tag:blogger.com,1999:blog-32598357189399930722024-03-04T22:06:48.278-06:00Our Exceptional LifeThe M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.comBlogger116125tag:blogger.com,1999:blog-3259835718939993072.post-3147891679064945622017-01-01T10:10:00.000-06:002017-01-01T10:10:55.383-06:00Dearest Friends, It Has Been Far Too Long<div dir="ltr" style="text-align: left;" trbidi="on">
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<span class="yiv8664923726s1"><br /></span></div>
<span class="yiv8664923726s1" id="yui_3_16_0_ym19_1_1483286200853_1821">In
all honesty, I haven't thought about writing (here or elsewhere) in a
while, but today I suddenly missed it...miss the outlet, and the chance
to share, but also miss the opportunity to take note and remember it
all, as it is happening, and for the future.<span class="yiv8664923726Apple-converted-space"> </span></span>
<div class="yiv8664923726p2">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">These days...</span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">I find myself still struggling with the polarity of our lives. How to
share the awesome, amazing parts of our lives, while still being real
about the challenges being faced, continues to befuddle me. How to give
each it's due without detracting from the other, is simply always a
challenge.<span class="yiv8664923726Apple-converted-space"> </span></span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">Perhaps this is
just how the days are...torn with tension. The quiet moments of grace,
and the sharp moments of disappointment that feel like they come too
frequently . Living in tension together daily. The celebrated and the
mourned. The heartache and hope. Hope filled prayers for healing, and
broken laments for that which we continue to face. And somehow one
doesn't cancel the other. Somehow, they live in some unique harmony that
allows for an exceptional existence.<span class="yiv8664923726Apple-converted-space"> </span></span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">I have been
painfully quiet. It sometimes feels like so much happens, so quickly,
with emotions ranging from one extreme to the other, that somehow
documenting it is impossible. And yet, this is our story, in all it's
glory and heartache, all rolled together and responsible for the
exceptional life we truly live.</span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">With
that...here I am again. For now at least. It has been 2 years and 6
months since my last post...and really, much longer since I have posted
regularly. I have made promises...mostly to myself...to post more
regularly, to find my voice again, to no avail. So, this time, I am just
going with it and we will see what happens!!<span class="yiv8664923726Apple-converted-space"> </span></span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">Just a little trip down memory lane first!!</span></div>
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<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p3">
<span class="yiv8664923726s1">January 1, 2011 marks the date of the first blog post here, and in the six years since....</span></div>
<div class="yiv8664923726p4">
<span class="yiv8664923726s1"></span><br /></div>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">Somehow, amazingly, we have surpassed 121,000 views here on our little space on the internet in that time!!<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">The kids have gone from 12, 14 and 17,<span class="yiv8664923726Apple-converted-space"> </span>to 18, 20 and 23!!</span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
moved from the only house that the kids had ever known five years ago,
fell in love with our new place, and officially became the owners of
"that place where we live" two years ago!!</span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have had the incredible joy of six more Wish Nights with so many people
we care about, celebrating and supporting our beloved Make A Wish
Foundation.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We have been blessed to add two new fur babies, as well as one scaly one, to the family...Sloane, the Chorky;<span class="yiv8664923726Apple-converted-space"> </span>Lexie, the tortoiseshell kitten; and Wilson, the yellow belly racer.</span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">All
three kids were honored for their volunteer efforts when they became
SuperStars three years ago, and we have been blessed to be able to
continue to attend the yearly black tie event, and see our precious
friends there!! Madison missed 2015 because of a hospitalization, but
was back for the fun this last year!!</span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have been blessed with six more trips to Seattle, and while it has not
always been as a whole family (Michael missed the trip in 2012 due to
his accident, and Madison in 2015 due to her health), it has continued
to be a place we love, and cherish, both because Camp Korey is there,
but also because of the family we have gained there. Madison's health no
longer allows for her to attend camp as a counselor, but Chance and
Abby continue to give back to this place that means so much to us, and
Madison gets the chance to at least touch the soil where so much love
exists. It hurts (painfully deep) that Madison isn't able to be a part
of camp anymore, but after not having her there with us at all in 2015,
just being able to physically have her with us when we go, major
equipment and all, as we did in 2016, gives you the perspective to
understand what's really important.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have added new medical equipment to the house, perhaps faster than
anyone would like, and while we sometimes curse its existence (usually
when it is alarming at 3:00am and needs attention), we are grateful that
these machines exist, and that we are able to get them and continue to
care for the kids here at home.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<span class="yiv8664923726s1"><span class="yiv8664923726Apple-converted-space"></span></span></div>
<div id="yui_3_16_0_ym19_1_1483286200853_1823">
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have repeatedly been blessed to have the kids friends come and stay
with us for a bit, and they are always good to keep the life and energy
going here!! From Hannah (RIP sweet girl) in Virginia, to Annie in
Oregon, to Jake in Virginia, to Daniel in Washington, these precious
souls continue to be a critical part of maintaining the joy. Love each
one of these young people, and we are so blessed to have them in our
lives!!</span></li>
</ul>
<span class="yiv8664923726s1"></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have, as a family, been blessed to be able to continue to give back to
the organizations that mean so much to us for another 6 years!! Our
efforts for the Make A Wish Foundation continue; I am 6 years into
serving on the Family Advisory Council at Cook Childrens; all three kids
have now served on, and graduated from, the Youth Advisory Council at
Cook Children's, and are now starting the process to serve there as
adults with the art and music program; and we have had the incredible
honor of representing Camp Korey, and sharing our story numerous times
now, and every chance we get. Being able to give back to the
organizations and people who have helped us continues to be perhaps the
biggest blessing in our lives, and we cannot wait to see what we can
accomplish in the coming year!!</span><span class="yiv8664923726s1"> </span></li>
</ul>
<ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have removed more than our fair share of diseased and dysfunctional
organs from family members in these six years, including Chance's entire
large bowel, Madison's gall bladder, (and soon, part of her small
bowel), and a bit more of McNair's small bowel, too. We have worked on
McNair's hip, put tubes back in Madison's ears, and did injections to
multiple body parts, on multiple people here!! Soon (as in this week), a
part of my disc at L4 will be snipped out, and allow my irritated nerve
at L5 to get a break!!<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<span class="yiv8664923726s1"><span class="yiv8664923726Apple-converted-space"></span></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">We
have traveled, sometimes for medical care, but almost as much for
escape and rejuvenation!! We have traveled to Houston, of course, as
well as Florida, New York, Seattle, and Austin. Even as each year the
process to get us to our destinations becomes more complicated, from a
medical perspective, (and if I am honest, even an emotional one), these
trips are so incredibly precious to us, providing needed respite, but
also memories to hang onto, and moments together as a family, and with
friends, that we acknowledge will not always be possible. There may be
no part of getting away that is easy, but the rewards are well worth the
effort, every time.</span></li>
</ul>
<span class="yiv8664923726s1"></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">In
these six years, there have been more doctors and therapy appointments,
procedures, surgeries, hospital stays, medications, and tests than I
can bear to go back and count. And at the same time, there has been more
life lived within these four walls than most. It is without doubt a
challenging existence, but it is an existence that is intentional, and
precious, and one I would choose again and again.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<span class="yiv8664923726s1"><span class="yiv8664923726Apple-converted-space"></span></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">In
these six years, each one of the kids has finished school, and are all
working on what their future is going to be!! Chance is working toward
becoming a Luthier (guitar builder). Madison's passion is photography,
and she is already award winning!! And Abigail dreams of somehow
utilizing all of her creative talents in some remarkable way, and in the
meantime is working a part time job at a bakery, gaining skills and
experience in the real world!! To have dreams and plans for adulthood is
such an incredible gift to all of us, and we cherish the opportunity to
think about, and plan for what is happening, and comes next.</span></li>
</ul>
<span class="yiv8664923726s1"></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">In
this time, we have lost some incredibly precious people to us,
including my grandmother, Michael's grandmother, multiple great uncles,
aunts, and dear friends. Our hearts have broken, time and again, and
with each time, our resolve to live this life to the fullest, with as
much love as possible, becomes paramount. We honor each of these
precious souls in this way.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<span class="yiv8664923726s1"><span class="yiv8664923726Apple-converted-space"></span></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">Six
more years of family traditions, including birthdays, Halloween
costumes, and time with family and friends at six more Thanksgiving's
and Christmas's. So incredibly grateful for these moments, and that they
continue to be important to us all.</span></li>
</ul>
<span class="yiv8664923726s1"></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">Six
more years of family and friends pitching in and helping us live this
exceptional life. From helping us move, to the incredible efforts made
for us after Michael's accident, to making camp possible for the kids
each year, to helping us get Madison's power chair, to making sure
things run smoothly here at home when I am taking care of someone in the
hospital, to assisting in the day to day activities our lives entail.
Precious family and friends that make sure we know we are loved, and
that our team is substantial, and with them, no obstacle is too big for
us to overcome. I pray each day that each one of you know how much you
have blessed us with your presence in our lives...in exactly the right
way, in exactly the right timing, as I like to say. Special thanks goes
out to my mom, who has sacrificed so much to help us over the years. We
literally could not have done what we have with this life if not for her
part in it. We love you mom, forever and always, and never could thank
you enough for all you have done. And special thanks to my sister for
being my best friend, and greatest cheerleader. Love you sis.</span></li>
</ul>
<span class="yiv8664923726s1"></span><ul class="yiv8664923726ul1">
<li class="yiv8664923726li1"><span class="yiv8664923726s2"></span><span class="yiv8664923726s1">Six
more years with my precious husband, and as a family of five. It never
escapes me how blessed we all are to still be in this together, and how
precious each moment is.<span class="yiv8664923726Apple-converted-space"> </span></span></li>
</ul>
<div class="yiv8664923726p2">
<span class="yiv8664923726s1"></span><br /></div>
<div class="yiv8664923726p1">
<span class="yiv8664923726s1">Thank you all
for being a part of our journey, and for the love and support you give. I
sincerely hope to share more, and to memorialize the amazing adventure
we are on together. Love and hugs to all!!! Merry Christmas & Happy
New Year!!!</span></div>
</div>
</div>
</div>
</div>
</div>
</div>
The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com1tag:blogger.com,1999:blog-3259835718939993072.post-4579492223303845732014-07-10T16:09:00.001-05:002014-07-10T16:09:06.160-05:00Blessed & Grateful: Superstars & Camp<div dir="ltr" style="text-align: left;" trbidi="on">
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<b>We have some exciting, awesome news to share!!</b></div>
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<span lang="RU" style="mso-ansi-language: RU;">My boy (whom I
really can no longer call a boy) has been </span>nominated<span lang="RU" style="mso-ansi-language: RU;"> to be honored in a very special way!! </span><o:p></o:p></div>
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<span lang="RU" style="mso-ansi-language: RU;">A few weeks ago I
got a call from our Palliative Care Social Worker to share that they </span>would
like<span lang="RU" style="mso-ansi-language: RU;"> to nominate Chance to be a part
of “<a href="http://nightofsuperstars.org/">The Night of Superstars</a>” in our area!! The Night of Superstars is an event
put together by an organization called <a href="http://Raganshope.com/">Ragan’s Hope</a>, and is a night to “<i>celebrate
the lives of those that change ours</i></span><span lang="RU" style="mso-ansi-language: RU;">”. </span><o:p></o:p></div>
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<span lang="RU" style="mso-ansi-language: RU;">From their
website…”<i>Night of Superstars is an “Oscar-like” red-carpet charity event
that draws numbers of local celebrities, high-profile personalities, media, and
hundreds of guests! This celebration is to honor the accomplishments of 20
amazing children, students and young adults in their respective geographical
areas who are affected by varying types of disabling conditions, yet reach far
beyond their adversities and excel in areas such as</i></span><i> academics,</i><span style="mso-ansi-language: RU;"><i> <span lang="RU">athletics, extracurricular
activities, the arts, and community service!</span></i></span>”. <o:p></o:p></div>
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Our social worker went on to explain that they thought
Chance was the perfect candidate because of his work at <a href="http://campkorey.org/">Camp Korey</a>, his time
with the Youth Advisory Council there at Cook Children’s, and most recently the
time he spends working with patients in the music studio there at the
hospital…and mostly because he does all of these things with such an incredibly
humble spirit. Chance is so incredibly touched, and deeply humbled to be
nominated, and we are just incredible proud and so grateful to have him honored in this way!! We will keep everyone posted on when and where this event
will be happening, but if you think you might want to be there for it, we do
know that the date is September 20<sup>th</sup>, and would LOVE LOVE LOVE to have
a whole crew of<span style="mso-spacerun: yes;"> </span>our people there
to share in this honor with us!!! So SAVE THE DATE!!<o:p></o:p></div>
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<b>And there is more</b>…we are cutting it close again this year,
but we finally have the go-ahead to get the kids to <a href="http://campkorey.org/">Camp Korey</a>!!!!<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxxU2fGnPBolA4-gAOzQR7K3i9msXrWMKuS5aaiJQfi6PpKI1enBxbYeZmOHsK1MNgDiYvedUaAoRWFtIGzfL92MEkTe3gTwduZSwVpflIY7ooFqNC5dMVVRtYd60Bzybpzfq6u9inH9k/s1600/CK13CKGlasses.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxxU2fGnPBolA4-gAOzQR7K3i9msXrWMKuS5aaiJQfi6PpKI1enBxbYeZmOHsK1MNgDiYvedUaAoRWFtIGzfL92MEkTe3gTwduZSwVpflIY7ooFqNC5dMVVRtYd60Bzybpzfq6u9inH9k/s1600/CK13CKGlasses.JPG" height="320" width="239" /></a></div>
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Medically, the last year has been busy, and at times disheartening.
