day by day until the balloon has reached its maximum
capacity and then everyone blows up. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Then, we have a
“family” meeting and everyone gets it out.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>We are exhausted from all the “air” that has
built up”….<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We talked about doing
it like once every couple of weeks or so but honestly we are afraid it would be
a total world of “overload” all the time. Frankly we don’t have enough emotion
energy.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Having to do 95%, (day
and night), of another person’s movements is not only hard on the individual unable
to complete the movement but the individual(s) who is helping. ….in other words
this can equal stress for everyone even on the best of days.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-size: large;"><br /></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We are trying to work
on stress as a whole.<span style="mso-spacerun: yes;"> </span>.<span style="mso-spacerun: yes;"> </span>Dake is stretching and working out in the
pool a couple times a week.<span style="mso-spacerun: yes;"> </span>He has been
working really hard.<span style="mso-spacerun: yes;"> </span>(Water is the best
place for a Duchenne Muscular Dystrophy boy to exercise. The water takes the
weight off the muscles making it possible for lots of boys to have the
sensation of walking long after they are in a wheelchair. Dake swam well as a
child.<span style="mso-spacerun: yes;"> </span>It was the only physical exercise
he could beat his 15 month old younger sister at when they were younger.) <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="line-height: 115%;"><span style="font-family: Calibri;"><span style="font-size: large;">Another fun fact about
Duchenne Muscular Dystrophy is they all float.<o:p></o:p></span></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="line-height: 115%;"><span style="font-family: Calibri;"><span style="font-size: large;">This is nice when they
can turn over by their selves but not good if they can’t and land up face down.<span style="mso-spacerun: yes;"> </span>We have to weigh Dakes legs down in the pool
so he can experience a little walking.<span style="mso-spacerun: yes;">
</span>We always tease him and say we are with the mafia and this is our
version of concrete blocks. <o:p></o:p></span></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We have all been
exercising regularly and eating right for a while now. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Which is always good….not always fun but good.
<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Our individual plan
for stress is……<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Lyndsey gardens and cooks. Gracey has
gymnastics.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Dake retrieves and
gets on a computer or goes outside by himself.<span style="mso-spacerun: yes;">
</span>David retrieves and starts cleaning angrily. He has football games in
the fall.<span style="mso-spacerun: yes;"> </span>(I, personally, am not always
sure football is a stress reliever….it seem pretty stressful as serious as he
takes it.) <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">I paint.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We all have our outlest but it seems we need
more sometimes. <o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">Anyone have any
suggestion please send me your comments.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
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<br /></div>
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</span><br />
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<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-87930787313474893712012-07-10T19:08:00.001-07:002012-07-10T19:09:29.843-07:00Spots, Dots and Polka Dots<div style="text-align: center;">
<strong>Spots, Dots and Polka Dots</strong> </div>
<div style="text-align: center;">
<span style="font-size: large;">My "studio" dog is a dalmation named Crayola. When I paint in my studio she stays right beside me for every stroke. She is my loyal friend.</span></div>
<div style="text-align: center;">
<span style="font-size: large;"> She</span><span style="font-size: large;"> had 12 puppies 2 weeks ago. Ten beautiful puppies survived and are thriving very well. They are cute little rolly pollies with polka dots. Taz. the dad of the pups is a liver and white dalmation and Crayola is the traditional black ands white. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">So far one little girl puppy is covered all over with liver colored spots. There is possibly another couple pups with their dad's trademark....only time will tell. Dalmations are not born with any spots and the first sign of any dots and spot is at a week. They are mostly light at this time and continue to come in and get darker upto a year.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">We would have never quessed she had 12 little pups in her tummy. She has been such an intentive mother and is doing a great job. Her puppies will be ready for new homes around August 5th... ish....We are selling them if anyone is interested. The liver colored spots are rarer and the picks of the litter will sell for $350.00 and the traditional black and white cuties will sell for $300.00. They will be CKC registered. Mom is CKC registered and Dad is AKC registered. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI231KtEPjyUVkdAg96niN_cQqpGzlu7UFOLEMZwQN9uRAq7o0zcykRB3nijYoPoU74dTRlbQFI-SQvRrF4l-6Q3BJhNiHPcuP7WbUspDJxb96fFNZ19PnRZ-mZUGSUzTTwedCggdKi8a4/s1600/puppies+asleep+in+a+row.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI231KtEPjyUVkdAg96niN_cQqpGzlu7UFOLEMZwQN9uRAq7o0zcykRB3nijYoPoU74dTRlbQFI-SQvRrF4l-6Q3BJhNiHPcuP7WbUspDJxb96fFNZ19PnRZ-mZUGSUzTTwedCggdKi8a4/s320/puppies+asleep+in+a+row.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhITD5mBC3ZmUmxTvTltsStvdW9X9v8n0AFY2218190-RXw6fgOnnMnAFSyd359D1zs8PgaFWDQ0wE-W9k4AMS84cLzZcaOdRr3peVdG0MQ4Pz-kFB5PvcC-1LJHT9WdXgVCIIqTtJu6lmf/s1600/three+little+piggies.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhITD5mBC3ZmUmxTvTltsStvdW9X9v8n0AFY2218190-RXw6fgOnnMnAFSyd359D1zs8PgaFWDQ0wE-W9k4AMS84cLzZcaOdRr3peVdG0MQ4Pz-kFB5PvcC-1LJHT9WdXgVCIIqTtJu6lmf/s320/three+little+piggies.jpg" width="320" /></a></div>
