tag:blogger.com,1999:blog-35713464341997665502024-02-07T04:01:20.380-08:00Kendall's Hopejocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.comBlogger421125tag:blogger.com,1999:blog-3571346434199766550.post-11317163322730383132016-01-11T11:36:00.001-08:002016-01-11T11:36:31.928-08:00Time Flies<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><span style="font-family: inherit;">It</span> has been
1 year, 7 months, and 22 days since my last blog post.<span style="mso-spacerun: yes;"> </span>Between work, my 15 year old (yes…15!) two
dogs, Kendall, Justin, Facebook, Instagram…well, blogging has gone by the way
side.<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">I realize
that I didn’t post about Kendall’s 1<sup>st</sup> grade year.<span style="mso-spacerun: yes;"> </span>So many wonderful things happened during the
school year for her last year.<span style="mso-spacerun: yes;"> </span>She
continues to thrive socially, drive her chair, progress in her literacy, use her
communication device, and vocalize her joy, anger, and excitement.<span style="mso-spacerun: yes;"> </span>She is sleeping better these days and her
health is relatively stable.<span style="mso-spacerun: yes;"> </span>With the
addition of a new continuous blood glucose monitor assisting us in her Type One
Diabetes management, her Hemoglobin A1c’s are the best they’ve been in
years.<span style="mso-spacerun: yes;"> Her vesicostomy has eliminated UTI's from our vocabulary, and Botox continues to delay our inevitable hip surgery. I don't talk about seizures. Ever. </span></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">While the
past year and seven months has been filled with much happiness, we have faced
some loss too. A couple February’s ago, she lost vision in her left eye
completely.<span style="mso-spacerun: yes;"> </span>This was a huge punch in the
gut for us.<span style="mso-spacerun: yes;"> </span>The short story is, she
developed a Strep infection that latched on to her shunt and it had to be
removed.<span style="mso-spacerun: yes;"> </span>The infection and trauma to her
eye was so great, it detached her retina.<span style="mso-spacerun: yes;">
</span>We did everything we could to save it, but just couldn’t.<span style="mso-spacerun: yes;"> </span>She is adjusting accordingly.<span style="mso-spacerun: yes;"> </span>She is so strong. </span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">This past
year I also lost my mom.<span style="mso-spacerun: yes;"> </span>Kendall lost
her biggest cheerleader.<span style="mso-spacerun: yes;"> </span>Every single
blog post I have written in the last seven years, I guarantee my mom was
somewhere in my house holding Kendall, rocking her, reading to her, massaging
her, singing to her, or praying for her.<span style="mso-spacerun: yes;">
</span>She did these things because she loved that little girl with every part
of her being.<span style="mso-spacerun: yes;"> </span>She also loved me the same
and wanted me to have breaks.<span style="mso-spacerun: yes;"> </span>She
frequently hugged me and held me encouraging me that I was doing a good job
raising my kids.<span style="mso-spacerun: yes;"> </span>There wasn’t a day that
went by that I didn’t talk to her and receive some words of encouragement.<span style="mso-spacerun: yes;"> </span>To say there is a void in her absence is an
understatement.<span style="mso-spacerun: yes;"> </span>My world stopped. </span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">The month
after my mom passed, our beloved nurse, Angie, who was with Kendall since she
was 14 months old, moved away.<span style="mso-spacerun: yes;"> </span>Another
loss that cut deeply.</span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">Grieving for
my mom opened my eyes to so many things.<span style="mso-spacerun: yes;">
</span>It changed my perspective on what is important to me.<span style="mso-spacerun: yes;"> </span>In times of loss, you really do see people’s
true colors.<span style="mso-spacerun: yes;"> </span>I received so much support
from so many people (and unfortunately, there were also people who I once
really cared about that I will no longer bother with ever again.) <span style="mso-spacerun: yes;"> </span>But mostly, I was overwhelmed with the
kindness shown by those who didn’t even know my mom, but wanted to be there for
our family.<span style="mso-spacerun: yes;"> </span>Donations in lieu of flowers
went to the Cook Children’s Foundation and were set aside for the sibling
programs.<span style="mso-spacerun: yes;"> I am embedding the video played at her memorial. </span>I know my mom would have been
proud.<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">Through the
many days of sadness in the past year, especially the weeks leading up to her
final breaths, I was able to develop a sense of peace.<span style="mso-spacerun: yes;"> </span>Not just with my mom, but with Kendall too.