All three are struggling, and have been for a little while, and our attempts to
get them back to a better place have been less than successful. It is at times
like these that we are reminded how blessed we are. Part of what gets them
through their tougher days, are the events and experiences we have been blessed
to be a part of each year. Wish Night in May was another incredible evening for
us all, and now we are a week away from going to <a href="http://campkorey.org/">Camp Korey</a> for what will no
doubt be another amazing, life changing week!!<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzo21nkP5iXP4UDlwKLLvsdneg4IlQaQoxXDUHvRXfPj8CPajfF1G40jXp69RKWoLhd1Vh8SZiGKeuZR35kqCLYSOsqFRbL28_uRl3mVgyyRXd8z3PAYTgvSmMCiKQ06IZjHkhbwU19uk/s1600/CK13AbMegField.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzo21nkP5iXP4UDlwKLLvsdneg4IlQaQoxXDUHvRXfPj8CPajfF1G40jXp69RKWoLhd1Vh8SZiGKeuZR35kqCLYSOsqFRbL28_uRl3mVgyyRXd8z3PAYTgvSmMCiKQ06IZjHkhbwU19uk/s1600/CK13AbMegField.JPG" height="213" width="320" /></a></div>
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I know I have said before how difficult it is to put into
words what this week in Carnation, Washington means to us. Try as I might,
I am still at a loss. This year will be Chance’s third year as Counselor,
Madison’s second as an LIT (Leadership In Training), and Abby’s first year as an LIT!! The opportunity
to be leaders is there for all three, more than ever before, and I can hardly
wait to hear all about their week as life changers for others too. Such an
amazing gift to be able to give back in this way!! I cannot begin to express
our gratitude for the opportunity to be a part of the <a href="http://campkorey.org/">Camp Korey</a> family.</div>
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More, I cannot begin to express my gratitude to you all…the
people who make it possible for us to be there!!<span style="mso-spacerun: yes;"> </span>If not for you and your help, this
would not be possible. In a life where finding opportunities like this for our
children are rare, having this opportunity each summer to look forward to makes
all the difference in the world. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__8DVO3j3FsHuyjDoIgiVYRlLcZpqjzVGmCtHZShWcdLGCMZgkPZFWSDfjSq2I6372byNlO8qHZHahOdF25Dr8hltj_AOQZTHtqkmy36iGQh7V5f9jEpP0nqWaSF-GBOzhDsUcgPaK2s/s1600/CK13KidsAlki.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__8DVO3j3FsHuyjDoIgiVYRlLcZpqjzVGmCtHZShWcdLGCMZgkPZFWSDfjSq2I6372byNlO8qHZHahOdF25Dr8hltj_AOQZTHtqkmy36iGQh7V5f9jEpP0nqWaSF-GBOzhDsUcgPaK2s/s1600/CK13KidsAlki.JPG" height="240" width="320" /></a></div>
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Getting the go-ahead to go to Camp this year has been as
challenging as ever, and thus our late start fundraising. If you feel led, any
contribution you can make is insanely appreciated. <o:p></o:p></div>
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Donations can be made at <a href="file:///mcnaircampfund">https://www.youcaring.com/mcnaircampfund</a>
or at the link in the right sidebar.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc0kcTm68durdcQ04roOfzkAFd8I21mA1WTi2LAfe1_vyph6XwWF1UTILvUT3QXpsCW5EsXwB9GlsrodkQpyWKUzd8xEhLtn6C00dp6urXxvpuv4-3jABtRyxo2RhSJfaTZqTuFWng4Vw/s1600/CK13LITsAb.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc0kcTm68durdcQ04roOfzkAFd8I21mA1WTi2LAfe1_vyph6XwWF1UTILvUT3QXpsCW5EsXwB9GlsrodkQpyWKUzd8xEhLtn6C00dp6urXxvpuv4-3jABtRyxo2RhSJfaTZqTuFWng4Vw/s1600/CK13LITsAb.JPG" height="240" width="320" /></a></div>
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We are so very blessed to have each and every one of you in
our lives. Thank you for being our village, and for loving us as we are. You
all provide the greatest of gifts to us in this way everyday, and we love you
for it.<o:p></o:p></div>
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BIG hugs,<o:p></o:p></div>
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The McNair’s<o:p></o:p></div>
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Michael, Heather, Chance, Madison & Abigail<o:p></o:p></div>
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The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-83937712188270490602014-05-10T01:42:00.000-05:002014-05-22T10:31:00.924-05:00Selfies with John Green…Yeah, That Happened<div dir="ltr" style="text-align: left;" trbidi="on">
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And fist bumps (complete with teaching Mr. Green the jelly
fish add on). And hugs. And autographs. And …getting the chance to tell someone
that their creation has touched you deeply.</div>
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Yeah…that all really did happen tonight!!<o:p></o:p></div>
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<span lang="RU" style="mso-ansi-language: RU;">Earlier
tonight, I posted the following on FB: </span><o:p></o:p></div>
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<span lang="RU" style="mso-ansi-language: RU;">“<i>The Fault in
Our Stars author & actors meet and greet.....there is an amazing, wonderful
story to tell for why </i></span><i><span lang="RU" style="font-family: Helvetica; mso-ansi-language: RU;"><a href="file:///RadiateLove1996"><span style="color: windowtext; font-family: "Times New Roman"; text-decoration: none; text-underline: none;">Madison</span></a></span><span lang="RU" style="mso-ansi-language: RU;"> and I are here. Will share tonight...right now I am going to stand here
watching my precious daughter have the night of her life. Life really is so
good!!! — at <a href="file:///SouthSideBallroomDallas"><span style="color: windowtext; text-decoration: none; text-underline: none;">South Side
Ballroom</span></a>.</span></i>”<o:p></o:p></div>
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At the time, the story, while amazing, was still actually
short enough to share on FB…Not so much anymore. <o:p></o:p></div>
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A while back now, Madison found and fell in love with the
book, “The Fault in Our Stars”, by John Green. It was a story she could relate
to….characters that are her age, medical issues, oxygen, bipap, wheelchairs,
g-tubes, and the list goes on. The book touched her deeply, and she became a
huge fan of John Green. Like a huge fan!! Heck, she even had this book as the
theme of her birthday party last year!! She was SO excited when she heard that they were making a movie based on the book, and has been talking about, and
anticipating the opening (June 6) ever since.<o:p></o:p></div>
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As part of the movie promotion, a Tumblr contest was held
to pick the four cities Mr. Green and the actors, Shailene Woodley (Hazel
Grace), Ansel Elgort (Augustus Waters), and Nat Wolff (Isaac) from the movie
would visit this week to kick things off, and Dallas was one of them. So a week
or so ago, Madison asked about going and I told her we would play it by ear.<o:p></o:p></div>
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I desperately wanted her to be able to do this. It’s been
a rough few months and she so needed something like this to give her spirit a
lift, but when I asked about it again this week, she said she had heard it was
drawing huge crowds and she didn’t think it was something she could probably
do. <o:p></o:p></div>
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My heart sank.<o:p></o:p></div>
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And in that moment of desperation to find some way to make
this happen for her, I went to John Green’s website, found a contact person,
and composed an email that I sent on Wednesday. I shared a little of Madison’s
story, and a lot about how much she loves this book, and then hit send and
figured I wouldn’t hear anything back. It was just 2 days before the event
after all, and I wasn’t even sure there would be time for them to see the
email, much less respond to it. And I didn’t say a word about it to Madi. I
knew the odds were against us, and didn’t want her to be disappointed.<o:p></o:p></div>
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I checked my email regularly. Just in case. And hadn’t
heard a word.<o:p></o:p></div>
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Madi and I walked in the house late this afternoon after a
long day, that ended a really, really, really long week. All I could think
about was sleeping as soon as possible, and Madi was about the same. <o:p></o:p></div>
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And then my phone rang, and I didn’t recognize the number.
Normally, I’d ignore the call, but something made me answer it.<o:p></o:p></div>
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It was “Josh”, with The Fault in Our Stars (TFIOS) crew,
and he asked if Madison and I were there at the venue yet!! I told him we
weren’t, and he went on to say that he had a VIP pass waiting for us, and to
call when we got there and he would get us situated!!!!!<o:p></o:p></div>
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OMG!! OMG!! OMG!! OMG!!<o:p></o:p></div>
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I so badly wish I had captured Madison’s face when I told
her she had to get ready because we were going to the TFIOS meet & greet,
and we had VIP passes waiting for us!! It was absolutely priceless, and
something I will think of to make me smile forever!! She was OVER THE MOON!!!<o:p></o:p></div>
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We rushed out the door and to the venue, where there were
literally thousands of young people circling the block waiting to get in…it was
INSANE!! We made our way to meet Josh, got our VIP arm bands, and were escorted
in to a special section just to one side of the stage, but with an amazing view
of what was going on. Madi and I just kept looking at each other in disbelief!!
<o:p></o:p></div>
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My precious girl was SO happy…and so, I was about as happy
as I could be.<o:p></o:p></div>
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We got to see a sneak peak of the movie, and then watch as
Mr. Green and the actors answered questions. Their enthusiasm was contagious,
and all four endeared themselves to us all (Ansel even did some break dancing
for us!!). It was an amazing hour, and it was so cool to have been able to be a
part of this special event. There was something like 3000 fans in the room, and
it was loud and full of energy!!<o:p></o:p></div>
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And then we found out there was more…the small group of
maybe 20 in the VIP area were going to be taken back stage to meet Mr. Green
and the actors for autographs!! We had NO IDEA, and were again pinching
ourselves to make sure we were not dreaming!! Seriously, how in the world could
this just keep getting better!?!?<o:p></o:p></div>
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And yet, it did. It got amazingly better.<o:p></o:p></div>
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We made our way back, and as soon as we were in the room
back stage, we had the chance to meet the lady that had ultimately gotten my
email just TODAY!! She kept thanking US for coming, and telling me how much it
meant to them, and all I could say was that we needed to thank them!! It was a
HUGE honor to be there!! <o:p></o:p></div>
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Mr. Green was incredibly gracious, and spent some time
talking with Madi, which thrilled her like nothing I have seen before!! In
fact, while I might have thought that she would be at least as excited to meet
the young men involved in the movie, she truly was most deeply touched by her
encounter with Mr. Green. And then I had a chance to thank him….for writing
this book that means so much to my daughter, and for giving us the opportunity
to be a part of this evening, and for making my girl feel as special as she is.<o:p></o:p></div>
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There we photos taken, autographs (with ad libs) done, and
an incredible moment that neither Madison nor I will forget anytime soon.<o:p></o:p></div>
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And then…as they gathered this small group of VIP’s
together for a photo, Mr. Green & the actors joined the group, and he got
right next to Madison for the photo. Then there was a fist bump, then HE TOOK A
SELFIE WITH MADISON ON HIS PHONE, then he asked for her Instagram name and
allowed HER to put it in his phone for him, and then I got a hug, and then
Madison did!!!!<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaGozlOUvQX9pEuWHx0WYAxWLsdBhBdXtjgEq7vxtDFiOZ8xYMlNkdinQn0VX2gJEwBIqTkFGPMHEtJxLUSwPMEcJuVSfdlE6D6FmloooSqsS8noSVOA6Co6IJb41MeM-oqH8Q5pl9dk/s1600/IMG_7429.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaGozlOUvQX9pEuWHx0WYAxWLsdBhBdXtjgEq7vxtDFiOZ8xYMlNkdinQn0VX2gJEwBIqTkFGPMHEtJxLUSwPMEcJuVSfdlE6D6FmloooSqsS8noSVOA6Co6IJb41MeM-oqH8Q5pl9dk/s1600/IMG_7429.JPG" height="240" width="320" /></a></div>
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Our cheeks hurt from smiling, and we kept literally
pinching ourselves as we made our way home. I earned the “Mother of the
lifetime” award this evening per Madi…<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
More…I saw my girl smile, and be happy, and love life
tonight. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
So, so, so incredibly grateful. An exceptional life
indeed.</div>
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The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com2tag:blogger.com,1999:blog-3259835718939993072.post-22005652180143489952014-03-05T19:51:00.000-06:002014-03-05T19:51:18.664-06:00“You’re Here Too Much”<div dir="ltr" style="text-align: left;" trbidi="on">
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<i>After spending all morning at Cook's today for Madison to have a procedure done, I remembered that I had written this post and in my busyness, failed to post it back in November when it was written. Working on getting back into the swing of things here on the old blog. It may take a little different direction from here, but it desperately needs to be revived.</i><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4n3F2WKBaqaMwZAd7Bpt0HaeOxtHyQw4eQ1cquFt_lynTfnMLX4-0u8FI6e1M7ik8vLn3btkmodcgXZlx_p9B4BJrLl0TCVU7nVTIK5AR5xeTduiIEXpYzWlo8SFXkz7mcF9qMRb2b5U/s1600/CooksFront.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4n3F2WKBaqaMwZAd7Bpt0HaeOxtHyQw4eQ1cquFt_lynTfnMLX4-0u8FI6e1M7ik8vLn3btkmodcgXZlx_p9B4BJrLl0TCVU7nVTIK5AR5xeTduiIEXpYzWlo8SFXkz7mcF9qMRb2b5U/s1600/CooksFront.jpg" height="220" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cook Children's Hospital<br />Ft. Worth, Texas</td></tr>
</tbody></table>
<i>November 2013</i><br />
<i><br /></i>
<br />
<div class="MsoNormal">
Cook Children’s, compared to other children’s hospitals
we have been in, is medium sized and laid out in such a way that we run into many
of the same people in the hallway, regularly. It is also...probably because of
this main hallway concept...a place where we see not just our nurse’s and child
life specialists, but also our doctors. It’s also an incredibly friendly place,
so these amazing professionals don’t hesitate to stop and say hello.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-27QmSNOJLcm7grFiaGJ6NiPCUvDDUWIHlvy0m414e7w-vHyPSROyrZuv7KXBW3cQUwv5a1XZTzmOEegxHSZ62FOjNx8ydkaf_Zu4M0LdKZxhmw6qFFdC4ShPVSrPfETHwMZgWDx4OiM/s1600/CooksGarthChanel.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-27QmSNOJLcm7grFiaGJ6NiPCUvDDUWIHlvy0m414e7w-vHyPSROyrZuv7KXBW3cQUwv5a1XZTzmOEegxHSZ62FOjNx8ydkaf_Zu4M0LdKZxhmw6qFFdC4ShPVSrPfETHwMZgWDx4OiM/s1600/CooksGarthChanel.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Occasionally see celebrities too!! <br />Garth Brooks with Chanel, <br />one of two therapy dogs now in residence<br /> at Cook Childrens</td></tr>
</tbody></table>
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<div class="MsoNormal">
The truth is, we spend a lot of time there, wandering the
halls from point A to B, and sometimes just wandering as we kill time between
appointments. Add in our volunteer time, and yeah…</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are there frequently, and we see some of the same people
in passing more than others, with our Palliative Care doctor being one of them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He always smiles and acknowledges us, and always appears to
be on a mission to get somewhere expediently, so we smile, say hi, and move
on.<span style="mso-spacerun: yes;"> </span>This week though, the comment
was not “Hi, nice to see you.”, it was…</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“You’re here too much.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And the truth is, I couldn’t read the intent behind it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As in, was he saying this out of concern for us? Was it
directed at me in an accusatory way? Or, was it just an observation? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I really don’t know.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the time my thought was, HA!! You have no idea!! We see
him, in passing maybe once every 4 or 5 times we are there. And even if, out of
curiosity, he’s checked the schedule to see what it looks like, he doesn’t know
about the times we are there for volunteer activities, or unexpected appointments.
He really doesn’t have a clue how much we are really there.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then I wonder, what if he did actually realize how much
we are there? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The truth is, this schedule we are keeping is not happening
without contemplation. There is a rhyme and reason if you will, and while it
remains something that should be regularly re-evaluated, there is little that
happens in our lives that I have not considered in great detail.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Early last year we were in a difficult place. Madison was
quite unwell and really needed to be inpatient, however, the specialists we
needed to be involved were at two different hospitals here in town, and our
pediatrician and I spent hours contemplating what was the best course of
action. Ultimately <b>I</b><span style="font-weight: normal;"> decided that we
honestly did not have a place to go where her needs could truly be met…where I
was not likely to be insane from the experience, and most likely bringing her
home no better than she went in. I realized in that moment that while our way
of doing things had worked remarkably well for a long time, we were moving into
a place in this journey where having a “home hospital” was critical to the kids
care. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will always be split to some extent, with our Houston
team needing to be a part of what is going on, but here locally, it was time to
commit. Our local team was too scattered, and as coordination of care became
more important, this scatter was hurting us, not helping us. We needed to pick
a “team” and go for it, as scary and overwhelming as that seemed at the time.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So as I cared for my daughter here at home, with the support
and guidance of our pediatrician, I formulated a plan to slowly and
deliberately start building our team at Cooks. We already had some awesome, key
doctors there, and it is definitely the hospital I prefer being in if we need
to spend some time inpatient. So while not the closest hospital, and not the
hospital our beloved pediatrician has privileges at, for a whole host of
reasons, it is where we need to be.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjse4OuZaiIWfGZORpJQPbjO1ng2H5gUcRSHJrrSNpTAH1CCfPLZE2hWVLWd5m8HUfGLGCVySCOJWGo6NRU7i-O-4MkLVhrqgBx6nMe6ojYCbgFS5L_63pVJZJo_xlA72I6_eB8fCYChI/s1600/CooksIronGirls.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjse4OuZaiIWfGZORpJQPbjO1ng2H5gUcRSHJrrSNpTAH1CCfPLZE2hWVLWd5m8HUfGLGCVySCOJWGo6NRU7i-O-4MkLVhrqgBx6nMe6ojYCbgFS5L_63pVJZJo_xlA72I6_eB8fCYChI/s1600/CooksIronGirls.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Iron infusions x 2</td></tr>
</tbody></table>
<!--[endif]--><br />
<div class="MsoNormal">
This decision comes with sacrifices (don’t they all), and in
this case, we went into it knowing it meant more time on the road, being
further from home, for more hours than we had been. It meant being patient as I
worked with schedulers and found ways to get more than one appointment
scheduled in a day to make it a more worthwhile trek. It meant building a
support system there that allows us to incorporate the fun, worthwhile things
to do as we accomplish the medical side of our lives.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmb57oyBykESokn-YdZGbnNCVJODiVQfOGKJjlfs6fe2pnHcCFYA4DHQ4jImXObUj0tvh2l_K3s6zzT0QXaYUtfi9HoQpLkwijIYwfltyO0B1zV5F1rrSf1TjSB03l3S4-MqLWcRKCtEg/s1600/CooksWallLength.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmb57oyBykESokn-YdZGbnNCVJODiVQfOGKJjlfs6fe2pnHcCFYA4DHQ4jImXObUj0tvh2l_K3s6zzT0QXaYUtfi9HoQpLkwijIYwfltyO0B1zV5F1rrSf1TjSB03l3S4-MqLWcRKCtEg/s1600/CooksWallLength.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Construction wall the kids have helped paint</td></tr>
</tbody></table>
<o:p></o:p><br />
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</div>
<!--[endif]--><br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: 13px;"><i>story at <a href="http://dfw.cbslocal.com/2014/01/16/young-old-transform-construction-zone-into-art-masterpiece/">http://dfw.cbslocal.com/2014/01/16/young-old-transform-construction-zone-into-art-masterpiece/</a></i></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: 13px;"><i><br /></i></span></div>
<div class="MsoNormal">
This decision also comes with some awesome advantages!! Some
we have seen, some we are still working on, but the potential is there. It is
truly becoming our “home hospital”, in more ways than it being where the bulk
of our doctors are…</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><i>and this is vitally important</i><span style="font-style: normal;">. </span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>This place, where there is the potential of spending hours
per week, needs to be more than just a building and medical professionals…needs
to be more than just a place where we know we can get good quality care.