<div style="text-align: center;">
<span style="font-size: large;"> Let us know if you want to take a look to buy or just for fun.</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-size: large;">I wanted to say "Thank" to those sending in suggestions for Dake (as requested in "Needing Something") in last post....some awesome ideas...PLEASE, Please keep'em coming.......</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-733942887446645492012-07-09T12:35:00.001-07:002012-07-09T12:35:52.438-07:00Needing Something<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Something to Do<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">We have known Dake
needs something productive with his time for a while now.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>He has
tried different things. <span style="mso-spacerun: yes;"> </span>Right after high
school he wanted to work.<span style="mso-spacerun: yes;"> </span>He was a tour
guide for Children’s Museum for a year and a half. <span style="mso-spacerun: yes;"> </span>Then he decided to go to school for a couple
years and had to stop because of fatigue. <span style="mso-spacerun: yes;"> </span>He did go to a couple of class with Athens
States continuing education. <span style="mso-spacerun: yes;"> </span>Dake needs
something to do.<span style="mso-spacerun: yes;"> </span>He has seen every movie
and T.V. show American and British, well, just about.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>He is
great on his computer but limited physically in his abilities. He can fatigue
easily but it is some better for now. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>He can move his fingers to do his computer but
needs help with raising hands and arms. <span style="mso-spacerun: yes;"> </span>This has been a challenge for all of us for
such a long time. We have just run out of ideas.<span style="mso-spacerun: yes;"> </span>If you have any ideas even if you are not sure,
please make a suggestion. <o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">We have prayed and
prayed for answers and now we ask you to help us pray.<o:p></o:p></span></span></div>
<br />
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<br /></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6473132937379369778.post-62218845275284580092012-07-05T21:48:00.001-07:002012-07-05T21:48:55.440-07:00Postcards for sale<div style="text-align: center;">
<span style="font-size: x-large;">Postcards for sale</span></div>
<div style="text-align: center;">
<span style="font-size: x-large;">Cards have six current paintings on front of cards with a correspondence back side</span> </div>
<div style="text-align: center;">
<span style="font-size: x-large;">$2.00 each or $18.00 for 10 postcards</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZqS36PoqDYhNqszjvT4kxmDvBkRMUO-ZP_zls_LqlJ5IsRpoakNp_U_S5CBIsx1tRmdRjfqsHFFXRl-NRZTpvufJYYxN3QKiFTdCSLAyKJLrXn4sg3DswlOi6VNp0avGKSGphMxx4i9Dl/s1600/variey+postcard.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="248" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZqS36PoqDYhNqszjvT4kxmDvBkRMUO-ZP_zls_LqlJ5IsRpoakNp_U_S5CBIsx1tRmdRjfqsHFFXRl-NRZTpvufJYYxN3QKiFTdCSLAyKJLrXn4sg3DswlOi6VNp0avGKSGphMxx4i9Dl/s320/variey+postcard.jpg" width="320" /></a></div>
<div style="text-align: center;">
<span style="font-size: x-large;">You can order postcards on <a href="http://www.artbylynn.etsy.com/">www.artbylynn.etsy.com</a> </span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-35805378514990795392012-07-05T12:17:00.001-07:002012-07-05T12:17:11.651-07:00Dake's NEW Wheelchair<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt center 370.5pt right 741.0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Kristen ITC";"><span style="font-size: large;">Dake’s
new wheelchair<o:p></o:p></span></span></b></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt; text-align: center;">
<br /></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">We have been working since December of 2011
to get all the paperwork finished<span style="mso-spacerun: yes;"> </span>and
approved for Dake’s new wheelchair. The last chair cost $27,000.00.<span style="mso-spacerun: yes;"> </span>He usually gets a new chair every five
years.<span style="mso-spacerun: yes;"> </span>When he was in high school
Lyndsey got a<span style="mso-spacerun: yes;"> </span>used car<span style="mso-spacerun: yes;"> </span>when she started driving. It cost
approximately $5000.00<span style="mso-spacerun: yes;"> </span>Dake got a<span style="mso-spacerun: yes;"> </span>new wheelchair when he was a senior. She was
jealous because her dad spent only $5000 on hers and 24,000.00 on his. She was
kidding ,of course. Insurance<span style="mso-spacerun: yes;"> </span>and
several agencies equal a wonderful thing.<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">David described it best when he said “he has
the Cadillac of wheelchairs.” <o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">His new wheelchair and his last three
wheelchairs have been <span style="mso-spacerun: yes;"> </span>a Permobil.
Permobil is a Swedish company with a headquarters in Lebanon, Tennessee. Dake
always wishes a Swedish girl would be included. (I am sure that would be an
extra fee.)<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>Dake,
Lurch, (his service dog) and I flew when Dake was 13 <span style="mso-spacerun: yes;"> </span>years old to a physical therapist, named Laura
Case, <span style="mso-spacerun: yes;"> </span>at Duke University whom
specialized in Duchenne Muscular Dystrophy. She told us then what we needed
until he would be twenty years old. ( Which is the usual lifespan of a Duchenne
boy)? Now at 28 years old, it is a great design for him still today with just a
few added adjustments to fit his body. Dake decided on the color orange for his
Dad. ( Tennessee fan) It was the first time it has been an option for a color. <span style="mso-spacerun: yes;"> </span>It has seven motors. It <span style="mso-spacerun: yes;"> </span>tilts<span style="mso-spacerun: yes;">
</span>(which helps with breathing and comfort), reclines, leg rest that raise
up and down, front wheel drive, has a seat elevator, (Helps him adjust to the
table he pulls up to in a restaurant or school. It helps in a place like
Wal-Mart when an item is up high on the shelf. It aids in self-esteem because
he can be at eye level when having a conversation. ) This new model of Permobil
has a new computer system on it which is ….awesome<span style="mso-spacerun: yes;"> </span>It has an indoor and outdoor mode.<span style="mso-spacerun: yes;"> </span>It has a pedometer on it that keeps up with
his mileage.<span style="mso-spacerun: yes;"> </span>It can go up to 6 mph…..(I
think I have a new running coach. Not sure these short legs can keep up with
him.) And his favorite part is it has a clock. I know this sounds simple but I
have duct tape, zip tied, and glued clocks<span style="mso-spacerun: yes;">
</span>on his previous chairs. He has challenges with time. Yahoo! No more
pages over the Wal-Mart intercom.<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">Seven months later Dake heard via email his
chair was in but still had to be put together. Two weeks was the approximated
time frame for delivery. He was so excited.<span style="mso-spacerun: yes;">
</span>Finally the day arrives…..Mike the wheelchair guy rolls in the beautiful
bright shine new RED chair.<span style="mso-spacerun: yes;"> </span>Dake says
nothing about the color. I came in later and admired the beautiful chair as he
showed me all his new gadgets…I noticed it was red but thought he had already
it. When Mike left I asked Dake about the color. He said he liked it so he did
not say anything.<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; tab-stops: 76.85pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">Red verses Orange….Yikes….kinda hard for an
orange fan to swallow. <span style="mso-spacerun: yes;"> </span>It is more like a
cherry red. <span style="mso-spacerun: yes;"> </span>And <span style="mso-spacerun: yes;"> </span>Dake was happy and that was what really
mattered.<o:p></o:p></span></span></i></div>
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</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">This chair came in with a total of
$36,000.00<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">Now …if I could <span style="mso-spacerun: yes;"> </span>only program it to clean the house……<o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">Dake looked like I have seen his face on
Christmas Day. He later told us he was caught up for the next 10 Christmas’. <o:p></o:p></span></span></i></div>
<span style="font-size: large;">
</span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">We are so, so, so very blessed and
thankful<span style="mso-spacerun: yes;"> </span>to be able have this elite type
of equipment for Dake.<o:p></o:p></span></span></i></div>
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<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-35944668930356657012012-07-04T16:46:00.001-07:002012-07-04T16:47:20.135-07:00The Learning Experience<br />
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<span style="font-family: Calibri;"><span style="font-size: large;">The New Pulmonologist Experience<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We
waited patiently <span style="mso-spacerun: yes;"> </span>in the vintage paneled
waiting room.<span style="mso-spacerun: yes;"> </span>It was after lunch time
frame.<span style="mso-spacerun: yes;"> </span>Soon a large robust <span style="mso-spacerun: yes;"> </span>woman, who had sweated off most of her make up(
but had reapplied her ruby red lips tick), called us back cheerfully. I
cheerful face is always welcoming in these situations no matter what condition <span style="mso-spacerun: yes;"> </span>it <span style="mso-spacerun: yes;"> </span>is <span style="mso-spacerun: yes;"> </span>in. <span style="mso-spacerun: yes;"> </span>The
nice lady had<span style="mso-spacerun: yes;"> </span>to take Dake thru the
kitchen <span style="mso-spacerun: yes;"> </span>break room <span style="mso-spacerun: yes;"> </span>area <span style="mso-spacerun: yes;"> </span>to
get him to the x-ray room. The other door way was too narrow for him to
enter.<span style="mso-spacerun: yes;"> </span>We went for two other stops
before making <span style="mso-spacerun: yes;"> </span>it<span style="mso-spacerun: yes;"> </span>to the “official “ doctor’s examining <span style="mso-spacerun: yes;"> </span>room.<span style="mso-spacerun: yes;">
</span>We kinda felt like we had been taken by the arms and swung around in
circles like when we were kids. <span style="mso-spacerun: yes;"> </span>Finally were
able to catch our breath while waiting<span style="mso-spacerun: yes;">
</span>on the doctor. The doctor comes in and was reading his file and
introduces himself to Dake and then to me. He seemed to me to be in a rush. <span style="mso-spacerun: yes;"> </span>He began to ask Dake questions about his
cough.<span style="mso-spacerun: yes;"> </span>He is asking <span style="mso-spacerun: yes;"> </span>his questions quickly. I could tell this question
began to make Dake nervous. (He told me later he felt like he was getting the
third degree.)<span style="mso-spacerun: yes;"> </span>When the doctor asks <span style="mso-spacerun: yes;"> </span>about specific<span style="mso-spacerun: yes;">
</span>medication or things Dake might not know names of I would tell him
specifics. This seemed to irritate the doctor. <span style="mso-spacerun: yes;"> </span>The doctor began to ignore me. <span style="mso-spacerun: yes;"> </span>So I stopped him and started asking him a few