Unknowingly at the time, I have come to realize that a “home hospital” needs to
be a place where…wait for it…</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><i>we feel AT HOME</i><span style="font-style: normal;">. </span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjESzhfD04p0U7HKITAI67T7_60p1rdSFUY4j1gIyecIoPJiMXZj9bTCUzltYV-gNcOfuQLKVIaCk2KBATY6dFFpdaRzKb9O1JT512oxRjyZr0twrYqr3WiGO7zAhQtlks6D6oicKWuJQg/s1600/medicalhomeimage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjESzhfD04p0U7HKITAI67T7_60p1rdSFUY4j1gIyecIoPJiMXZj9bTCUzltYV-gNcOfuQLKVIaCk2KBATY6dFFpdaRzKb9O1JT512oxRjyZr0twrYqr3WiGO7zAhQtlks6D6oicKWuJQg/s1600/medicalhomeimage.jpg" height="240" width="320" /></a></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Where there is, at least potentially, more to be had from a
visit there than good medical information (as vitally important as that is). As
strange is it may be to contemplate for most, the reality is, when you spend
half or more of your life in the medical world, it’s in the medical world that
you find your friends. </div>
<div class="MsoNormal">
<br /></div>
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<br /></div>
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The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-76194459705925226012013-11-10T14:01:00.000-06:002013-11-10T14:01:23.869-06:00Back in the Saddle & Leaning In<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHQbCQn0nmXmOYCDHNGnF5A9b8Hv1AUNoeoKN1BHiZO5y6MM3BMpdVsOaF9qXHFDch1I_p4fcYLCfIlIir7JviluGtZzz0uFZQYarVSzWO0cL8ZcA0NfHoT6K_EwyksiDhKcDB1ObIo90/s1600/you-can-do-it.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="226" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHQbCQn0nmXmOYCDHNGnF5A9b8Hv1AUNoeoKN1BHiZO5y6MM3BMpdVsOaF9qXHFDch1I_p4fcYLCfIlIir7JviluGtZzz0uFZQYarVSzWO0cL8ZcA0NfHoT6K_EwyksiDhKcDB1ObIo90/s400/you-can-do-it.jpg" width="400" /></a></div>
<br />
<div class="MsoNormal">
I wanted to be a part of a group of bloggers writing
something every day for November, but alas, here I am, 10 days in and it hasn’t
happened. My intentions were good, but I knew with the month starting off in Houston for appointments for a week, it wasn’t likely to happen. Let’s face it,
intentions are only half of what it takes to accomplish something. I <i>need</i><span style="font-style: normal;"> the motivation though, and am still going to try to
make a stab at publishing on more days than not for the rest of the month. Lord
knows, it’s not from a lack of experiences to share!!<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am missing my time here. I am missing the chance to “get
it out” and move on. I am missing the chance to share some of the really
awesome things happening for our family. So here we go. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although my inclination, at moments, is to run away, I am
instead, <i>leaning in</i><span style="font-style: normal;">. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to finding
a solution to our medical coordination woes. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to
enjoying the fun things we have happening, almost as often as the "not
fun" things, and to the precious people in our lives that make them
possible. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to finding
a balance again in our lives. Working real living in AROUND our medical lives
is NOT the way this works best! <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to our
volunteer opportunities, and making them as much a priority as all the rest,
because they really MEAN something in our lives, and others. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to the
learning that comes with new ways to help the kids medically, and praying for
the time and energy to give them a chance to work. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to the
opportunity to share the knowledge we have gained after so many years in this
medical world, and, God willing, leaving a legacy for others. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Leaning in</i><span style="font-style: normal;"> to working
on being the best mother/wife/sister/daughter/granddaughter/friend I can be. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On this list of items worth <i>leaning in</i><span style="font-style: normal;"> to, is this blog. It's part of the balance thing.
It's worth my time and energy. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Silence very seldom means nothing is going on over here, and
actually means quite the contrary. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Silence often means, you wouldn't believe it if I actually
wrote it out! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Lots to update on....some awesome and amazing stuff, some
not so fun stuff, and lots in between. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Leaving you with much love and hugs. We are good...crazy
busy, but good. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just need to keep <i>leaning in</i><span style="font-style: normal;"> to this exceptional life we have been given!!</span><br />
<span style="font-style: normal;"><br /></span>
<i>As the holidays approach, where are you finding the need to lean in?</i></div>
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The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com4tag:blogger.com,1999:blog-3259835718939993072.post-79809036071917987832013-08-16T11:12:00.002-05:002013-08-16T11:12:32.353-05:00Mito & Disability Benefits: Guest Post<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: inherit;">One of the more daunting things I have had to face when it comes to my children's needs has been finding what benefits might be available, and then applying for them. When there is already so much going on in every day life to support a medically complex/special needs child, adding in a bunch of paperwork, and navigating an unfamiliar system can be overwhelming. It is worth the effort, and there is help out there to take some of the mystery out of the process.<br /><br />Molly, at <a href="http://www.disability-benefits-help.org/">Social Security Disability Help</a> (<a href="http://www.disability-benefits-help.org/" id="yui_3_7_2_1_1376667108133_2034" style="outline-color: initial; outline-style: initial; outline-width: 0px; text-decoration: underline;" target="_blank"><span class="yshortcuts" id="lw_1376667105_1">http://www.disability-benefits-help.org/</span></a>), contacted me recently to ask if I would allow her to contribute to my blog with an article that could be helpful to my readers, and I jumped at the chance to have someone far more knowledgable than I to share this information. I have some additional information to share at the end of her article regarding Waiver programs, and some personal "words of wisdom". </span><br />
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<span class="Apple-style-span" style="font-family: inherit;"><b><i>Applying for Disability Benefits for Your Child with a
Mitochondrial Disorder<o:p></o:p></i></b></span></div>
<span class="Apple-style-span" style="font-family: inherit;">
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<i>According to the United Mitochondrial Disease Foundation,
mitochondria produce about 90 percent of the energy that the human body needs
in order to function. There are many different diseases and illnesses that
affect human mitochondria. Mitochondrial disorders affect people in varying
ways and often cause a host of severe health complications. </i></div>
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<br /></div>
<div class="MsoNormal">
<i>Although adults can develop mitochondrial diseases later on
in life, many individuals are either born with mitochondrial disease or develop
it within the first ten years of their lives.<span style="mso-spacerun: yes;"> </span>Caring for a child with mitochondrial disease comes with a
unique set of responsibilities and challenges. Among these challenges is the
added expense of specialty medical treatments, supportive care, and assistive
technology. Although many of these things are required to keep a child with
mitochondrial disease comfortable and healthy, they can also be very costly.</i></div>
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<br /></div>
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<i>If your child has mitochondrial disease, you may qualify for
Social Security Disability (SSD) benefits on his or her behalf. These payments
can be used to provide your child with the things they need to live the
healthiest lifestyle possible. </i></div>
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<br /></div>
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<b><i>Is My Child Disabled?<o:p></o:p></i></b></div>
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<i>To qualify for any type of SSD assistance, your child must
have a documented disability. The Social Security Administration (SSA)
considers children disabled if they meet the following criteria:</i></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->Your child does not earn a substantial income </i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->Your child has a physical or mental condition that
significantly limits his or her daily activities</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->Your child’s condition is expected to last at least one
year or result in death. <o:p></o:p></i></div>
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<br /></div>
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<i>In addition to meeting these criteria, your child must also
meet very specific technical and medical requirements. </i></div>
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<br /></div>
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<b><i>Social Security Disability Insurance<o:p></o:p></i></b></div>
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<i>The SSA runs two separate programs that provide benefits to
individuals with health conditions and disabilities. The first program—Social
Security Disability Insurance (SSDI)—offers benefits to disabled workers and
their families. Because eligibility for SSDI is based on taxes and work
history, many children and young adults cannot qualify on their own record. </i></div>
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<br /></div>
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<i>However, if a parent or guardian already receives SSDI, a
child may be eligible to receive benefits on the qualified parent’s record. It
is important to note that, if your child is over 18 but became disabled before
22, he or she is considered an “adult child”. Adult children may also qualify
for SSDI on an eligible parent’s record.<span style="mso-spacerun: yes;">
</span>This type of payment is called auxiliary or dependent benefits. You can
learn more about this here:<span style="mso-spacerun: yes;"> </span><a href="http://www.disability-benefits-help.org/glossary/auxiliary-benefits">http://www.disability-benefits-help.org/glossary/auxiliary-benefits</a>.
</i></div>
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<b><i>Supplemental Security Income<o:p></o:p></i></b></div>
<div class="MsoNormal">
<i>The second disability benefit program is called Supplemental
Security Income, or SSI.<span style="mso-spacerun: yes;"> </span>SSI
benefits are paid to elderly or disabled individuals who earn very little
income. SSI has no tax or work-related requirements. For this reason, SSI is
often the best option for young adults or children who haven’t had the
opportunity to work or pay taxes. </i></div>
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<br /></div>
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<i>To qualify for SSI, applicants cannot exceed very strict
financial limits that are put in place by the SSA.<span style="mso-spacerun: yes;"> </span>When an applicant is under 18, a portion of his or her
parent’s income will be evaluated to determine whether or not he or she is
eligible. This process is called deeming. To find out what types of income are
deemed and what types are not, visit this page: <a href="http://www.socialsecurity.gov/ssi/spotlights/spot-deeming.htm">http://www.socialsecurity.gov/ssi/spotlights/spot-deeming.htm</a>.<o:p></o:p></i></div>
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<br /></div>
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<i>Once your child turns 18, or if he or she is already 18, the
SSA will only count his or her income to determine eligibility for SSI. <o:p></o:p></i></div>
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<br /></div>
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<b><i>Medical Requirements <o:p></o:p></i></b></div>
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<i>In addition to the previously mentioned technical
requirements, your child will also have to meet very specific medical criteria.
These medical criteria are listed in the SSA’s blue book—the official list of
potentially disabling conditions and qualifying criteria. There are many
different mitochondrial diseases and not all are listed in the SSA’s blue
book.<span style="mso-spacerun: yes;"> </span></i></div>
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<br /></div>
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<i>If your child’s condition is listed in the blue book, there
will be a list of very specific medical requirements that you must be able to
document in order to qualify. If your child’s condition is not listed in the
blue book, he or she may still be able to qualify if their symptoms closely
match those of another listing. <span style="mso-spacerun: yes;"> </span>Depending
on your child’s specific symptoms, he or she may qualify based on the following
listings:</i></div>
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<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->100.00-100.03- Failure to Grow</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->111.00-111.09- Neurological (covers motor dysfunction
and seizure disorders)</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->112.00-112.12- Mental Disorders (covers autism spectrum
disorder and developmental delays)</i></div>
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<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->102.00-102.11- Special Senses and Speech (includes
vision and hearing problems)</i></div>
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<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->104.00-104.13- Cardiovascular</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->105.00-105.10- Digestive System (covers liver disease
and gastrointestinal disorders)</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->109.00- Endocrine (diabetes)</i></div>
<div class="MsoNormal" style="margin-left: .5in; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><i><span style="font-family: Symbol;">·<span style="font: 7.0pt "Times New Roman";">
</span></span><!--[endif]-->106.00-106.07- Genitourinary (kidney disease)</i></div>
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<i>It is very important that you collect thorough medical
documentation of each of your child’s symptoms prior to submitting his or her
application for disability benefits. Documentation should include records of
his or her diagnosis, lab test results, history of hospitalizations, response
to any treatments, and any other relevant information. You should also collect
written statements from any professional adults who interact with your child on
a regular basis. This can include teachers, doctors, therapists, or coaches.
Each statement should outline your child’s symptoms and how they interfere with
his or her daily activities.<span style="mso-spacerun: yes;"> </span>The
SSA requires these records as proof of your child’s illness. Without these records,
it is not likely that your child will be approved. For a complete list of the
documentation you will need, see the Child Disability Checklist- <a href="http://www.ssa.gov/disability/Documents/Checklist%20-%20Child.pdf">http://www.ssa.gov/disability/Documents/Checklist%20-%20Child.pdf</a>.
</i></div>
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<b><i>Compassionate Allowance Listings<o:p></o:p></i></b></div>
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<i>The typical application process can take months to complete.
The SSA recognizes that individuals with certain conditions cannot be expected
to wait the standard processing times. For this reason, the SSA allows people
with severely disabling conditions to be approved for benefits in as little as
ten days. This is called the Compassionate Allowance (CAL) program.<span style="mso-spacerun: yes;"> </span>Fortunately, certain mitochondrial
disorders are included among the conditions that qualify for compassionate
allowances processing—including Pearson Syndrome, Alpers Disease, NFU-1
Mitochondrial Disease, MERRF, and Leigh’s Disease. To qualify for CAL
processing, you do not need to fill out additional paperwork. The SSA will
evaluate your child’s claim and expedite it accordingly. </i></div>
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<br /></div>
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<b><i>The Social Security Disability Application Process<o:p></o:p></i></b></div>
<div class="MsoNormal">
<i>Once you have collected the necessary documentation and feel
ready to begin the application process, you will be required to complete two
different forms—the “Application for Supplemental Security Income” and the
“Child Disability Report”.<span style="mso-spacerun: yes;">
</span>Although you can complete the Child Disability Report on the SSA’s
website, many applicants prefer to schedule an appointment to complete both
documents in person. </i></div>
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<br /></div>
<div class="MsoNormal">
<i>It is important to remember that the application process for
disability benefits is not simple and straight forward. In fact, many initial
applications are denied. If your child’s initial application is denied, do not
panic and do not give up. You are allowed to appeal this decision. Although the
process can be difficult to navigate, many people find the end result to be
worth the hassle. Once you are awarded benefits, you will be able to provide
your child with the necessities of a comfortable and healthy lifestyle. </i></div>
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<br /></div>
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<i>For more information, visit <a href="http://www.disability-benefits-help.org/blog">Social Security Disability
Help</a> or contact Molly Clarke at mac@ssd-help.org. </i></div>
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<!--EndFragment--><br />Thank you, Molly, for the insightful article!! Sometimes, just seeing something simply laid out can remove some of the anxiety over delving into something like this.<br /><br />I wanted to add to the information Molly shared, with some of the other benefits that may be out there for families with medically complex/special needs children.<br /><br /><b>Katie Beckett Medicaid Waivers</b><br />All states have Waiver programs, generally called "Katie Beckett" Waivers, although each state has specific names for those that they provide. These programs are technically Medicaid Waivers that allow the child's needs to override the income requirements otherwise placed on families to qualify for SSI. Each Waiver is a little different in what it provides, but all provide Medicaid benefits in addition to any number of other options to provide support. Most include either respite, attendant, or nursing hours; while some include alternative therapies, home modification money, and more.<br /><br />Many states have a waiting list that can be, as it is here in Texas, as long as 10 years before you can access these Waivers, so getting on the list as early as possible is imperative, even if your child qualifies for SSI benefits at this time. Your income could improve, causing your child to lose the SSI benefits, but more importantly, these Waivers supplement the benefits even if your child continues to be eligible for SSI.</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span>
<span class="Apple-style-span" style="font-family: inherit;"><b>Words of Wisdom</b></span><br />
<span class="Apple-style-span" style="font-family: inherit;">I remember vividly how, in those early days when your just beginning to accept and acknowledge that your child may be delayed, or that they may have a chronic medical condition, that all you want to do is assume that your child will improve. That, especially ten years down the road, they will certainly not need this help. Please don't assume this.....be hopeful and aim in that direction, but be prepared by going forward and getting on the waiting lists for these programs. If, as we all hope & pray, it is not needed when they reach the top of the list, you can always decline the evaluation for the benefit. </span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;"><b><i>A Camp wrap up post is being worked on!! Have a wonderful weekend!!</i></b></span></div>
The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-82984957598409342282013-08-06T01:35:00.000-05:002013-08-06T11:08:41.278-05:0025 Years of Wedded BlissHappy 25th Anniversary to the love of my life. You truly complete me.<br />
<br />
Twenty five years ago on this day, I married the man I love. We were so young, and already facing such incredible trials, and yet, somehow we just knew this was what was meant to be. We knew that we grew stronger each day, together. <br />
<br />
I remember the day far too vividly for it to have been so long ago. I remember it being the most amazing day of my life, even if it wasn't perfect, and even though you were sick. So very sick. I remember the flowers, the dresses, the people we love that were there for us. I remember the contingency plans "just in case", and how determined you were that it happen on this day, come hell or high water. I remember how grateful I was to have it official; how grateful I was to be your wife.<br />
<br />
While certainly not the textbook perfect wedding, we never have done anything in the typical fashion, have we? All the parts that were important, were there. <br />
<br />
I remember the early days, just you and I. We quickly became a pretty invincible team!! We each grew into stronger people, independently & together. We faltered sometimes, and struggled, but we fought our way back to each other every time. It was together that we were strong, and capable, and whole.<br />
<br />
I remember the dreams we had of having a family. Long talks about what our family would be like, what we wanted to share and teach our children, how we envisioned this life we saw in the future. And I remember the heartache of those early years, and how we supported each other through each and every one of them.<br />
<br />
We have created an amazing family....far more amazing than we could have possibly hoped for. Way better than any dream we had....more complete than we could have envisioned. We have lived life more intensely, and more fully, than most, and we have never lost sight of each other.<br />
<br />
It has never been easy, but it has always been worth it.<br />
<br />
Last year, I faced the idea of a life without you in it. I was forced to contemplate how it all might look; how we would survive it. I realized that the strength you and I had built together would sustain us, but that I really, really need you. You always have my back, and I always have yours....and this is why we are so damn good together.<br />
<br />
I love you.....to the depths of my soul....always and forever. <br />
Thank you for loving me, flawed as I am, so completely.<br />
<br />