questions…I asked him if he had ever worked with a Duchenne Muscular Dystrophy
patient.<span style="mso-spacerun: yes;"> </span>The doctor answered quickly in
a defensive tone.<span style="mso-spacerun: yes;"> </span>He said, “I have been
practicing medicine<span style="mso-spacerun: yes;"> </span>for thirty years!”<span style="mso-spacerun: yes;"> </span>Of course this did not answer our
question.<span style="mso-spacerun: yes;"> </span>So I continue to look at him
for more answers and he blurts out . “I have seen probably (he hesitates) four
or five.”<span style="mso-spacerun: yes;"> </span>I replied, “O.K., good! <span style="mso-spacerun: yes;"> </span>He immediately turns from me and <span style="mso-spacerun: yes;"> </span>ask Dake a few more questions.<span style="mso-spacerun: yes;"> </span>Then he sits there and reads a little and
says to Dake, “Now which muscles are affected with” your” Duchenne Muscular
Dystrophy? <span style="mso-spacerun: yes;"> </span>Dake blinks three times and
replies, “Uh ….All of them!” I then describe<span style="mso-spacerun: yes;">
</span>and tell him the progression of the basics of Duchenne Muscular
Dystrophy.<span style="mso-spacerun: yes;"> </span>In the background Dake looks
at me and widens his eyes as to say, “Is he serious?”<span style="mso-spacerun: yes;"> </span>My thoughts exactly. We politely listen to
the rest of what he said and got out of there as soon as we could.<span style="mso-spacerun: yes;"> </span>He had no knowledge about Duchene Muscular
Dystrophy. He would have never asked the question he did.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Was it
not obvious what<i style="mso-bidi-font-style: normal;"> </i>muscles are affected
when a person in a motorized chair <span style="mso-spacerun: yes;"> </span>cannot
even raise<span style="mso-spacerun: yes;"> </span>his<span style="mso-spacerun: yes;"> </span>arm to shake hands with<span style="mso-spacerun: yes;"> </span>you . (He just needed to be honest.)<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">We
came home and I called at least seven pulmonologist before I found one doctor
who has worked with a Duchenne.<span style="mso-spacerun: yes;"> </span>We go later
this month so we will see. <o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;"><span style="font-size: large;">I credit this doctor for teaching me
something.<span style="mso-spacerun: yes;"> </span>He continued to ignore me and
I realized if this had been a situation where Dake could not answer <span style="mso-spacerun: yes;"> </span>about his personal wants and <span style="mso-spacerun: yes;"> </span>needs we must <span style="mso-spacerun: yes;"> </span>have legal paperwork in order so the doctors
will listen to us. We do not want to be in the middle of legal issues at a
critical time with Dake’s health. <span style="mso-spacerun: yes;"> </span>So
Dake and the family are working on these details….So thank you arrogate pulmonologist.<o:p></o:p></span></span></i></div>
<br />
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<br /></div>
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<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-32061200819487633602012-07-03T16:56:00.002-07:002012-07-03T16:56:47.694-07:00Home Sweet Home<div style="text-align: center;">
<span style="font-family: Calibri;"><span style="font-size: large;">The night we returned home from
New Orleans.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">We got back home from the trip on
a Sunday evening.<span style="mso-spacerun: yes;"> </span>Dake<span style="mso-spacerun: yes;"> </span>had a runny nose at the beginning of the trip
but had gotten much better as the trip came to an end.<span style="mso-spacerun: yes;"> </span>When we got home within minutes he started
coughing.<span style="mso-spacerun: yes;"> </span>The cough continued until he
could not breathe very well.<span style="mso-spacerun: yes;"> </span>We pulled
out his electric nebulizer or the first since January.<span style="mso-spacerun: yes;"> </span>We gave him a treatment with two medications
in it.<span style="mso-spacerun: yes;"> </span>Soon he was able to relax and
breathe with ease.<span style="mso-spacerun: yes;"> </span>The cough had come on
out of nowhere mimicking the episode<span style="mso-spacerun: yes;"> </span>he
had back in the winter.<span style="mso-spacerun: yes;"> </span>That winter
episode lasted a month or little longer.<span style="mso-spacerun: yes;">
</span>I pray this was not going to be a repeat performance.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Dake slept pretty well Sunday night
with no more coughing.<span style="mso-spacerun: yes;"> </span>He woke up the
next day feeling fine.<span style="mso-spacerun: yes;"> </span>I was feeling
better about him when I left to drive Gracey’s carpool.<span style="mso-spacerun: yes;"> </span>Lyndsey would be home with him that morning.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>I left early to take Gracey to gymnastic.<span style="mso-spacerun: yes;"> </span>In the summer Gracey wakes up earlier than
she does for school. She practices 8:00 till 1:00 Monday, Tuesday, Wednesday
and Thursday<span style="mso-spacerun: yes;"> </span>equaling 20 hours a
week.<span style="mso-spacerun: yes;"> </span>Today was my turn to take the
carpool of the Athens girls and drive them to the gym in Decatur.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">I got the girls to the gym and
watched them as they warmed up. They so moved far more than my body would allow
me to that early in the morning.<span style="mso-spacerun: yes;"> </span>I had
nested in my usually spot and pull out my projects for the allotted time for
that day.<span style="mso-spacerun: yes;"> </span>I would watch when Gracey and
her teammates were on the side of the gym where I could see but the other times
I try to stay productive as much as possible. I had just got a good rhythm
started with my work in front of me when my phone rang.<span style="mso-spacerun: yes;"> </span>It was Lyndsey calling explaining Dake had
another coughing episode during his bath.<span style="mso-spacerun: yes;">
</span>The Home Health crew had called Lyndsey in and she set up his breathing
machine and had already had the medicine going. She said he was asking for
me.<span style="mso-spacerun: yes;"> </span>I told her I would call the general
doctor and the pulmonologist and for her to call me immediately if it did not
settle down She called back to let me know he had done well with the treatment .
I <o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>I knew I could think better if I called from
there instead of in the car or in the middle of Dake having difficulty
breathing. I also had to call my” back-up” mom and see if she could pick up the
girls in the afternoon.<span style="mso-spacerun: yes;"> </span>I also called my
mom to go over and check on things but I did not want Lyndsey to have to handle
things by herself especially if things did not get better. Don’t get me wrong,
she had everything under control but I wanted her to have back up just in case.
Our family and a few close friends are an amazing network when things get go a
little haywire. I thank God often of the awesome people in Dake’s life.<span style="mso-spacerun: yes;"> </span>I got my calls made and alerted Gracey of
what was going on and headed out the door. I had a 25 minute drive to home.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Our former pulmonologist <span style="mso-spacerun: yes;"> </span>had moved to Arizona (whom we loved) and we basically
were starting all over. I have talk to the pulmonologist’s receptionist getting
the general information and echoing paper work about a month ago. But Dake has
not actually seen him yet. The general doctor agreed we needed to go onto the
pulmonologist in Huntsville but he was on “standby” in Athens if we need him.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-size: large;">
</span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Dake was mad he had to go into
Huntsville.<span style="mso-spacerun: yes;"> </span>He did not want to waste his
time.<span style="mso-spacerun: yes;"> </span>(this was my first sign he was
feeling better).<span style="mso-spacerun: yes;"> </span>We loaeded up Dake up
and my mom and I headed to the new pulmonologist.<span style="mso-spacerun: yes;"> </span>There are a few things about Duchenne
Muscular Dystrophy that is handled a little different when it comes to
medicine. Pulmonology is one of those components a doctor must <span style="mso-spacerun: yes;"> </span>understand<span style="mso-spacerun: yes;">
</span>Duchenne Muscular Dystrophy or at the least he needs to have experience
with muscular dystrophy in general. ( David and I learned early on the
knowledge of Dake’s disease we could attain<span style="mso-spacerun: yes;">
</span>was the best defense in helping him get the best care.<span style="mso-spacerun: yes;"> </span>We<span style="mso-spacerun: yes;"> </span>attended
countless<span style="mso-spacerun: yes;"> </span>workshops, medical<span style="mso-spacerun: yes;"> </span>conferences, interviews with research doctors
and physical therapist and read books and books. We<span style="mso-spacerun: yes;"> </span>had<span style="mso-spacerun: yes;">
</span>medical dictionaries<span style="mso-spacerun: yes;"> </span>next to the
other books looking up words and definitions to make sense of the information
we were trying to absorb.)<o:p></o:p></span></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-4854313461683465222012-06-30T13:00:00.000-07:002012-06-30T13:02:03.144-07:00Food and Art in New Orleans<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Food and Art in New Orleans<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">We went to Manning’s Restaurant, Archie Manning’s Place, and
George Rodrigues’s Art Gallery…The “Blue Dog” guy….Brittany and I witness a
sale of a print that was frame. It was about the size of poster, 24x36
size.<span style="mso-spacerun: yes;"> </span>The sale purchase was
$10,000.00…..a print not original……Wow …I can only dream.<span style="mso-spacerun: yes;"> </span>It was pretty awesome……,Café Du Monde for
beignets.<span style="mso-spacerun: yes;"> </span>We went the French Open Market
and a quick stroll down the famous Bourbon Street…in the daylight with Dntake
‘s <span style="mso-spacerun: yes;"> </span>wheelchair at full speed as we
trotted close by.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">That night Lyndsey chose the restaurant for us on her
culinary knowledge.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>It is so fun having a certified chef in the
family.<span style="mso-spacerun: yes;"> </span>She chose a place called Cochons.<span style="mso-spacerun: yes;"> </span>Translated, this means pig in French.<span style="mso-spacerun: yes;"> </span>Lyndsey picked this restaurant based on the
menu and the story behind the chef. The chef, Donald Link, is a family man and
enjoys putting his experiences with his family and food into what he prepares.<span style="mso-spacerun: yes;"> </span>He<span style="mso-spacerun: yes;"> </span>is
an expert in<span style="mso-spacerun: yes;"> </span>charcuterie. For those out
there who are like me and need a translation…charcuterie is<span style="mso-spacerun: yes;"> </span>curing, preparing and making your own
sausages and meats. This chef owns the restaurant we were to eat and a deli
behind the restaurant all encompassed in a warehouse . The name of the deli