<br />
<br />The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com1tag:blogger.com,1999:blog-3259835718939993072.post-10217997432951505392013-08-01T00:11:00.004-05:002013-08-01T00:11:41.489-05:00And So It Begins: McNair Kid's Camp Fund 2013Thanks to the generous support of friends and family, we began our journey to Camp Korey Friday evening!! We continue to need your help, if you can. See the end of this post for further information.<br />
<br />
Thankfully, Madison's reaction to the anesthesia on Wednesday came under control; all the packing and running around to collect supplies happened; and all the phone calls to ensure everything was in place on the other end of this journey were made. We were off to the airport and ready to be in Seattle!!<br />
<br />
Mother Nature had a few plans of her own, and our flight to Seattle took a detour. From a planned stop in Albuquerque, to Lubbock, TX for refueling, and back to Albuquerque where we then had to wait for a new crew before heading on to our destination. We were scheduled to arrive in Seattle at 10:00pm Friday, but didn't actually arrive until 3:00am Saturday!! Twelve hours from arriving at the airport in Dallas, to leaving the airport in Seattle, made for a long, long night.....as evidenced by our leaving a bag at the McDonald's in the terminal and not realizing till we were loading our shuttle to the hotel!! Not just any bag, but our medical bag....the one with every single important thing we needed for this trip!! After a mad dash back to where it was left (with a stop at the ticket counter for a pass to get past security, and the loss of a water bottle at security), Michael was able to reassure the security person just beginning to examine the bag, that it really was ours and we needed it, badly!! <br />
<br />
<br />
Thankfully, all survived the adventure, and gratefully we had a day to rest before anyone was due at Camp. We needed it!!!<br />
<br />
Sunday could not get here fast enough for Chance & Madison!! Especially Chance, who both returned to his beloved Camp Korey, but also turned 20 years old!!!<br />
<br />
It was, as always, amazing to drive up to the front of Camp Korey....to see the place we love so much. It only got better as we made our way to volunteer check in and started seeing the people we love so much. Chance and Madison could not have been happier than they were in that moment. <br />
<br />
Abby enjoyed some time in the "only child" status that evening, and then was more than ready to get there on Monday. Arriving to cheers, and seeing the faces of the people you have not seen for a year, makes all smile pretty big. Spending the afternoon waiting to get Abby checked in was an opportunity to drink Camp Korey in again. To sit and look out over the fields, take in the beauty that is this special place, and to spend time reconnecting with old friends, and making new ones.<br />
<br />
The afternoon ended with meeting the nurse and counselor that are assigned to Abby. We went over all her medical paperwork, and chatted about my girl, and as we were wrapping things up, Abby's nurse shared the most amazing thing....She shared that she is there this year because of our family!! I wasn't quite sure what she meant, so she went on to explain that a friend of hers, a fellow nurse who has volunteered at Camp Korey before (and whom we adore), had been asking her to volunteer for a couple of years. Last year this friend shared our blog with her, and it convinced her she needed to be a part of this years Mito Week!!! Not only is she there, but she even got one of the McNair kids to love on and take care of!! How awesome and amazing is that!!<br />
<br />
I cannot even begin to express how much this meant to me to hear.<br />
<br />
Each year we wonder how our time at Camp Korey could possibly be as good as the previous year....and each year it just gets better and better. This year has already proven to be no exception!!<br />
<br />
In part because of what happened Tuesday evening. <br />
<br />
Michael and I were asked to attend a "friend-raiser" for Camp Korey, and to share our story. It happened at an amazing historic home on top of Queen Anne Hill, and was attended by some incredible people here in Seattle....people we hope will become a part of the Camp Korey family. I shared our story, and how profoundly Camp Korey has touched our lives, and was reminded how difficult it is to find the words to convey how life changing this week in the summer has been for my children....for our family. I did my best, and it seemed to have been well received. It was SUCH an honor to have this chance to give back, just a little, to this place we love so much. I hope we have a chance to do even more in the future!!<br />
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We have received a random text here and there from Chance & Madi, and there were pictures posted on Facebook of what appeared to be another totally messy food fight today!! Promise to share pictures when we get home!! We cannot wait to see them all on Friday and hear all about their week!!!<br />
<br />
We still need your help to make this life changing time possible. We are about $575 from our goal amount, and desperately need to raise this money if at all possible. I am extending the fundraising time, and I am so sorry to have to continue asking. We are so incredibly grateful for the amazing support so many have already shown. Any amount is helpful, and it adds up quickly. <br />
<br />
Donations can be made at <a href="http://www.youcaring.com/mccampfund">www.youcaring.com/mccampfund</a> or by clicking the link at the top right of this blog. If you prefer to send us the donation directly, please contact me at <a href="mailto:kass@swbell.net">kass@swbell.net</a> and I will get our address to you. <br />
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Again, thank you. More updates to come!!!<br />
<br />
<br />
<br />
<br />
The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-84070081027058239762013-07-26T02:34:00.000-05:002013-07-26T02:34:57.080-05:00Why It Is Important: McNair Kids Camp Fund 2013
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<span class="Apple-style-span" style="color: #353535;">Wednesday was
hard....physically & emotionally.</span></div>
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<br /></div>
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<span style="color: #353535;">It reminded me why getting the
kids to <a href="http://www.campkorey.org/">Camp Korey</a> is so vital. Why having something to look forward to, and creating
memories to hang onto, is so important.<o:p></o:p></span></div>
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<span style="color: #353535;"><!--[if !supportEmptyParas]--> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjt9qqNZRb4615rR-Or37ReF0v1C8zMueJeorWmDfW_XEx3sjKihd39UFLO79LzOYyQgIidXiSjzD8j6A1M5IrgwnFp7-P8F__-3n6emrVGR4KhA403F7wE71NAPePzfVDg2ndu9YYKxU/s1600/IMG_6108.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjt9qqNZRb4615rR-Or37ReF0v1C8zMueJeorWmDfW_XEx3sjKihd39UFLO79LzOYyQgIidXiSjzD8j6A1M5IrgwnFp7-P8F__-3n6emrVGR4KhA403F7wE71NAPePzfVDg2ndu9YYKxU/s320/IMG_6108.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Disney Channel & Iphone make it bearable</td></tr>
</tbody></table>
</span></div>
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<!--[endif]--><o:p></o:p><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">Madison and I started the day
before the sun came up. We were on the road by 5am, and at our hospital by 6.
By 7 she was in pre-op, where finding a vein willing to cooperate took two
sticks, digging, and two different people to make it happen. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">Madison made sure to get the
name of the medic-turned-IV-placer so she could plug her into her phone, for
next time. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;"><i>Yes, my 16 year old
daughter has a list of blood takers and IV placers for every hospital and lab
we need to go to. Knowing when we find one that can make it happen, as
painlessly as possible, we ask for them again. <o:p></o:p></i></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">There will always be the need.
<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">By 7:45, she was doped up on
Versed and rolling down the hall, away from me. I watched and marveled how
"old hat" this is for her. How she casually (albeit a little
drunkenly) chats with the nurses wheeling her away, and how, without trepidation
she tells me she will see me in a bit. Then I sighed, because ever so often it
hits me....this isn't "normal"...and she is amazing, brave, and
incredibly forgiving to us all for what she must endure at our hands.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">As I walked to the all too
familiar waiting room, and went through the routine of telling (the same nice
lady I see almost every time) my child's name, I found myself looking for some
spark of recognition from her. She seems to be one of the few that doesn't
recognize me on sight. But then, she hasn't met my children...<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;"><b>They are always in an
operating room when I am there. <o:p></o:p></b></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">They are the spark people need
to recall that last encounter...they are the reasons to remember. I smile to
myself thinking of the impact they have, and how they always have something to
say or do that makes people smile.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">I follow my usual routine of
running to Starbucks down the hall, grabbing (more) coffee and something to
eat, and willing it to take at least a few minutes so I am not left with my
thoughts, and the less than comfortable chairs, for too long. I wander out in
the hall, hoping to see someone I know (which happens far too frequently,
considering I am standing in a hospital)...someone who can fill a few more of
the minutes I have to wait. I wander for a few minutes, then hurry back to the
waiting room, worried I might take too long and miss the doctor. This time, I
see the surgeon as he hurries down the hall to join in on the procedure,
already in progress in the OR. I know his part won't take long, so I make my
way back and sit down.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">Sometimes, the plans we make
going in are not always how it pans out.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #353535;">The plan was to:<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">1. Put her under to scope her
esophagus and stomach to see how our control of reflux was going, and to make
sure we didn't see any signs of issues from the iron she takes, or yeast, due
to all the antibiotics she is on.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">2. To remove the long feeding
tube that was placed after her surgery in April, that we had been unable to
remove here at home. We tried twice, with the second attempt leading to another
abscess.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">3. To have our surgeon fully
examine the g-tube tract for signs of another fistula, or an explanation for
the latest abscess.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">And 4. To replace the long
g-tube with what she has always had, called a "button" g-tube.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">Madi was desperate to get that
long tube out and her old one back in. Desperate!! The long one hangs down a
ways, doesn't clamp (leading to messes when trying to hook up to her feeding
pump), is more obvious, and in general, just isn't what she wants. In this
life, she has to put up with enough, so we do all we can to make it as
unobtrusive as possible. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #353535;">How things actually went:<o:p></o:p></span></div>
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<span style="color: #353535;">1. We didn't have the
anesthesiologist we were told we would have. Not a huge deal, but I have gotten
used to not having to explain everything and convince them we should do what we
know works. I hadn't prepped for the discussion, and with that, I did not
advocate for Madison as well as I should have.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">2. While the scope went as
planned, there was a new finding. A nodule was found that hasn't been seen
before, but we are pretty sure it's something that happens sometimes when you
have been on PPI's (reflux meds) for too long. Lord knows she has, and we
talked again about the need to do surgery to hopefully stop the reflux and
allow us to get off the medication. Biopsies were done, so we will know more
next week.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">3. The surgeons inspection of
the g-tube tract was revealing. While not another fistula, there is a fissure
(tear) running from the stomach to about halfway up the tract. Barring us
allowing the g-tube tract to close, something we cannot do, the healing process
is going to take time. How much is anyone's guess. <o:p></o:p></span></div>
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<span style="color: #353535;">4. This fissure means we could
not switch her back to her old g-tube type, and another long tube was placed.
The button type would have put enough pressure on the stomach side of the tube,
it would cause more tearing and there is a real risk of the balloon that holds
it in place moving into the tract and causing more damage.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">I knew immediately that
Madison was going to be upset with this change in plans. It was, after all, the
ONLY part that she cared about. My feeling that she would wake up from
anesthesia and immediately pat her stomach to feel the new tube, and be
confused when it wasn't there, apparently is exactly as it went.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">I had to chuckle at our
doctors a little...our GI and surgeon are friends, and according to our GI,
they apparently had a bit of a fight over Miss Madison. GI was all ready to
place the button g-tube when the surgeon came in and promptly told him no way.
GI insisted he was going to do what his patient wanted....surgeon said no....GI
insisted...surgeon threatened to walk out...and they were at an impasse. Once
the surgeon found the fissure, even GI couldn't disagree that the button would
cause more problems, but he wanted me to make sure Madi knew he fought for her,
and was bullied by our surgeon....LOL!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">As expected, Madi was a mess
when I got back to recovery and could explain what happened. I haven't seen her
that sad in a long time. And my heart broke. And there was not a thing I could
do to make it better.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">And then....we talked about
camp. Little by little, as we were discharged and made our way home, she smiled
a little more, and distracted herself with camp plans. The Dr. Pepper with
"good ice" from Sonic helped too.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">What happened, in the grand
scheme of things, was not a big deal. She has done the long tube for 3 months,
and put up with it like a champ, and she can do it again. This was one of those
quality of life moments....she needed the things to go back to the way they
were... she needed this "win". She was disappointed, and sad,
and faced with a set back she didn't need.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">She also proceeded to do what
Madi does so amazingly well....she quickly started getting "over it".<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">My day wasn't done, oh no!! <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #353535;">A drive home, a switch out of
children, and I was on my way back with Chance. Wednesday was the day we met
with our pain doctor to try and get him some relief and a plan. For reasons we
still don't understand, Chance has been in a decline since January, that has included
a significant decrease in physical stamina, constant muscle pain, a week long
episode in April of severe muscle pain, and, as time has gone on and his body
has been stressed, Neuro issues, GI problems, and an increase in fatigue.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">After consulting with everyone
I can think of, making changes in physical therapy routines, and testing what
we could think to test, he & I were finally faced with the need to start
treating the symptoms and hoping for some relief. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">The appointment went well, and
we have a plan that we hope might work. It won't fix whatever the problem is
exactly, but at this point, pain relief is a huge need.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #353535;"><b>Distraction is too</b></span><span style="color: #353535;">.<a href="http://www.campkorey.org/"> Camp Korey</a> is an awesome distraction, coming exactly
when he needs it. <i>Coming exactly when I need it too.</i></span><span style="color: #353535;"><o:p></o:p></span></div>
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<br /></div>
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<span style="color: #353535;">Thursday, my inadequate
advocating for Madison came back to bite us on the butt, when she woke with
every muscle in her body (even her tongue) in severe pain!! It was a long day,
with lots of phone calls and worry, but we finally were able to determine that
she was given something she hadn't had before, and that is likely
causing this problem. Once we figured that out, pain meds were given, and by
evening she was in much better shape.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;"><b>Days like these, they are
hard, but they remind us to hang on even tighter to those things that mean so
much to us. We are so very grateful for each and everyone one of them.</b><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">We are steadily making our way
to this goal....with your help!! We thank you, from the bottom of our hearts,
for your support.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">I have extended the deadline
on the <a href="http://www.youcaring.com/mccampfund">fundraiser</a> to Sunday, and the <a href="http://ourexceptionallife.blogspot.com/2013/07/a-raffle-mcnair-kids-camp-fund-2013.html">raffle drawing</a> will take place Monday
morning. If you feel led, we are still in desperate need of your help at
<a href="http://www.youcaring.com/mccampfund">www.youcaring.com/mccampfund</a><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #353535;">We fly out tomorrow evening,
deliver Chance & Madi to <a href="http://www.campkorey.org/">Camp Korey</a> on Sunday, and Abby on Monday for the start
of another amazing, life changing week. All thanks to you. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #353535;">Thank you.</span><o:p></o:p></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-46856109322036294732013-07-23T19:42:00.002-05:002013-07-23T19:42:59.998-05:00A Raffle: McNair Kid's Camp Fund 2013We are so grateful for the support we are receiving. Thanks to you all, we are making progress towards our goal of getting back to Camp Korey with the kids.<br />
<br />
I am reminded how hard it is to ask for help.....and how incredible our community is when we have to do it.<br />
<br />
<div style="text-align: center;">
<b><i>With that in mind, we want to offer something creative to those that are able to help. </i></b></div>
<br />
For every donation of $25 or more made by July 27th, your name will be entered into a raffle for an original piece of art made by Abby, Madison, and/or I. We will work with you to create something just for you!! <i>(Those that have already donated will be entered also)</i><br />
<i><br /></i>
<div style="text-align: center;">
<b>We will draw two names and announce the winners by Monday, July 29th....the first day of camp!!</b></div>
<br />
Some examples of the work we have done:<br />
<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xw3dlMaCoULqMoohAzCXOfRDUg4mah8j-S5ZUGn9xHWiZExj_5BOLeHrUWuJFInd4vyK-YBnVg0AGaeX4Vw7ARvOugqh9PpBy8oe31TUVvkWJ88JJdJpoNfoRt_pmvbIzUEuFYDiknI/s1600/AbArtCollage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xw3dlMaCoULqMoohAzCXOfRDUg4mah8j-S5ZUGn9xHWiZExj_5BOLeHrUWuJFInd4vyK-YBnVg0AGaeX4Vw7ARvOugqh9PpBy8oe31TUVvkWJ88JJdJpoNfoRt_pmvbIzUEuFYDiknI/s400/AbArtCollage.jpg" width="400" /></a></div>
<div style="text-align: center;">
All acrylic on canvas</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
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Acrylic on Canvas (paintings)</div>
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I Love Big D photo collage (20x20)</div>
The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-45663507027630409642013-07-19T10:27:00.000-05:002013-07-20T08:03:58.431-05:00McNair Kid's Camp Fund 2013<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0JUnQ-QrVzicJV0JdOR0Nr8bvm-qW_Xe6nJK1JoJwk_ckwPqOaGY6W5RYcT4xfqJ_N8CPlnJSkobTtHuTl-t1pEtsLeyDH2SX7sxxP2Q3ajccO7Ew-V8EGqi3XR5LhAbzhtQJ6B3ei9I/s1600/DSCF2040.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="145" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0JUnQ-QrVzicJV0JdOR0Nr8bvm-qW_Xe6nJK1JoJwk_ckwPqOaGY6W5RYcT4xfqJ_N8CPlnJSkobTtHuTl-t1pEtsLeyDH2SX7sxxP2Q3ajccO7Ew-V8EGqi3XR5LhAbzhtQJ6B3ei9I/s640/DSCF2040.JPG" width="640" /></a></div>
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Dear Friends, Family, & Supporters,</div>
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We come to you today to humbly ask for help to make it
possible to get the kids to Camp Korey again this year. <br />
<br />
<i>Donations can be made at</i> <a href="http://www.youcaring.com/mccampfund">www.youcaring.com/mccampfund</a> <i>or by clicking on the link on the top right of this page.</i></div>
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There are moments in time, and acts of kindness, that touch
you at the depths of your soul. They happen rarely, and when they do, they move
you, and take your breath away. Thanks to all of you, our family has
experienced moments like this several times over, on a grander scale than we
could have imagined.</div>
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“<i>I’ve seen and met angels wearing the disguise of ordinary
people living ordinary lives.”</i></div>
</div>
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Tracy Chapman</div>
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These moment’s for us started with a plea for help to get
the kids to camp each summer; and it has been met with many angels. With each
act of kindness, our hearts swelled a little more, and we were (yet again)
blown away by the support—from the “village” we have been blessed with for our
family. I was again reminded how much one person can make a difference in
another person’s life and how a group of individuals can provide a family with
a life changing experience.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizzFLVFbp1r-lmPLJCkBK4vIc-I3RNmT9GPyWrb2KwW5OnDsFF0XFdt2R6jwBU-_Eu5JbNjhVom2dsx_fqU8gD-7Hnf9MluQ_sIfvm7L6GP1xugysD2W7a0cJTMaVAqiZcPzHkGITkgdM/s1600/CK2011BoyCabin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="226" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizzFLVFbp1r-lmPLJCkBK4vIc-I3RNmT9GPyWrb2KwW5OnDsFF0XFdt2R6jwBU-_Eu5JbNjhVom2dsx_fqU8gD-7Hnf9MluQ_sIfvm7L6GP1xugysD2W7a0cJTMaVAqiZcPzHkGITkgdM/s400/CK2011BoyCabin.jpg" width="400" /></a></div>
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They may say Disney World is the “happiest place on Earth”,
but for one week in the summer, I have no doubt that Camp Korey really is. The
smiles on every child, counselor, nurse, and doctor tell me I am right. Each
year we wonder how we can possibly top the year before, and somehow it happens.