was, “Butcher.” We went inside the deli earlier the day before. A place<span style="mso-spacerun: yes;"> </span>definitely not for a devout vegetarian. <span style="mso-spacerun: yes;"> </span>For Lyndsey this was like entering a part of
her own little heaven. Meats were hanging from the ceiling<span style="mso-spacerun: yes;"> </span>in this restored old warehouse.<span style="mso-spacerun: yes;"> </span>Several rows of freshly prepared sausages and
meats adored the glass enclosed<span style="mso-spacerun: yes;"> </span>cases
that outlined the boundaries of the kitchen from the dining area. On the far
wall were cubbies with t-shirts with printed logos and sayings reflecting the
name of the deli . David had Lyndsey pick one out for her.(later in the week
she was going to wear her t-shirt but couldn’t because it reeked of curing meat
smells!) <span style="mso-spacerun: yes;"> </span>We also purchased one New
Orleans praline with chocolate covered BACON inside.<span style="mso-spacerun: yes;"> </span>The idea of this did not sound appetizing to
me but I had to try it. The praline the size of an average chocolate chip
cookie was divided among all of us to try a taste.. We all were chewing looking
at each other smiling waiting for the verdict of this strange concoction. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>WOW..It
was surprisingly amazing!!! <o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">We arrived for our reservation at the more upscale
restaurant (Cochon) and marveled at the interior of this old warehouse<span style="mso-spacerun: yes;"> </span>transformation. Lyndsey advised us on the
menu. We decided to all order something different and eat family style. We
could all taste different flavors of New Orleans.<span style="mso-spacerun: yes;"> </span>We had:<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">For appetizers:<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Alligator and boudin……..best ever of both… most .amazing
alligator I have ever had….so tender it melted in your mouth….The alligator was
Dake’s favorite.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Dake had Tasso a Duck Gumbo. Dake eat most of this but we
all got a taste…. It was very good which explains why Dake ate most of it.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">For the main course:<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Rabbit <span style="mso-spacerun: yes;"> </span>Dumplings: Lyndsey’s
favorite<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Fresh Red Fish: Brittany’s favorite<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Brisket: out of this world….<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Chicken Pasta: good but was simple.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Pork Ribs:<span style="mso-spacerun: yes;"> </span>Gracey’s
and my favorite.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">For sides: <o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">Macaroni and cheese casserole: Gracey’s second favorite<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="font-size: large;">And braised collard greens….they came in a close second to
Lyndsey’s who has the best.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">David’s favorite? … All of the
above.<o:p></o:p></span></span></div>
<span style="font-size: large;"><br /></span><br />
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<span style="font-family: Calibri;"><span style="font-size: large;">The trip was a full of adventure
and lots of great food and art.<o:p></o:p></span></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-31459805983608642142012-06-29T09:22:00.003-07:002012-06-29T09:26:28.395-07:00PART TWO of Swamp Tour<br />
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<u><span style="font-family: Calibri;"><span style="font-size: large;">Continue with the Swamp Tour….<o:p></o:p></span></span></u></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">As the long, bumpy creature surfaced above the water she
opened her huge mouth wide to catch a flying marshmallow, as big as a baseball,
thrown by the guide on the boat. Marshmallows??? Really??? He explained to us
the hibiscus flower grew wild in the bayou. Years ago the plant was called the
Mallow plant. The mallow plant grew in the marsh, which became the”
marshmallow” plant. <span style="mso-spacerun: yes;"> </span>The roots were used
to make a white sugary treats much like the marshmallow. Alligators would eat
the roots of the plants. So, this is why <span style="mso-spacerun: yes;"> </span>guide spends $35 a week to feed all the
alligators we meet that day….which were about twenty. These gators would come only
when he called their name one by one. He finished the tour by pulling an
alligator three years old from a cooler behind him. He past the gator around
and we all but Lyndsey held the alligator but she did admire her. (She said,
she did notthave time to prepare mentally to hold the alligator.)<span style="mso-spacerun: yes;"> </span>It was an awesome experience. The most
surprising part to Dake and I <span style="mso-spacerun: yes;"> </span>was how
soft she was to the touch.<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">When we finished the tour the <span style="mso-spacerun: yes;"> </span>guide <span style="mso-spacerun: yes;"> </span>recommended a place on bayou. His buddy had
for the best seafood around.<span style="mso-spacerun: yes;"> </span>As we<span style="mso-spacerun: yes;"> </span>exited the boat we chatted with<span style="mso-spacerun: yes;"> </span>him and got specific<span style="mso-spacerun: yes;"> </span>directions<span style="mso-spacerun: yes;">
</span>to his<span style="mso-spacerun: yes;"> </span>friend’s restaurant. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Let’s just say , “out in the boonies ‘has a whole new
meaning to us now. We arrived to a place one<span style="mso-spacerun: yes;">
</span>might call a “hole in the wall”. But as Brittany, my niece, pointed out
there were very few walls so she wasn’t sure she could even call it by that
name. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Looks sure<span style="mso-spacerun: yes;"> </span>can be deceiving.<span style="mso-spacerun: yes;"> </span>We devoured the best country low boil crab,
shrimp, and crawfish ever. Great Day!<o:p></o:p></span></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-31517604416830227232012-06-28T18:48:00.001-07:002012-06-28T18:48:20.994-07:00<br />
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<u><span style="font-family: Calibri; font-size: large;">First<span style="mso-spacerun: yes;"> </span>Night In New Orleans</span></u></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">The<span style="mso-spacerun: yes;"> </span>first night Dake
slept<span style="mso-spacerun: yes;"> </span>very little.<span style="mso-spacerun: yes;"> </span>So that means David and I slept very
little….especially<span style="mso-spacerun: yes;"> </span>David. Dake just
could not get comfortable.<span style="mso-spacerun: yes;"> </span>We
brought<span style="mso-spacerun: yes;"> </span>all his pillows and all the
sound<span style="mso-spacerun: yes;"> </span>machines but nothing worked.<span style="mso-spacerun: yes;"> </span>David and I repositioned him at least 20 or
more times that night. All of the above equals <span style="mso-spacerun: yes;"> </span>very grumpy, ill people.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Upon getting up the next morning, we had plenty of<span style="mso-spacerun: yes;"> </span>ugly, grumpy banter<span style="mso-spacerun: yes;"> </span>flying<span style="mso-spacerun: yes;">
</span>around. Spirits were down<span style="mso-spacerun: yes;"> </span>and we
had not even started our day. We headed to breakfast after my we gotta get it
together speech….(which usually does no good when the sleep deprived<span style="mso-spacerun: yes;"> </span>are my audience.)<span style="mso-spacerun: yes;"> </span>Remarkably, after<span style="mso-spacerun: yes;"> </span>a little<span style="mso-spacerun: yes;">
</span>food in our<span style="mso-spacerun: yes;"> </span>bodies<span style="mso-spacerun: yes;"> </span>and<span style="mso-spacerun: yes;">
</span>reviewing the schedule ahead, we seemed to shape up. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;"><u>New Orleans,<span style="mso-spacerun: yes;"> </span>The
Swamp Tour<o:p></o:p></u></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">Lyndsey had a swamp tour for us and had called ahead and
checked the accessibility beforehand<span style="mso-spacerun: yes;"> </span>so
we would not have any unpleasant surprises.<span style="mso-spacerun: yes;">
</span>This tour was family<span style="mso-spacerun: yes;"> </span>owned
business and the first impression<span style="mso-spacerun: yes;"> </span>gave
us that feeling of a personal touch. It felt like when you were a kid going to
church camp. At least a <span style="mso-spacerun: yes;"> </span>camp you have
been to for years. It was a good warm feeling with all the familiar smells. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;"><span style="mso-spacerun: yes;"> </span>We board the
pontoon like boat with no problems or trials….so we were all happy and ready
for the journey ahead. We were all hoping we would see an alligator and
exchanging<span style="mso-spacerun: yes;"> </span>exciting banter with each other
and the other passengers.<span style="mso-spacerun: yes;"> </span>The boat held
about 20 riders.<span style="mso-spacerun: yes;"> </span>Our tour guide
was<span style="mso-spacerun: yes;"> </span>a Louisianan<span style="mso-spacerun: yes;"> </span>of French<span style="mso-spacerun: yes;">
</span>decent whose family exiled<span style="mso-spacerun: yes;"> </span>from
Acadia, which is present day Canada.<span style="mso-spacerun: yes;"> </span>His
grandmother was<span style="mso-spacerun: yes;"> </span>an Acadian<span style="mso-spacerun: yes;"> </span>Indian and was a major part of his raising. <span style="mso-spacerun: yes;"> </span>He was rugged and rough around the edges .