This place…Camp Korey…and the people there, change lives.</div>
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With your help, this year we return, perhaps more
triumphantly than ever before….This year we reach the goal we set last year to
be returning to this special place as a <u>whole</u> family, with Michael;
Chance, a year older and a year wiser, returns a seasoned counselor, with hopes
and goals for every one of “his kids”; Madison is returning, in the role of LIT
(Leadership In Training) for the first time!!; and Abigail will be savoring her
final year as a camper.</div>
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This year, while impossible to imagine it being possible, we
are even more grateful for this blessing in our lives. <o:p></o:p></div>
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Camp Korey’s mission is to “<i>honor the courage, strength,
& determination of children and their families who battle life threatening
and serious illnesses; and to provide them with a safe, friendly, medically
sound environment in which to simply have fun and be kids.</i><span style="font-style: normal;">”<span style="mso-spacerun: yes;"> </span>Camp
Korey fulfills this mission in amazing ways!!</span></div>
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For those that may be new to our story, my name is Heather
and I have been married to my husband, Michael for almost 25 years (our
anniversary will happen while we are in Seattle). We are the proud parents to
three amazing young people….Chance (19), Madison (16) & Abigail(15).<span style="mso-spacerun: yes;"> </span>I write to you today to share our story
and to ask for your help to make summer camp possible for our children again
this year.<o:p></o:p></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWXmLzr44mIVpHN46_3l7zE5YhOYguxTqOsiTsRNs_kIOijp9k1ThhL5cgBhm60TVaDmvJgeBQKaxbCUV3j6zQ3HRcR-vFOVrw_Uc8UJvCtRV2Paw2NSwutJmNS0b55iYD-eWPf_wzMsU/s1600/CK+2009.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWXmLzr44mIVpHN46_3l7zE5YhOYguxTqOsiTsRNs_kIOijp9k1ThhL5cgBhm60TVaDmvJgeBQKaxbCUV3j6zQ3HRcR-vFOVrw_Uc8UJvCtRV2Paw2NSwutJmNS0b55iYD-eWPf_wzMsU/s640/CK+2009.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camp Korey 2009</td></tr>
</tbody></table>
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Chance, Madison and Abigail have endured a great many
challenges since they were very young, due to an inherited metabolic disease
called Mitochondrial Disease.<span style="mso-spacerun: yes;">
</span>Mitochondria are present in every cell in the body except for red blood
cells, and are responsible for the production of energy for the cells to use to
function. <span style="mso-spacerun: yes;"> </span>When a Mitochondrial
Disease is present, not enough energy can be produced and many body systems are
affected and progressively fail to provide their function within the body.<span style="mso-spacerun: yes;"> </span>Any stress on the body, even something
as simple as a cold, can cause devastating affects. It is a life threatening
disease with no cure, and minimal treatment options.<o:p></o:p></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV0Js8wXHK_ciGnfFF0AHxsb4NIH7mHITBYcV1Hf12jnjp1Zdx2jJQY9PFphibck9qzERGjNrJYMBW3tIaSln7SnjtUb9Kj1v60l3jEZ5qcJlDl09l6KCTRhBc1fyI4GoXPadvIXswTQA/s1600/CK+2010.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV0Js8wXHK_ciGnfFF0AHxsb4NIH7mHITBYcV1Hf12jnjp1Zdx2jJQY9PFphibck9qzERGjNrJYMBW3tIaSln7SnjtUb9Kj1v60l3jEZ5qcJlDl09l6KCTRhBc1fyI4GoXPadvIXswTQA/s640/CK+2010.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camp Korey 2010</td></tr>
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Camp was initially important to make happen because it was a
“typical” right of passage for childhood, and one we thought<span style="mso-spacerun: yes;"> </span>would never be possible for the kids.
Due to all three being unable to control their body temperature correctly, most
summer camp locations are too hot for them to be able to participate, and their
medical needs make most camps, even those for medical reasons, unable to handle
their complex needs.<o:p></o:p></div>
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Thankfully Camp Korey, just outside of Seattle, Washington,
exists and they are the first & only camp in the country to have dedicated
a week to Mitochondrial Disease kids!! <a href="http://www.campkorey.org/">Camp
Korey</a> is a medically supervised camp staffed with physicians and nurses,
and trained camp counselors for children suffering from serious and life
threatening illnesses. The camp provides a week-long experience of camp
programs and activities for children ages 7-15 at no cost to them.<o:p></o:p></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ZaSCuq3FOuU2l38gF-q_ahYcuw7JnmfgI9XrOuURIM_QchjqE2H59VcQEqxCZWd8WPtIyRqimSW0fDulU0FCrswdKl9yibp6yknF-uJE12sj2PKVIzKrhQZKlvKrC4uobqyKgsysvak/s1600/CK+2011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ZaSCuq3FOuU2l38gF-q_ahYcuw7JnmfgI9XrOuURIM_QchjqE2H59VcQEqxCZWd8WPtIyRqimSW0fDulU0FCrswdKl9yibp6yknF-uJE12sj2PKVIzKrhQZKlvKrC4uobqyKgsysvak/s640/CK+2011.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camp Korey 2011</td></tr>
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What camp has become for the kids is so much more than
giving them a “typical” experience.<span style="mso-spacerun: yes;">
</span>It has changed their lives!!<span style="mso-spacerun: yes;">
</span>They come away from camp more confident & independent, but more
importantly, they come away in better shape physically, mentally &
emotionally, with a renewed spirit of hope and optimism.<span style="mso-spacerun: yes;"> </span>It is truly incredible to see them
shine, literally, after a week at Camp Korey.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpfrh6CtVrBAQgeFHqj0PQHWBvlIU4wNISGuaSig_TDPE5Wzz0yLm9dLhj8gjTdPEkELUMOuypiMSfo2NILWuSDAMgtfe5ktyGthtSkJHjpM9gcJ1vNUUgk4vO-4wnt8NxX8VXu1KpW8/s1600/CK+2012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpfrh6CtVrBAQgeFHqj0PQHWBvlIU4wNISGuaSig_TDPE5Wzz0yLm9dLhj8gjTdPEkELUMOuypiMSfo2NILWuSDAMgtfe5ktyGthtSkJHjpM9gcJ1vNUUgk4vO-4wnt8NxX8VXu1KpW8/s640/CK+2012.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camp Korey 2012</td></tr>
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To quote <a href="http://www.campkorey.org/">Camp Korey’s</a>
website: “For a few days or more at Camp Korey, children enjoy the novel
experience of being defined not by their medical diagnosis, but by their
spirit, their creativity, and their own potential.” Thank’s to Camp Korey, our
children have the chance to be defined by such wonderful things.<span style="mso-spacerun: yes;"> </span>Thanks to our supporters, like you,
they have this chance to be so defined!! Its because of you and ALL that you
do, that these kids can flourish and be amazing, at Camp Korey, and in their
world in general.<o:p></o:p></div>
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While the camp is free to attend, we do have to get
ourselves there, cover expenses getting the kids ready to go, and expenses
while we are there, and this is where you all come in. <o:p></o:p></div>
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<span style="font-family: "Times New Roman"; font-size: 12.0pt;"><b>We need your help to make it happen!! </b></span><span style="font-family: "Times New Roman"; font-size: 12.0pt;"><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtbeVXdD7sc4a6JdeChcsZUHIBQDZ1o8SuG14pPn281j5GDOAZ_btX9pHcSCakG9VN2YXe3FzLe83w7q86u5vDQp5Rll_3yMCkeVqHXTkmdwLFKksZQvLaruQWJ7KzYM-zrAnAL7yldU0/s1600/IMG_4023.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtbeVXdD7sc4a6JdeChcsZUHIBQDZ1o8SuG14pPn281j5GDOAZ_btX9pHcSCakG9VN2YXe3FzLe83w7q86u5vDQp5Rll_3yMCkeVqHXTkmdwLFKksZQvLaruQWJ7KzYM-zrAnAL7yldU0/s400/IMG_4023.JPG" width="400" /></a></div>
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<span style="font-family: "Times New Roman"; font-size: 12.0pt;">Fifteen years
of very high medical expenses has devastated us financially, so something like
this is just out of our reach without help.<span style="mso-spacerun: yes;"> </span>This last year has been especially difficult for our family,
and all three need something to look forward to, and are so excited about the
prospect. All to say, we just have to find a way to make this happen.<o:p></o:p></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0N2KUDStyfUJ7EBEbzxikR9107BxGxgYVzh_JDQdHVJJrl6pwHBF5CvoeEsplOOMD9PbAuQgPdSKSnX2bKUKzxLK1eAsh1eh8piyr_DyosgmsV-dn5VlU4hdsHRLz8DBKJymlng_Y-7U/s1600/IMG_4026.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0N2KUDStyfUJ7EBEbzxikR9107BxGxgYVzh_JDQdHVJJrl6pwHBF5CvoeEsplOOMD9PbAuQgPdSKSnX2bKUKzxLK1eAsh1eh8piyr_DyosgmsV-dn5VlU4hdsHRLz8DBKJymlng_Y-7U/s400/IMG_4026.JPG" width="400" /></a></div>
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<span style="font-family: "Times New Roman"; font-size: 12.0pt;">We are working
hard as a family to raise the money needed, and are incredibly grateful for any
contributions you might be able to make.<span style="mso-spacerun: yes;">
</span>We have full faith that this is meant to be and are looking forward to
making some incredible memories.<o:p></o:p></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirTz67dYr0j2VaVACYWZZ6t8wvYaskBThYDz9o6eg-avl7qA99jLrmHWmwwKJmgj7EHQJljy91-e31bhI0M6DXHxN31X82zsI1ZiMtS6bRVLZdlKzv_sVWJcjMNDn6hfKVwsYBaDx25P4/s1600/IMG_3956.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirTz67dYr0j2VaVACYWZZ6t8wvYaskBThYDz9o6eg-avl7qA99jLrmHWmwwKJmgj7EHQJljy91-e31bhI0M6DXHxN31X82zsI1ZiMtS6bRVLZdlKzv_sVWJcjMNDn6hfKVwsYBaDx25P4/s400/IMG_3956.JPG" width="400" /></a></div>
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<span style="font-family: "Times New Roman"; font-size: 12.0pt;"><b>Thank you for your thoughtful consideration
of our cause.<o:p></o:p></b></span></div>
<div align="center" style="text-align: center;">
<span style="font-family: "Times New Roman"; font-size: 12.0pt;"><b><br /></b></span></div>
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<span style="font-family: "Times New Roman"; font-size: 12.0pt;"><b><br /></b></span></div>
<span style="font-family: "Times New Roman"; font-size: 12.0pt;">Sincerely,<o:p></o:p></span><br />
<span style="font-family: "Times New Roman"; font-size: 12.0pt;">Michael &
Heather McNair<o:p></o:p></span><br />
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Proud Parents to Chance, Madison & Abigail<o:p></o:p><br />
<br />
Previous posts about Camp:<br />
<a href="http://ourexceptionallife.blogspot.com/2011/07/mcnair-kids-camp-fund.html">McNair Kids Camp Fund 2011</a><br />
<a href="http://ourexceptionallife.blogspot.com/2011/08/incredibly-blessed.html">Incredibly Blessed</a><br />
<a href="http://ourexceptionallife.blogspot.com/2011/08/happiness-is.html">Happiness is</a><br />
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<i>Camp Korey creates some awesome videos to share their
mission. The following three tell a little more about the Camp, and include the
kids and I talking about what Camp Korey means to us.</i><o:p></o:p></div>
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<a href="http://www.youtube.com/watch?v=1Jnp1v70dw4&feature=youtube_gdata_player">A Day in the Life at Camp Korey (me, Madi & friends)</a><o:p></o:p></div>
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<a href="http://www.youtube.com/watch?v=_sP4rog5iaM&feature=c4-overview-vl&list=PL857876C2913C4A97">Leaders In Training (Chance & friends)</a><o:p></o:p></div>
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<a href="http://www.youtube.com/watch?v=1lF1EJAGtsE&list=UUQG6jqs5Z1Yh619Daqr0FYg&index=3&feature=plcp">How has Camp Korey Helped You Grow? (Madi & friends)</a><o:p></o:p></div>
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<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-33961361904029889522013-07-17T00:46:00.001-05:002013-07-17T00:46:43.423-05:00Bullet Points & Random Pictures<!--[if gte mso 9]><xml>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIthF6i3DjVrOzI4hGh1b5NMsF5txH_MXR7xYnYw9SfEYRXT_z3elQhfkSDkPMvjMe876j1M8Sfod65JLuvqLDizUBOHG0zhPTHl7gOMVLdWjF6kbTawUar4Ed3st2t8taOgsqdNNyWH0/s1600/IMG_5678.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIthF6i3DjVrOzI4hGh1b5NMsF5txH_MXR7xYnYw9SfEYRXT_z3elQhfkSDkPMvjMe876j1M8Sfod65JLuvqLDizUBOHG0zhPTHl7gOMVLdWjF6kbTawUar4Ed3st2t8taOgsqdNNyWH0/s320/IMG_5678.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Buc-ee's</td></tr>
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There is so very much going on over here, which calls for a
bullet point post.<br />
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And random pictures.</div>
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Of course.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWSx3DX7PxOvWGBF5hPpoNOlj9a4uTlyMD6gutIEiBgbei6wfGPyT4DLynts_4DEdz_Z5rybVmWcam46g1JUCR4wtzv-1IAVN6au24Ke9oSBTbnV70bLLlWUDRLbIOaDLSMl99XX9wF0/s1600/IMG_5673.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWSx3DX7PxOvWGBF5hPpoNOlj9a4uTlyMD6gutIEiBgbei6wfGPyT4DLynts_4DEdz_Z5rybVmWcam46g1JUCR4wtzv-1IAVN6au24Ke9oSBTbnV70bLLlWUDRLbIOaDLSMl99XX9wF0/s320/IMG_5673.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this girl</td></tr>
</tbody></table>
*A week in Houston in May to see the kid’s medical team
there (some of whom we had not seen in person in more than a year because of
our “excitement” here last year) = long appointments, too much information
shared, more changes to care than one can imagine (we are STILL working on
making some of the changes happen), and precious time with friends.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA0Hv5bGH0clkMI_vzG4cvXJQE81UpBlwuJohcgSlGeHE3rIM1OiIx7p3J_ht7V6DzhLBUFN2Iw2BOrh_immmEYpPARUty2DNFddtNxGW3cFHxbdLeWCZ3x11bI40uuQYL0gvJYuogm48/s1600/IMG_5676.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA0Hv5bGH0clkMI_vzG4cvXJQE81UpBlwuJohcgSlGeHE3rIM1OiIx7p3J_ht7V6DzhLBUFN2Iw2BOrh_immmEYpPARUty2DNFddtNxGW3cFHxbdLeWCZ3x11bI40uuQYL0gvJYuogm48/s320/IMG_5676.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With our special friend, Cayde (new lungs!!)</td></tr>
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*My trip to the Mito Symposium went really well. I have a
partially written post I hope to get posted soon. Lots of information, awesome
people, and a few days in California is note worthy.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkoi1i1363vdDQqFrCDBwvHiSJ41lp3d1gShXbJkLUh_BAKnn3mL6E6OEQn8x56FXAikv42G6Ds0v86IUkB8u15wUbq4RpTAXHdGdAOHFu1N9YVBUbv9k3DQ-TbvAYElu3eDIQojuWkc/s1600/IMG_5683.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkoi1i1363vdDQqFrCDBwvHiSJ41lp3d1gShXbJkLUh_BAKnn3mL6E6OEQn8x56FXAikv42G6Ds0v86IUkB8u15wUbq4RpTAXHdGdAOHFu1N9YVBUbv9k3DQ-TbvAYElu3eDIQojuWkc/s200/IMG_5683.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pool time</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVC3CIPe18lwSRmE2MycW-5nCbOtvw2VGZLP69Lh4hBkaoKmx__qVHJDD1pvVU2j9fS1krMhytF_TdnmqZpm1eFnOEbYJC3L8TaRnfjFC-QasSWvhW5FstQALZb4_T_wznYI47fHN0oSs/s1600/IMG_5733.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVC3CIPe18lwSRmE2MycW-5nCbOtvw2VGZLP69Lh4hBkaoKmx__qVHJDD1pvVU2j9fS1krMhytF_TdnmqZpm1eFnOEbYJC3L8TaRnfjFC-QasSWvhW5FstQALZb4_T_wznYI47fHN0oSs/s200/IMG_5733.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pretty girl</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My birthday with the Fam</td></tr>
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*We have now tried to remove the MicKey peg tube (feeding
tube the surgeon put in after Madison’s surgery) TWICE and cannot get the
stupid thing out. This last attempt resulted in…..wait for it……another stinking
abscess. Another stinking abscess = Madi will be going under anesthesia next
week for an endoscopy so they can remove the tube and explore her g-tube tract
looking for another fistula…..on Wednesday….four days before we leave for
Seattle/Camp Korey. Nah….I am not stressed about that AT ALL!!<br />
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<tr><td class="tr-caption" style="text-align: center;">Father Day</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Good2Go Tacos...mmmm</td></tr>
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*We had some precious friends come up from Houston and stay
with us for the 4<sup>th</sup> of July weekend…..and had an amazing, awesome,
wonderful time. </div>
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<tr><td class="tr-caption" style="text-align: center;">Fireworks at Fair Park</td></tr>
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*My precious grandmother developed some issues and ended up
inpatient on the 1<sup>st</sup> of July. Two hospitals & a skilled nursing
facility later, she is settling in not far from my home, and is recovering like
a CHAMP!! It was a stressful, busy couple of weeks while we got her back to
better health, but she is improving daily and we are looking forward to having
her closer by.<br />
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<tr><td class="tr-caption" style="text-align: center;">What a black labrador amuses himself with, apparently</td></tr>
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*I apologized to Abby for being gone so much lately (time at
the hospital with Memaw) and she responded with, “It’s okay mom, the hospital
is just what we do in the summer.” Ugh. It was a gut check for me, but she
truly meant it as reassuring.<br />
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<tr><td class="tr-caption" style="text-align: center;">My son was called for Jury Duty today!!!</td></tr>
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*Prep for Seattle has been slowly, but surely, happening.
The McNair Kid’s Camp Fund post will go up sometime later today!!!</div>
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Look at that…..back to busy and “normal”. </div>
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Did last summer really happen????????</div>
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<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-15593957491154683492013-06-12T12:47:00.001-05:002013-06-12T12:47:16.630-05:00Off to Learn....& Worry<span class="Apple-style-span" style="font-size: 12px;">
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<span style="color: #353535; font-family: HelveticaNeue;">Just
a little. <o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">Year
before last, a friend asked me to co-lead a new support group here in Dallas
for those with Mitochondrial Disease. I was hesitant, only because my life is
so unpredictable and I didn't want to commit to something I could not follow
through on. She talked me into it....and if I am honest, I am glad she did. <o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">She
has the youth and hope to make this happen.....I have the age and experience to
know how tough it is to make one work here. <o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">I
have been down this road, a couple of times now. <o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">I
have theories why it's a difficult endeavor for this location, but there is no
question it's needed. We just need to be clever enough to make it happen and be
successful, in whatever form it might take.<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">Each
year, the <a href="http://www.umdf.org/">United Mitochondrial Disease Foundation</a> holds a symposium in
different parts of the country. Some of the top doctors and researchers in the
field of Mitochondrial medicine convene in one location to share information
with the scientific community for 3 days, and then the families for two. <o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">It
has only once been in this part of the country, in 2002, and I was there for
that one. It's the only one I have attended, but can say, it's a pretty
remarkable experience, and an awesome way to learn more about this disease we
are living with.<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">With
a new group here, the <a href="http://www.umdf.org/">UMDF</a> offered us a scholarship to be able to attend
this year, to have the chance to learn more, to network, and hopefully find
some ideas on getting this group going. I could not have done it without them
covering my travel costs, and I am incredibly grateful!!<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">In
all honesty, I don't love leaving town without my crew. I worry a little that
someone will get sick and I won't be here to manage it. I worry a little that I
will miss some moment, or that we could have created some together had they been
able to come with me. Needless to say, I worry a little. And I miss them....a
lot.<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">I
have two of my three "acting up" some medically right now, and this
makes me, well..... apprehensive. However, I am leaving them in awesome hands
(thanks Mom, Michael & Stephanie!!), and I just have to have some faith
that this is meant to be.<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">I am
slowly warming up to the idea of three days on my own ;-) (but seriously, way
more slowly than I think I should be....LOL)<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">Please
say an extra prayer that my family behaves while I am away.....that my brain
can stay engaged enough to learn as much as possible....and that I can get
there and get back with no complications!! I fly out tomorrow, and get back at
noon on Sunday, just in time to celebrate the man I love.<o:p></o:p></span></div>
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<span style="color: #353535; font-family: HelveticaNeue;">I am
officially declaring that I take NO responsibility for what my crazy family may
do while I am away!! You have been warned!!!</span></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-17891683839657198702013-06-08T23:39:00.000-05:002013-06-08T23:39:26.187-05:00On Turning 45 & a Year Later<br />
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We acknowledged the one-year mark of Michael’s accident on
May 15th. It doesn't sound right to say we celebrated it, or for that matter,
that we mourned it. It just was. And it was acknowledged.</div>
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<o:p></o:p></div>
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Michael took the day off and we spent it together as a
family of five. We delivered baked goods to some of our haunts from that time
in our lives....Baylor Institute for Rehabilitation, brain injury floor; BIR's
inpatient rehab floor; and our trauma surgeon’s office. There wasn't a total
rhyme or reason for where we stopped by this time around, but it felt good to
go by and say thank you, again. Afterwards we talked of how "at home"
Michael felt at BIR, and how I felt some anxiety about being there, although I
hadn't expected to. A reminder that although we traveled this path together,
our experience was still different. A few weeks out now, I am not sure that we
will feel the need to go back again. As it was, there were only a few people we
recognized from our time there, and they were the ones we wanted to see, and
for them to see Michael, so whole again. Next year we will take some food to
the ICU families....or maybe we won't feel compelled to acknowledge the day in
quite the same way we did this year. <o:p></o:p></div>
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We finished the day with Michael riding in the Ride of
Silence for the first time, and no doubt with more meaning and emotion than it
could have had before. My mom, the kids and I were there too, and it was a
deep, meaningful way to end the day. <o:p></o:p></div>
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Seeing Day 365 brought closure, even more than I had
anticipated. I hoped it might, but was afraid to put too much stock in that
possibility. Instead we went into it wanting to acknowledge it, and get from it
what we could, without a whole lot of expectations. I am glad for that. It made
it even better I think. And now, again a few weeks out, I think it lifted some
invisible weight Michael and I were both carrying around with us. I feel like I
have sighed with some relief I didn't even realize I needed.<o:p></o:p></div>
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And at the end of the day, it was a day of gratitude. It's
difficult to express the depths of gratitude we feel to get the chance to see
this day come.<o:p></o:p></div>
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Friday was my 45th birthday, and memories of where we
were, and what was happening, this time last year crept in. We really are
nearing the end of "the firsts", but this was one we needed to get
through and feel what we needed to. The feelings were all good ones, even if I
am a little shocked that I could possibly be 45 years old. I am now the same
age my mother was when Chance was born and she became a grandmother. It didn't
seem like that big of a deal back then, but being on this end of things, I
cannot even imagine it!! It's pretty remarkable to look back on four and a half
decades of life, and perhaps even more so, with a great deal of respect for
each and every moment that I have lived. <o:p></o:p></div>
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I sometimes find myself praying for calm, for a time
without trials set in my path. But the truth is, without the trials, the beauty
of life, and the blessings sometimes hidden within those moments, would never
be as sweet, nor as profound. <o:p></o:p></div>
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So I am grateful. <o:p></o:p></div>
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For each and every moment of these 45 years I have had the
privilege of living. <o:p></o:p></div>
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For every wrinkle. <o:p></o:p></div>
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For every gray hair.<o:p></o:p></div>
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Hello 45... ...let's do this!!<o:p></o:p></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com3tag:blogger.com,1999:blog-3259835718939993072.post-60592066967976329032013-05-13T10:27:00.002-05:002013-05-13T10:27:24.685-05:00The First Ride To Work
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While he has been riding for a while now, today Michael rode
all the way to work for the first time since the accident.</div>
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<tr><td class="tr-caption" style="text-align: center;">Starting out way too early for me!!</td></tr>
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An incredible milestone, even more quickly than I thought
possible. And let’s face it, I was unnaturally optimistic about this recovery!!<o:p></o:p></div>
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I have gone back and read that <a href="http://ourexceptionallife.blogspot.com/2012/05/it-only-takes-second-for-your-world-to.html">initial post</a> I wrote, just
two days into this journey, and can see in hindsight that I was WILLING him to
be okay. I actually have laughed at myself a little for being so sure about
things, and then amazed at how right I actually was. I wrote:<o:p></o:p></div>
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<i>We are SO lucky......<o:p></o:p></i></div>
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<i>as always, he was wearing his helmet and it no doubt
saved his life.<o:p></o:p></i></div>
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<i>the 150+ miles of riding every week for the last 7
years is going to make his ability to recover from this devestation possible.
I am convinced of it, even if the doctors don't seem so sure.<o:p></o:p></i></div>
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<i>his bull headed stubborness and obsession with riding
will make this recovery possible. The doctors just don't know who they
are dealing with yet.<o:p></o:p></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal">
<i>we have the most amazing friends, family &
work-family who are literally holding us up through this time.</i><span style="font-style: normal;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: center; text-autospace: none;">
<b>The doctors just don't know
who they are dealing with yet.</b><span style="font-weight: normal;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div align="center" class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: center; text-autospace: none;">
<span style="font-size: 16.0pt;"><b>I
do know my man.<o:p></o:p></b></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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<!--[endif]--><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
I honestly didn’t even feel a twinge of worry as he walked
out the door this morning.<span style="mso-spacerun: yes;">
</span>Granted, it was painfully early and I was only half awake, but the truth
is, I was happy to see him on his way. I prayed for safety, and prayed he would
feel good as he took on this challenge, but knew in my heart of hearts, this is
<i>EXACTLY</i><span style="font-style: normal;"> what he is supposed to be doing.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG0h1a1vW0XkcZOxNgHrmX7t1U9YnR8UrzYUrc07Mf3uqymxML8swWODxuDRFl9XNdgzV0c-Vt04lNXIzYXfyEYrn5jbii5A035n7cI5pveWEzFXondB91kljCAy0wQjAqTlwRJ29pzvM/s1600/IMG_5557.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG0h1a1vW0XkcZOxNgHrmX7t1U9YnR8UrzYUrc07Mf3uqymxML8swWODxuDRFl9XNdgzV0c-Vt04lNXIzYXfyEYrn5jbii5A035n7cI5pveWEzFXondB91kljCAy0wQjAqTlwRJ29pzvM/s320/IMG_5557.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Lucy" (short for Lucinda from Don Quixote), sitting exactly where she should be this morning</td></tr>
</tbody></table>
<!--[endif]--><br />
<div class="MsoNormal">
<!--[if !supportEmptyParas]--> May is National Bike Month, and this week is "Bike to Work" week. You can read more about it here......<a href="http://www.bikeleague.org/programs/bikemonth/">http://www.bikeleague.org/programs/bikemonth/</a><!--[endif]--><o:p></o:p></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-47384341456084551022013-05-07T20:05:00.001-05:002013-05-07T20:05:46.181-05:00The Value of Nurses
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<br />
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<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
This is National Nurse’s Week and I could not allow it to
pass without saying a few words about the nurses in our life.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While the vast majority of the population has fleeting
encounters with those in nursing, my sanity quite literally depends on the
nurses that are in my life. I just glanced at the calendar to confirm that,
indeed, a nurse has played a part in every single week as far back as I was
willing to look. On the rare week we are not seeing one, I am most assuredly on
the phone or emailing with one or more of them, attempting to deal with one
thing or another.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The truth is, our nurses are almost more important than our
doctors. Minimally, they are the ones I depend on the most.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik_0bE64QaSBa4tFM8CYfShToqlC8aGUoQk5R-Dp7f5hoVEWyovqWc-PCrBE4BIo8M3vaUMTGwrWitD6yra2RgNbAi_Sk-nhB_z8Ar5gP0jIVW1mHl18s2Zyb3it9A5FQCXDEvhOejjMQ/s1600/IMG_5536.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik_0bE64QaSBa4tFM8CYfShToqlC8aGUoQk5R-Dp7f5hoVEWyovqWc-PCrBE4BIo8M3vaUMTGwrWitD6yra2RgNbAi_Sk-nhB_z8Ar5gP0jIVW1mHl18s2Zyb3it9A5FQCXDEvhOejjMQ/s320/IMG_5536.JPG" width="320" /></a></div>
<div class="MsoNormal">
No disrespect intended to the amazing doctors we have on our
team….I value their expertise and knowledge more than I can say…..but without
THEIR team to back them up, even the best doctor is less than.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I always say that the nurses are on the front lines. They
are the face and the voice on the other end of the line that I need to depend
on. I am regularly amazed at the effort they put in to taking care of my
family, and cannot imagine this journey without them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Before last summer, I was already a fan of nurses. What I
saw in the ICU though, that convinced me that these amazing people really are
angels walking among us. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A big thank you to all our nurses, for all you do.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPZ-ib2ixq8HAXB1HBPZsnxYBBUr0NZvskukcd6xcJocxUuCQvGLyoLXRxqZaljmz3sTULsBLDP73J7X4aizca7DuugDqZl8wyhMXdF9uXzmFf35PJ2qTJWS6IZU66oaHgXhV5bg84Km0/s1600/IMG_5540.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPZ-ib2ixq8HAXB1HBPZsnxYBBUr0NZvskukcd6xcJocxUuCQvGLyoLXRxqZaljmz3sTULsBLDP73J7X4aizca7DuugDqZl8wyhMXdF9uXzmFf35PJ2qTJWS6IZU66oaHgXhV5bg84Km0/s320/IMG_5540.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-56886442038660836552013-05-06T13:36:00.000-05:002013-05-06T13:36:01.369-05:00Another Milestone (of the Bikey kind)
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXKlnFaHRQH9pAukc9LN7JOqq5qOyJZQLwPvVzQ1SSYnR19sErMw0SxIrEhz96iYmisA3Gt-lCsZWAawyaIIAONgzTYfzvsRvncWQtOL26tOyt9Aw71-Lhay2TZsI2IgtGlMrg_E7F-s/s1600/IMG_5530.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXKlnFaHRQH9pAukc9LN7JOqq5qOyJZQLwPvVzQ1SSYnR19sErMw0SxIrEhz96iYmisA3Gt-lCsZWAawyaIIAONgzTYfzvsRvncWQtOL26tOyt9Aw71-Lhay2TZsI2IgtGlMrg_E7F-s/s320/IMG_5530.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Saturday, thanks to some very special people, Michael’s new
bike was handed over to start its new life in the McNair household. She is oh
so pretty.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdS1G82DkYC4X4TmBOXA_i-ywanHUHE3hAYM3x2t4uAvpuN36cy_s4ykzP6zFo1JJi477X4tqj8Dxd6ZVo5Fwff1IvYJE8IEQcoN0T7A9Hm2RX0bR0_ln5ggHTAq9Fl4uLkUA0WDOAEWY/s1600/IMG_5520.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdS1G82DkYC4X4TmBOXA_i-ywanHUHE3hAYM3x2t4uAvpuN36cy_s4ykzP6zFo1JJi477X4tqj8Dxd6ZVo5Fwff1IvYJE8IEQcoN0T7A9Hm2RX0bR0_ln5ggHTAq9Fl4uLkUA0WDOAEWY/s320/IMG_5520.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Some of those special people met the family at Dallas Bike
Works to surprise the old man, and we did. In an awesome, amazing kind of way!!</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUJrWDbPQXqB_8YMZqOPQKIfjuh8SNh4986kkD82Uw6mmWT7-hJ-Idicj_88SVGR3nZtz6ehPWH9iqMgWu1Zf-30Qh0g4eclxMbMxPDZTfgFJc6MpT2X4XLmov2AWT3oExqwJcuU5ncHA/s1600/IMG_5521.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUJrWDbPQXqB_8YMZqOPQKIfjuh8SNh4986kkD82Uw6mmWT7-hJ-Idicj_88SVGR3nZtz6ehPWH9iqMgWu1Zf-30Qh0g4eclxMbMxPDZTfgFJc6MpT2X4XLmov2AWT3oExqwJcuU5ncHA/s320/IMG_5521.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
A quick ride around the parking lot brought a BIG smile.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
After formalities were taken care of, we were all off to the
house for a little celebratory cook out!!<span style="mso-spacerun: yes;">
</span>As I shared on FB, this here…..</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLQ3zyx2NjDg_4glOuL4f5zUq1rfSjIvSzvdQ23h0J9R7u_V8dTi6iwufxryh0o7XnxUEzzhS4v-vl9-Tq_85oeL-qNac2OfVyNbGhkDfoOYjZOOl8yqMGIK7ieVo3BykBxA7YzSaScyc/s1600/IMG_5523.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLQ3zyx2NjDg_4glOuL4f5zUq1rfSjIvSzvdQ23h0J9R7u_V8dTi6iwufxryh0o7XnxUEzzhS4v-vl9-Tq_85oeL-qNac2OfVyNbGhkDfoOYjZOOl8yqMGIK7ieVo3BykBxA7YzSaScyc/s320/IMG_5523.JPG" width="240" /></a></div>
<!--[endif]--><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<i>THIS</i><span style="font-style: normal;"> is how a
backyard should look!! </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiog4q3PfNT6h60doD6mpbY0q_9CP5Ts-xOLuZ9lqdNrSfpqRJrAIEiHC4FYBhtxxsY-Pmt4qU6vDM1HDSpkVWoXP0h2hPphngHIE9fJkmYHwUmsSM7Zhb7ALEu639Oc_HfaLMu7n_1aWk/s1600/IMG_5526.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiog4q3PfNT6h60doD6mpbY0q_9CP5Ts-xOLuZ9lqdNrSfpqRJrAIEiHC4FYBhtxxsY-Pmt4qU6vDM1HDSpkVWoXP0h2hPphngHIE9fJkmYHwUmsSM7Zhb7ALEu639Oc_HfaLMu7n_1aWk/s320/IMG_5526.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
It was a lovely evening that included a few jaunts out on
the new wheels with friends….there is nothing better!!!</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjfPLNJKTXlp8gwz7zowyAJmtph5-_-UIe2Y_IvqYiqritiiXSczgL7D_l0zpCLEYeDTMHQxeF3zKzcDvvXSY73lHQRZBSBtayl61Gc2MPqgjJXM4QLeVUG5Fs9YeYnHeGPiGB03t3tpw/s1600/IMG_5529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjfPLNJKTXlp8gwz7zowyAJmtph5-_-UIe2Y_IvqYiqritiiXSczgL7D_l0zpCLEYeDTMHQxeF3zKzcDvvXSY73lHQRZBSBtayl61Gc2MPqgjJXM4QLeVUG5Fs9YeYnHeGPiGB03t3tpw/s320/IMG_5529.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<!--[endif]--><br />
<div class="MsoNormal" style="text-align: center;">
Sunday, a quick run to the store for some last minute things
needed for the second party of the weekend (I had a Lia Sophia jewelry party),
became another excuse to get out on the new wheels. He is a happy man!!</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6UjWFXogsREWoKvKmCKxpwWpmg1HvSSZBkYdZwWCKWpNVzOsRV2hXgbdtcuTqOKJ03ZhU28S3bEXP9pTsKPI3WIJzDvfY_iJmy-QZ-8K_kfAmEvnz7ZnqckCuJFSnv9TENivqdSxUOM/s1600/IMG_5532.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6UjWFXogsREWoKvKmCKxpwWpmg1HvSSZBkYdZwWCKWpNVzOsRV2hXgbdtcuTqOKJ03ZhU28S3bEXP9pTsKPI3WIJzDvfY_iJmy-QZ-8K_kfAmEvnz7ZnqckCuJFSnv9TENivqdSxUOM/s320/IMG_5532.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<!--[endif]--><br />
<div class="MsoNormal" style="text-align: center;">
Another example of how amazing the Dallas cycling community
really is. We are so blessed to know them and be a part of this group of
people.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-27155658595718456182013-04-29T19:20:00.001-05:002013-04-29T19:20:58.832-05:00WC Day 29: It’s Always Something…..<br />
<div class="MsoNormal">
Hospital prep again!! Argh….why didn’t I make notes when
getting Madison ready a couple of weeks ago?</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This time, Chance is going inpatient.<span style="mso-spacerun: yes;"> </span>Not sure if you all remember, but he
and Abby had an appointment with our GI doctor when Madison was inpatient, and
from that appointment, tomorrow’s admission is taking place. After some talk
about where we go from here in dealing with Chance’s large bowel dysmotility,
it was decided that we need to do Colonic Manometry again, and see exactly
where things stand. So at least this admission is a little more “planned”, as
if that somehow makes it less stressful, right!?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To do the Colonic Manometry, we need to admit him the day
before and do a mega clean out while supporting him with IV fluids. Wednesday
morning he will go under anesthesia and they will place the probes needed for
the testing. Because anesthesia can slow intestines down, we then need to wait
till the following morning (Thursday) before doing the testing. The testing Thursday
will take a big chunk of the day, but then we should be discharged and head
home.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This testing is not fun from start to finish…..clean outs
suck; anesthesia makes Mom worry; laying flat on your back and not being able
to get out of bed for the better part of 2 days has it’s issues (although I
wouldn’t mind some forced bed rest sometimes); and getting through the testing
itself is not pleasant. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am proud of my son. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This was HIS decision, and he made it even knowing what it
means. This will be his third time getting through the testing. He knows the
information is invaluable, and that we need it to guide treatment decisions, so
he is going into it with a good attitude.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He is a pretty awesome young man.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><u>Now, in other news…..</u></i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Madison is continuing to heal like a (piggy) super star!! My
mom (who is again saving our butt by being here with the rest of the kiddo’s
while I am away) will bring Madison to me Wednesday for her 3 weeks post op
check up. This latest dressing allows for us to see more of what is going on
there, and as of Saturday, I swear it’s all but healed!! Our other big news on
the Madi front is that my amazing daughter learned how to do her own dressing
changes, even with some changes that made it a little more complicated, so she
was able to go out with her siblings and visit my mom and dad for a few days!!