His accent was as thick as the murky waters ahead.<span style="mso-spacerun: yes;"> </span>His school career was limited<span style="mso-spacerun: yes;"> </span>to<span style="mso-spacerun: yes;">
</span>third grade . But we would soon<span style="mso-spacerun: yes;">
</span>learn we<span style="mso-spacerun: yes;"> </span>would<span style="mso-spacerun: yes;"> </span>learn more from him than we would<span style="mso-spacerun: yes;"> </span>ever<span style="mso-spacerun: yes;">
</span>image…His classroom was the bayou.<span style="mso-spacerun: yes;">
</span>He told us he was offered a job at New Orleans University as a professor
In History of the bayou.<span style="mso-spacerun: yes;"> </span>(A course I
would definitely love <span style="mso-spacerun: yes;"> </span>to <span style="mso-spacerun: yes;"> </span>enroll.) <span style="mso-spacerun: yes;"> </span>He turned it down because he would have to
live in the city because his home is in the bayou! <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">As we cruised down the waters, our<span style="mso-spacerun: yes;"> </span>new Cajun friend <span style="mso-spacerun: yes;"> </span>calls out a name and clicks his teeth out the
side of his mouth . The “call” was like the friendly request one would use <span style="mso-spacerun: yes;"> </span>to<span style="mso-spacerun: yes;">
</span>retrieve your <span style="mso-spacerun: yes;"> </span>family dog. We all
are looking with great anticipation . Out of the murky waters a couple of
eyeballs popped up . Slowly, the<span style="mso-spacerun: yes;"> </span>eyes glide toward <span style="mso-spacerun: yes;"> </span>the tour guide’s end of the boat to reveal her
bumpy, long, rough looking <span style="mso-spacerun: yes;"> </span>body…..<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">To be cont’d……<o:p></o:p></span></span></div>
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<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-43677450427760605462012-06-27T14:33:00.001-07:002012-06-27T14:33:14.018-07:00Catching Up!<br />
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<span style="font-family: Calibri;">It has been awhile and it is time to catch up……..<o:p></o:p></span></div>
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<span style="font-family: Calibri; font-size: large;">In May we decide to take a quit break and we headed to New
Orleans. My niece Brittany joined us which is always fun having her on our
adventures. I booked the hotel but <span style="mso-spacerun: yes;"> </span>Lyndsey <span style="mso-spacerun: yes;"> </span>planned all the events and adventures which
made it so nice for David and me.<span style="mso-spacerun: yes;"> </span>We
stayed in the Arts District which was a happy surprise for me. When I booked
the place, I did not realize it was in the Arts District…(honest). We stayed at
the Embassy Suites to get a room with extra sofa bed. This should add to the
comfort and easement of the stay.<span style="mso-spacerun: yes;"> </span>We
arrived and a bell hop meet us as thou he was expecting us personally.<span style="mso-spacerun: yes;"> </span>He stayed with us as we were getting our room
keys. He notice we did not have a handicap room. (Rarely do handicap rooms come
with two beds but one and of course we need two beds and the sofa bed so we
figured we would figure it out when we saw how things were laid out.) He told
the desk clerk that we definitely need a handicap room and fix it right away.
WOW, never ever has anything like that happened to us. That someone other than
our group make a point to help with the handicap details. Of course ,we knew
the answer but the effort on his behave made me want to hug<span style="mso-spacerun: yes;"> </span>the big<span style="mso-spacerun: yes;">
</span>African <span style="mso-spacerun: yes;"> </span>American New Orleans
native. When the clerk replied the only ones available were<span style="mso-spacerun: yes;"> </span>single beds he<span style="mso-spacerun: yes;"> </span>insisted a chair for the bathtub be brought a.s.a.p.
to our room. Whoa…..I am in the twilight zone…..We always have to go buy a
chair when we are at a hotel for Dake<span style="mso-spacerun: yes;"> </span>to
be able to bath even if it was a handicap shower.<span style="mso-spacerun: yes;"> </span>( Dake ‘s core strength is so limited<span style="mso-spacerun: yes;"> </span>he has to have a plastic<span style="mso-spacerun: yes;"> </span>chair with arms or he will not be able to
hold himself up.)<span style="mso-spacerun: yes;"> </span>We barely got in the
door of the room and the chair was delivered.<span style="mso-spacerun: yes;">
</span>I was still in shock. It was like little <span style="mso-spacerun: yes;"> </span>fairies <span style="mso-spacerun: yes;"> </span>were two steps in front of us rolling out the
red carpet.<span style="mso-spacerun: yes;"> </span>I was ready to take up
residence forever</span></div>
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<span style="font-family: Calibri; font-size: large;">........Stay tuned more updates on the trip and life to continue soon.......</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6hTo0_uTRL-ndZWOKQLU9p-ZSu2JEMn8zyuZU7k-_pgCuGhwP314jffAgQti4RRDQDwRbV-o8pYiyShybPb35orFUkehgrHJas3_OfsG2gAXo8nVvyTNDK6wKfA98my0FJEMC-XAMdO6c/s1600/sir+daker.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6hTo0_uTRL-ndZWOKQLU9p-ZSu2JEMn8zyuZU7k-_pgCuGhwP314jffAgQti4RRDQDwRbV-o8pYiyShybPb35orFUkehgrHJas3_OfsG2gAXo8nVvyTNDK6wKfA98my0FJEMC-XAMdO6c/s320/sir+daker.jpg" width="262" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6473132937379369778.post-65628421758529543932012-04-25T09:25:00.000-07:002012-04-25T09:33:53.329-07:00 <span style="font-size: large;"> 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.</span><br />
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<span style="font-size: large;"><span style="font-size: large;">GRIP TEST:</span><br />
<span style="font-size: large;"> <u>hand six months /nine months</u></span><br />
<span style="font-size: large;"> right hand 6.5 7.9 </span><br />
<span style="font-size: large;"> left hand 4.6 5.4</span><br />
<span style="font-size: large;">PINCH TEST:</span><br />
<span style="font-size: large;"> <u> fingers six months / nine months</u></span><br />
<span style="font-size: large;"> right fingers 3.0 4.5 </span><br />
<span style="font-size: large;"> left fingers 1.5 4.0 </span></span><br />
<span style="font-size: large;"><span style="font-size: large;"> (this one is most exciting)</span><br />
<br />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!</span><br />
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<span style="font-size: large;">It was an EXCITING....AMAZING day. Thank you God!</span><br />
<br />Unknownnoreply@blogger.com0