I can and do a whole lot of medical care around here, and mostly with pleasure,
but really do not like wound care. Not sure why, but it is one thing that will
get to me faster than anything else…LOL. So for Miss Madison to be able to do
it herself, just means it’s not all on me, and I like that….a lot!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Miss Abby is my favorite child right now, with little drama
(well the medical kind) and lots of hugs for her tired mom. She completed a
painting for Wish Night last week and did an amazing job. We cannot wait to see
how it does at the auction. I may have to pay her to keep being drama free for
me<span style="mso-spacerun: yes;"> ;-)</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And finally, Michael, my love. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He, like Abby, is mostly drama free, medically speaking.
Also like Abby, drama in general still sometimes happens. I still love him
though ;-) He took a nice long ride yesterday with friends, and thoroughly enjoyed
himself, even if the ride was cut a little short for him due to ostomy
appliance issues. A dear friend wrote about the ride on bike forums and said it
so well, I am going to quote him here…..<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoIZS12IIio0kyKuu5xdgwoWEG_wpdK-W_8hyphenhyphenyEvfwyJ4LrvVflJb9J_gsrClqzMmCgP_3l1tfstvQ8g9KbeZNX1cS4SOadzmXruD8n4puYTx4fwtASwM66djgxdoZ3WJ0fFEjkQl12To/s1600/michaelmcnair1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoIZS12IIio0kyKuu5xdgwoWEG_wpdK-W_8hyphenhyphenyEvfwyJ4LrvVflJb9J_gsrClqzMmCgP_3l1tfstvQ8g9KbeZNX1cS4SOadzmXruD8n4puYTx4fwtASwM66djgxdoZ3WJ0fFEjkQl12To/s320/michaelmcnair1.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #262626;"><i>"The old worn out saw about
a picture being worth 1000 words would apply to that photo above. I bet there
are 1000 people who if they saw that picture would smile from ear to ear. All
day. All week.<o:p></o:p></i></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626;"><i>That's what courage looks
like. I could never do that. Michael McNair can. He did. That takes some kind
of special spirit to overcome adversity and soldier on. It was 11 months ago
that through the large bay windows of Baylor's ICU unit that I looked down on
the spot along the Wetland Cells near the Freedman's Town of Joppa, Texas where
we were yesterday. Michael was on life support in the worst way, on a breathing
machine and in a coma after being hit by a car while riding his bike. Month and
a half in a coma. With all the noise of the machines keeping him alive, frankly
I thought this day would never come. But it did. The sun never shown brighter.
The wind never calmer. The wildflowers in full bloom."</i></span><span style="color: #262626;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626;">It certainly made me smile from
ear to ear…..thanks for sharing this, <a href="http://dallastrinitytrails.blogspot.com/">Ben</a>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #262626;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #262626;">So, a first ride back down to some his old stomping grounds. </span></div>
<div class="MsoNormal">
<span style="color: #262626;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #262626;">Another first since the accident happened over the weekend.....all three of our children were gone from home, overnight, at the same time, for the first time since last spring (at least). Yes, Michael and I enjoyed some child free time together!! </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626;">Michael saw a new PT on Friday
and should be starting some sessions with her soon. He see’s the orthopedic doc
on Thursday, and barring anything unforeseen, we should be able to get the needed
script from him then, and can get going with this. I have never had to work so
hard getting something dealt with as I have this cramping issue with Michael’s
shoulders. I am reminded sometimes how much more frustrating adult care is then
pediatrics…..and that is sometimes saying an awful lot. I <b>think</b></span><span style="color: #262626;"> we finally have something happening though, and will
just be happy when it’s a done deal.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626;">Okay…..dinner is waiting for me,
so I am going to go eat and then start packing for tomorrow’s admission. As always,
thanks for the thoughts and prayers.</span><o:p></o:p></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-25036821890827788642013-04-24T16:31:00.000-05:002013-04-24T16:31:15.084-05:00WC Day 24: Our Guinea “Pig”<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHxB70MvmrYnhyWuj187iX_JnJeV2bXyPn-aw2pU50NsL9Lk5HzhA9m6llYgVnSw6eoPp6coPuXc3z1Ddz-pOltrrTHKZmYc8Pqk4FnbtqkZbO50E1RerhyZZxQnsD9qYOpQctsH6S2RE/s1600/IMG_5429.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHxB70MvmrYnhyWuj187iX_JnJeV2bXyPn-aw2pU50NsL9Lk5HzhA9m6llYgVnSw6eoPp6coPuXc3z1Ddz-pOltrrTHKZmYc8Pqk4FnbtqkZbO50E1RerhyZZxQnsD9qYOpQctsH6S2RE/s320/IMG_5429.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Madi Day 2 after surgery</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
Two weeks ago, Madison had surgery. As I shared here before,
she had developed an abscess in her abdomen, around her <a href="http://kidshealth.org/parent/system/surgery/g_tube.html">g-tube</a> (feeding tube)
tract, back in September. Three weeks ago it flared again, for the third time,
and this time it developed <a href="http://en.wikipedia.org/wiki/Fistula">fistulas</a> (small tracts going from the internal
abscess to the surface of the skin). That it was reoccurring, and now producing
fistula’s meant we were not actually killing off the infection, just calming it
down, and our only resort was to do surgery.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The treatment for fistulas is rather barbaric (at least as
far as I am concerned). They use a guide wire to locate the path of the
fistula, then cut down to the wire……<i>and then leave it open to heal from the
inside out.</i><span style="font-style: normal;"> It’s the only foolproof way to
ensure the fistula closes, but ugh on open wounds, especially open wounds right
by a g-tube site.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My biggest concerns, in no particular order, were 1.
Pain….as much pain as the abscess caused, I was understandably concerned that
an open incision was going to hurt. 2. Infection…..specifically staph, as the
kids are all colonized with it, and it’s something we fight regularly, and it
always involves an open wound. And 3. Healing…..because of Madison’s connective
tissue issues, healing can be a challenge and always leaves nasty scars and
such. I shared these with our surgeon, not totally sure he was taking it all as
seriously as I considered it to be. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>I was wrong.<span style="mso-spacerun: yes;">
</span>He heard me</i><span style="font-style: normal;">. </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When the surgeon came to talk to me after the surgery, he
shared that with Madison’s special issues in mind, he was trying something new
with her. He said it was a product, interestingly enough, made out of <b><i>pig
bladder</i></b><span style="font-style: normal; font-weight: normal;"> that was
supposed to help healing happen more quickly and he was hopeful it might make a
difference for our girl. With that, we were off to our room, where I spent some
time trying to figure out what this stuff was. Google “</span><span style="font-weight: normal;"><i>pig bladder wound
healing</i></span><span style="font-style: normal; font-weight: normal;">” and there are quite a few articles on it, all of which made it sound
pretty stinking promising!! It was originally used on war veterans with wounds
that were not healing as they should, and were frequently risking the limbs
being salvageable. This “pixie Dust” as one of the soldiers took to calling it,
is capable of facilitating the growth of not only skin, but muscle and nerve!!
I was kind of excited about the prospect of what this might do for Miss
Madison.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The following day I shared with the surgeon that I had read
up on this “new” product (it’s actually been around for a little while now) and
that I was excited by the prospect. He cautioned that he wasn’t really sure
what it was going to be capable of doing, but that he liked the idea of leaving
the site alone, and was remaining skeptical on the wound healing part of it
till he saw it with his own eyes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Apparently the company that makes “pixie dust” has been
talking to him for some time about trying it, but Madison was the first patient
he has had that he thought this might help. As he should have been, he was
reserving judgment till he was able to see what it was capable of. With that, I
didn’t get my hopes up too high, and we left the hospital with care
instructions, and a 6-8 week timeline on healing. We also left with a kid that
had essentially no pain at all from the site.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Care instructions really could not have been easier. Twice a
day we remove a 3x3 split gauze that’s covered with tagaderm, and then reapply
the same. There is no cleaning and no touching of the wound site. There is a
thin wound covering that stays in place over the wound and is only removed and
replaced when we see the surgeon or his nurse.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the one week mark, we returned to the surgeon’s office to
see how things were going. As soon as our surgeon saw the progress that had
already been made, he was clearly impressed and started talking to the rep from
the company about some other difficult patients he has. I knew then that it was
apparently working better than expected, and was thrilled to hear it!! Looking
at the site didn’t do much for me….I did not see it immediately after the
surgery, so my ability to compare wasn’t good. But from the doctors response,
it was clear a ton of progress had already been made. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I could see that day made it difficult for me to be
able to imagine how this was going to go. The fistula she had went directly
into the g-tube tract, so to cut down to it meant we essentially lost one whole
side of her g-tube tract. At this first visit, this was still very much the
case, so rather than the circle usually there, it looked more like an ice cream
cone, with a scoop of ice cream on top. The idea that this was going to somehow
heal and leave us with an intact g-tube site was difficult to imagine.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As they did the day of surgery, another application of
“pixie dust” was done at this first post surgery visit. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So what is this stuff?? In layman’s terms, it is pig bladder
cells (any animal or organ can apparently produce something similar, but pig
bladders are apparently cheap, so they are used) that become a matrix that
encourages cell growth. It seems to be similar to what we hear is possible with
stem cells, and from the reading I have done, it encourages whatever cell
growth is needed where it is put. So if it’s muscle, nerves, skin, or all
three, these are encouraged to grow where this matrix is introduced. It really
is fascinating!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So today was our second visit to see how things are
going.<span style="mso-spacerun: yes;"> </span>This time I had something
to compare it to, and took a quick look at the picture I had taken last week so
I could fully appreciate any progress that had been made. All I can say is
WOW!!!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One short week later she has a clear g-tube tract and there
is not even that much healing left to take place going out from the site!!!
Things looked so good, we did NOT need to do another application of pixie
dust!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are TWO weeks out from a surgery that they expected to
take 6-8 weeks to heal, and I won’t be shocked if it is almost there by next
week. We have had no pain, no infection, and at least at this point, it looks
like the healing is going to not only be faster than we could have ever hoped
for, but “cleaner” and nicer looking than we could have hoped for!! This stuff
really is amazing!!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And now, our precious daughter will always be known as our
guinea pig, or that she has a little piggy in her....LOL<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For those that like details:</div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
About <a href="http://www.acell.com/matristem-info.html">MatriStem</a><o:p></o:p></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<br /></div>
<div class="MsoNormal">
MatriStem devices are comprised of naturally-occurring
porcine urinary bladder matrix (UBM). The bladder is harvested and
processed to remove the muscle and submucosa tissue layers. The product
is disinfected, packaged, and sterilized via electron beam radiation. The
resulting product is a non-crosslinked, completely resorbable, acellular
extracellular matrix scaffold with naturally-occurring collagens, featuring an
intact epithelial basement membrane surface and tunica propria surface. MatriStem
contains a collection of proteins arranged in a three-dimensional structure not
currently available in synthetic materials. This ECM scaffold technology
is recognized by its bimodal surface characteristics. The intact basement
membrane surface is hypothesized to contribute to epithelial and progenitor
cell attachment and proliferation. The lamina propria surface may be
conducive for integration into the wound bed and host connective
tissues. The product completely incorporates into the surrounding
tissue during the healing process and leaves new tissue where scar tissue
formation is normally expected. The result is constructively remodeled,
site-specific tissue for a variety of medical procedures.<o:p></o:p></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-38980925963702008392013-04-22T12:04:00.003-05:002013-04-22T12:04:46.858-05:00WC Day 22: The Role TV Plays, & Other Stuff
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<br />
<div class="MsoNormal">
I have a love-hate relationship with TV.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Typically, as soon as Michael leaves in the morning, it’s
turned off and isn’t looked at again till evening. Whereas, when he is here, it
has to be on all the time…..enough to make me crazy at times.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I honestly have too many other things on my mind most of the
time to get the enjoyment, or escape, that TV could provide me. And clearly, I
am not one of those people that works/thinks better when there is some kind of
background noise going on. It’s one of the greatest hindrances to me writing
more…..I need peace and quiet to think, and let’s face it, neither of those two
things happen much around here.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This last week has only increased my love-hate relationship
with it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for the chance to know what is happening
elsewhere, and watched the tragedies in Boston and West unfold, feeling the
heartache I know we all did. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the same time, I was reminded how <i><b>saturating</b></i><span style="font-style: normal;"> it can be. We have this insane ability now to be a
part of every second of what is going on. It sometimes feels like it’s too
much.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It reminded me of last year, immediately following Michael’s
accident. I found that I simply could not watch television, and didn’t watch a
thing till we were well into rehab. The shows felt frivolous, and the news was
often too heavy for me. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our Houston trips are my other escape. For one week, every
other month, I am disconnected from it all…..and I LOVE it. I cherish the time
of just not knowing. With no TV readily available, it’s easy to make that
escape. I am still connected enough, via FB, etc, that I am going to know if
there is something big going on, but for a handful of days, I get to ignore the
sometimes overwhelming stream of information coming in. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I like it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
~~~~~~~~~~~~~~~~~~~~~~~~~~~~</div>
<div class="MsoNormal">
<b>Boston & West</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our hearts, thoughts and prayers are with everyone affected
by these tragedies. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
~~~~~~~~~~~~~~~~~~~~~~~~~~~~</div>
<div class="MsoNormal">
<b>The Writing Challenge FAIL</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I could make a handful of excuses, all quite valid, but
instead I am going to look at what this challenge has done. I am writing again,
<i>feeling</i><span style="font-style: normal;"> it even, and that is ultimately
what I was hoping this challenge would provide me. I should have known better
than to think I would, or could, manage to write daily. There are just too many
distractions around here…..very worthy distractions, mind you, but distractions
nonetheless. I am happy to share that my last post was number 100, and that I
am feeling like the writers block has lifted. Not to give up on this challenge
altogether, I am going to try for the rest of the month to get my one post in a
day, but that depends on my family cooperating….LOL.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
~~~~~~~~~~~~~~~~~~~~~~~~~~~~</div>
<div class="MsoNormal">
Madison Update</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I want to share more about how my girls healing is coming
along, but it’s kind of interesting and deserves it’s own post, so for
now, I<span style="mso-spacerun: yes;"> </span>just wanted to share that
she is doing well and we are pleased with how things are coming along.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Watch for a post in the coming days about how my girl has a
little “piggy” in her now ;-)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-1334770243875642772013-04-17T01:38:00.001-05:002013-04-17T01:38:47.487-05:00WC Day 16: Prayers for Boston
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<br />
<div class="MsoNormal">
I have been watching some of the coverage from the tragic
events of yesterday in Boston. These kinds of things always hit hard, but
somehow they are harder for me now. The heroism is more glaring too though. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I
know this has been shared all over FB, but I also know it made me stop for a
moment and find some peace in this tragedy.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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<!--[endif]--><br />
<div class="MsoNormal" style="text-align: center;">
<i>Finding the helpers.</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We can only watch so much, but I happened to catch one of
the trauma surgeons speaking yesterday.<span style="mso-spacerun: yes;">
</span>It took me back, and as I watched him answer questions, I thought of
Michael’s trauma surgeons, and how incredible these doctors are.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know about anyone else, but before Michael’s
accident I had no idea this specialty existed…..and I was pretty sure I knew
just about every specialty that exists, and that we have seen almost all of
them. I had, thankfully, never had the need to meet a trauma surgeon before.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All I can say is WOW. These doctors are amazing. They are on
the front lines, making life and death decisions, over and over and over again.
For more than a month I watched as they came in each day and pondered my
husband and what he needed. Determined what tweaks could and should be made,
contemplating all the different factors coming into play, and being prepared to
make more changes at a moments notice. I had no idea that there was not a herd
of specialists dealing with their own area, but that there was ONE doctor who
had to know enough about everything to make split second decisions that could
mean the difference between someone living and dying.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They are incredible doctors, doing a job I cannot even
imagine. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My thoughts and prayers are with the trauma doctors there in
Boston. They are with the ICU nurses caring for those critical patients. They
are with each and every person that has been touched by the events of
yesterday.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-21180438142292470592013-04-11T22:39:00.000-05:002013-04-11T22:40:41.292-05:00WC Day 11: Surgery Update<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzT42Tsh3SejnzeQsB2oCciLbhrMeKvVCsrWu0jYwWJHMCIZU-T0vjFSOhIPPPca1HXt3LXpk3bC9PbW1Y_9A7AEYCauc2BKq05bLYa0xLUD1As5YIylNZFV5zcQJ3cfOqglULAHlImzU/s1600/IMG_5429.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzT42Tsh3SejnzeQsB2oCciLbhrMeKvVCsrWu0jYwWJHMCIZU-T0vjFSOhIPPPca1HXt3LXpk3bC9PbW1Y_9A7AEYCauc2BKq05bLYa0xLUD1As5YIylNZFV5zcQJ3cfOqglULAHlImzU/s320/IMG_5429.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She is comfy</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
While it was a really (really, really) long day, it could
not have gone any better!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So many people have to come together to make something like
this go so smoothly. When several go above and beyond, the comfort it provides
my soul is pretty amazing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our surgeon heard my concerns about Madison’s poor healing
and was able to acquire a relatively new, and very exciting product to use
in hopes that it would help. It’s previously been used on much larger wounds,
but when he approached his supplier with our situation, they agreed that it
would be worth a try. We are all anxious to see how this goes, and will have
some idea next week when we see our surgeon again for follow up.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They were able to arrange it so that we had our pain
specialist handle anesthesia, meaning we had a familiar face this morning, who
knows Madison’s history, and even better yet, came here from our hospital in
Houston, so she knows our mito protocol inside and out. It was the easiest part
of our morning, and that is not always the case.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our nurses, in pre-op, recovery, and since we have been on
the floor, have been awesome. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Several of our friends came by for a visit, and the noise
coming from this room; from laughter, to singing; has been something else much
of the day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My mom saved my butt and was able to get Chance and Abby
over here this afternoon for an appointment they needed to make it to, and is
at the house helping out on that end until Madi & I can get home and
relieve her. We could not do all we do without her!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Madison was a trooper, as always, and showed no fear going
into this.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then the prayers really kicked in……</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The area that needed to be excised was more manageable than
we could have hoped for!! From what the surgeon tells me, it is a little larger
than a quarter, and filled with the “pixie dust” (new product I referred to
earlier), and now we just have to wait for it to heal.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Madison tolerated the anesthesia well. She woke up insanely
chatty, and it was adorable!!<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
She overall looks pretty good….a little strain on her body
is showing, but it’s been very manageable……She got some extra fluids via IV,
and that always makes her feel better…..and most remarkable…..</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She hasn’t had ANY pain all day.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t get it, but I am NOT complaining.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We should be out of here sometime tomorrow morning, and will
be so happy to be home. In the meantime….I need sleep!!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-21248084232670885732013-04-11T00:28:00.000-05:002013-04-11T00:28:21.954-05:00WC Day 10: Our World…..& Surgery
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<br />
<div class="MsoNormal">
In an ideal world, I would be sleeping right now. In an
ideal world, I would not be busy prepping for Madison to have surgery in the
morning, and packing for at least a few days inpatient (in order to ensure we
are only there for one). In an ideal world, I would not be behind on my posting
challenge here.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ah, to live in an ideal world.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;">In our world….<o:p></o:p></span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am up, but am hoping to get an hour or two of sleep before
we have to head out.<span style="mso-spacerun: yes;"> </span>A 3:15 wake
up call comes WAY too early. Thankfully the parent beds at Cooks are actually
pretty comfy, so I know I will sleep well tomorrow night.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am trying to think of everything we need to take with us.
Packing our clothes and toiletries is a no-brainer, but trying to make sure I
have the medical supplies and equipment, some of which we will need, and some
that we probably won’t but I need to have with us to be sure, is less straight
forward. Very thankfully, we are not inpatient all that regularly, so I am
rusty and worried I am forgetting something.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have just finished updating summaries so I can make sure I
can accurately go over Madison’s medication list, allergies, surgeries, etc and
so on when we get there in the morning. Ya know, when I am going to be tired
and need all the help I can get.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Included were summaries for Chance & Abby too, because
they have an appointment with GI tomorrow. I will already be there, so we might
as well keep the appointment!!<span style="mso-spacerun: yes;">
</span>Besides, we have some stuff to talk to our favorite doctor about that
really shouldn’t wait. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have driven to Ft. Worth 5 times in the last 7 days, and
am headed back in the morning.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No less than 6 different doctors on Madison’s team had to be
contacted about the surgery tomorrow. Some with questions, and some to just let
them know we would be there in case they are needed.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The call with anesthesiology lasted for almost an hour as we
went over her history and I answered all their questions.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;">At the same time, in our world…..</span><o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful to be on the schedule first thing in the
morning, even if it means little sleep and early wake up calls. First cases are
rarely delayed; we can avoid fasting issues with Madison that otherwise might
be a problem; and all are fresh and ready to go. It is always worth it to go
this route for us.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am insanely grateful that we are so seldom inpatient that
I have to really <u>think</u> about what it is we need to take.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful that getting the kids summaries together and
updated doesn’t take much time; and that I am able to accurately share the
kid’s information because of them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for my mom, and all the help she gives us. If
it were not for her, Chance & Abby would not be able to make it to their
appointment tomorrow. She will be taking care of the crew at home for me, and I
am so thankful!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for the doctors we were seeing the first three
times we made the trek to Ft. Worth this last week; and that the other two
times were so Chance and I could attend our advisory council meetings, and give
back to this hospital that means so much to us.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for all 6 of those doctors offices I called
today. Each of them took the time to make sure we had what was needed, and to
assure me they are there for us.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for how thorough anesthesiology was today, and
that they take the time to make sure they are safely caring for my child.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<i><span class="Apple-style-span" style="font-size: large;">Our world…….it may not be “ideal”, but there is still an
awful lot to be grateful for!!</span><o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Madison is on the schedule for surgery at 7:00am. I am off
to finish up and get some sleep. I will update here tomorrow. Love & hugs
to all!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com0tag:blogger.com,1999:blog-3259835718939993072.post-62094483959916675712013-04-08T10:11:00.001-05:002013-04-08T12:07:08.620-05:00WC Day 8: Moving Past It<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO-AJaz8KliVOFlNALyjL5UK3wp8zbRQE0TBcK4bzUd27j0yaE9Kj0_UUPBJWlVIigU2cI8G826RXaOwZ5qrbKtdsoSsqOVoLGnZae2b_Z_GQTuefFS9MzwFp8nrHWLX4UzRkjeGZsGY4/s1600/IMG_5405.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO-AJaz8KliVOFlNALyjL5UK3wp8zbRQE0TBcK4bzUd27j0yaE9Kj0_UUPBJWlVIigU2cI8G826RXaOwZ5qrbKtdsoSsqOVoLGnZae2b_Z_GQTuefFS9MzwFp8nrHWLX4UzRkjeGZsGY4/s320/IMG_5405.JPG" width="240" /></a></div>
<span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">I wonder sometimes if you all ever think to yourselves that Michael's accident is mentioned too regularly, that perhaps its time to "move on", or even that I am "milking it" in some way (it's okay if you have), so I thought maybe I should share where I am with it.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">I am SO ready for there to be a time when it somehow isn't a part of almost every day, and everything we do.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">I am ready for the day when it doesn't somehow enter into conversation regularly; for the day when life events aren't remembered in the BC (before accident) and AC (after accident) mode; for the day when there are not memories I am having to share with Michael because he was unconscious when they happened; for the day when I feel the appropriate amount of concern for the day to day medical stuff here, and not that if it's not "ICU worthy", it's just not that big of a deal; for the day when we get to feel like it isn't necessarily our "defining moment"; and for the day when I am not caught off guard when I feel that catch in my throat as something (anything) triggers an emotional reaction I am not expecting.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Not because these are all "bad" feelings to have because, Lord knows, they are keeping us grateful. But these things, I feel like, are keeping me from "moving on", what ever moving on is in a case like this.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">At the same time, I don't ever want to <b>not</b> share how Michael is, or our story, with those that care or might gain some strength or faith from it; I don't want to ever <b>lose</b> the perspective that getting through this journey has given us; I don't want to <b>forget</b> the memories of what was happening when Michael was unconscious, because there was so much good during that time too; I don't want to ever <b>forget</b> that things could be so much worse, medically speaking, when going through something. Just need to find the balance with it all; I don't want to <b>not</b> be defined by this moment in time....we got through it with optimism, love, and a peace only God could provide, with the help of the amazing "village" we are blessed to be a part of; and I don't even want to <b>not</b> feel the emotions, just maybe not be so caught off guard by them.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">How is that for a conundrum!!</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGyY8HlWxNFp6PbzQhrNzAFC1IenquFIpFmmeefpuTVGVboQ6RcQN1E7KwWpOmEOFF2fl9-viQpdwAZ0Zb87RA7H0mC_cB_LolYHeXr60ZZi3kFh7kGpt5FBi1kbgXHDYywXOAVH1Y4G4/s1600/IMG_5362.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="261" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGyY8HlWxNFp6PbzQhrNzAFC1IenquFIpFmmeefpuTVGVboQ6RcQN1E7KwWpOmEOFF2fl9-viQpdwAZ0Zb87RA7H0mC_cB_LolYHeXr60ZZi3kFh7kGpt5FBi1kbgXHDYywXOAVH1Y4G4/s320/IMG_5362.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PMTRC Spring Fling<br />
Love those faces!!</td></tr>
</tbody></table>
<span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Trauma is a weird thing. It permeates everything in some way. It took our world, turned it upside down, shook it around, and then dumped us out on the other side. I would have thought the fact that we dumped out on the other side relatively unscathed would have eased some of the emotional impact....and I am sure it has....but apparently there is still a trauma to work through.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Perhaps it's the insecurity that comes when something like this happens. It's like any other worry we all have about our loved ones, the one we keep tucked away because you cannot <i>really live</i></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><i> </i>if your worried about someone you love dying. When your faced with one of those fears you have so carefully tucked away, it's difficult to not worry that one of those other ones you've allowed yourself to think only happens "to other people" isn't really something to worry about happening to you. It is, at it's base, facing mortality, really up close and personal.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">In talking with the few I have allowed myself to share some of the feelings I am having with, it appears that at least some of these feelings are similar to what they went through when they <u>lost</u> a loved one. On the one hand, I get that "trauma is trauma" and perhaps these are normal (whatever normal is) feelings to have after one.....on the other hand, I <u>did NOT</u> lose Michael, and it bothers me (okay, it pisses me off) that, a) I am having to work my way through this emotional maze, and b) that I am even playing on the same field with others that have lost someone they love. It seems wrong, and even dare I say, presumptuous of me to think I have any right to, for lack of a better word, grieve alongside them.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Maybe these feeling are grieving the loss of innocence, as silly as that sounds. One would think I would have lost all "innocence" a long time ago!!</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">The truth is, I don't know. I am working my way through it all as best I can, and having faith that it is going the way it is supposed to. Someday the balance will come. Right?</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">The next month or so, as we approach the one year anniversary of that day, I am anticipating some ups and downs, and more talk about it than anyone probably wants to hear. Forgive me ahead of time please. Skip over it if your ready to move on, and know I completely understand.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif; font-size: 13px;"><br /></span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif; font-size: 13px;"><br /></span><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Know though, our gratitude is immeasurable, and pervasive, and I pray, will never, ever lessen. Each moment we have together, every memory made, is priceless....even the difficult ones. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"><br /></span></span>
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">We are blessed to have you all traveling this journey with us.</span><span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;"> </span></span><br />
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<span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">Edited to add:</span><br />
<span class="Apple-style-span" style="font-family: arial, helvetica, sans-serif;">I realise now that I have written all this out that I am quite possibly projecting my own frustrations with myself onto others, which was not my intent. No one has said a word about how I am, or should be, handling all of this. Logic and emotions don't always go hand in hand, so while logically I know this is an individual journey and there is no right or wrong way to go about it, and that I would never be thinking these things about someone else's journey, emotionally I couldn't help but wonder if you all were as tired of it as I am. I feel better for having said it, for getting it off my chest, but not because it sent a message to someone else, more because it reminded me where I am and where I am headed.</span>The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com3tag:blogger.com,1999:blog-3259835718939993072.post-22590192670210236172013-04-08T00:16:00.000-05:002013-04-08T00:16:24.800-05:00WC Day 7: Defying the Odds
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Michael had a CT scan and xrays done on Friday. He is having
some issues with his shoulders cramping up, and we are checking to make sure
it’s not a nerve issue. The radiologist remembered him and shared that the last
time she saw him he was still in a wheelchair and in his c-collar. It’s been a
while!!</div>
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She went on to share that in her 14 years of doing this she
has seen a few with a broken scapula (shoulder blade), but he is the first she
has ever seen with both broken. When he shared this with me, it reminded me
what I had read about broken scapula’s and I asked him if I had shared why it’s
so rare? Unbeknownst to me, it is really tough to break your scapulas, and is
almost always associated with a significant blunt force injury. The
radiologists don’t see them often because the associated injuries are so
severe, not many survive.</div>
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Just another reminder of the odds we defied last summer.</div>
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Michael said something this weekend I thought illustrated it
well…..</div>
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He said he sometimes felt like we should be buying a lottery
ticket every single day…..and being happy as hell when we didn’t win. </div>
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We have already won the best lottery there is to win…</div>
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Life.</div>
<!--EndFragment-->The M'shttp://www.blogger.com/profile/04178923523617756793noreply@blogger.com2