Dying is inevitable.<span style="mso-spacerun: yes;"> </span>But living, living
happy, that is a choice.<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">I could
focus on the things Kendall still can’t do, or feel sorry for Justin, Kamden,
and myself that Kendall still requires 100% care and we can’t do things normal
families can do.<span style="mso-spacerun: yes;"> </span>But I choose not to
feel that way.<span style="mso-spacerun: yes;"> </span>I choose to celebrate
every breath she takes.<span style="mso-spacerun: yes;"> </span>I choose to
focus on the positive and celebrate the goodness in the people who take time
out of their lives to help and be blessed by Kendall.<span style="mso-spacerun: yes;"> </span>I am grateful for Kendall’s grandad (my dad)
who lost his soul mate of 50 years, but continues to show up each day to get
Kendall off the bus with a smile on his face!<span style="mso-spacerun: yes;">
</span>(he also showed his love and loyalty to my mom by staying by her side
non stop until her very last breath)<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">I know we are blessed.<span style="mso-spacerun: yes;"> </span>Some days it is harder to recognize
that.<span style="mso-spacerun: yes;"> </span>But we are.</span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;"><br /></span></span><br />
<span style="font-size: 14pt; line-height: 107%;"><span style="font-family: Calibri;">So, since I
don’t know how long it will be until my next blog post….for those young
families that may have just received a devastating diagnosis and are
frantically searching the blog-o-sphere for encouragement, please know
this:<span style="mso-spacerun: yes;"> </span>You can do it.<span style="mso-spacerun: yes;"> </span>Just look back to my first post and seven
years later….this girl continues to prove the Dr.’s wrong!</span></span><br />
<br /><br />
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<div style="text-align: center;">
In Loving Memory of Roxie O'Rourke (aka Nonna)</div>
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jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com3tag:blogger.com,1999:blog-3571346434199766550.post-88083160500123330042014-05-20T14:40:00.001-07:002014-05-20T14:40:59.696-07:00Reflections on Kendall’s Kindergarten Year<span style="font-family: Calibri;">“You will look back on therapies, appointments, sleepless
nights, tears, triumphs, milestones, equipment, ignorance, struggle, strength,
and you’ll say with certainty… IT WAS ABSOULTELY WORTH IT!”<span style="mso-spacerun: yes;"> </span>-A Very Special Needs Resource<o:p></o:p></span><br />
<br />
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">So once again, life has taken over.<span style="mso-spacerun: yes;"> </span>Since my last blog post, a lot has
changed.<span style="mso-spacerun: yes;"> </span>I quit my job as a Vision
Teacher in the Dallas ISD. There are a number of reasons why, but the main one
is that I was spread too thin and emotionally drained.<span style="mso-spacerun: yes;"> </span>I don’t regret going back to school in the
years I stayed home with Kendall.<span style="mso-spacerun: yes;"> </span>I
certainly learned a lot that will help support Kendall’s education.<span style="mso-spacerun: yes;"> </span>I will continue to pay it forward and help
other moms navigate the system and advocate for their own children.<span style="mso-spacerun: yes;"> </span>And, as luck would have it, I was able to go
back to work for the company I worked for when Kendall was born.<span style="mso-spacerun: yes;"> </span>(A job I never would have thought about
leaving if Kendall had been a “typically developing” child</span><span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="font-family: Calibri;"> ) So it all worked
out.<span style="mso-spacerun: yes;"> </span>I’m able to get my children up,
dressed, and fed each morning, and see them out the door.<span style="mso-spacerun: yes;"> </span>I also have more flexibility for the plethora
of appointments and school meetings raising Kendall requires.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Calibri;">Kendall<span style="mso-spacerun: yes;"> </span>turned six a
few weeks ago.<span style="mso-spacerun: yes;"> </span>SIX.<span style="mso-spacerun: yes;"> </span>I can’t believe how quickly time goes
by.<span style="mso-spacerun: yes;"> </span>This year of her life was filled
with many firsts, and I attribute that to her great success in school.<span style="mso-spacerun: yes;"> </span>From walking with a gait trainer, moving her
power chair independently for extended periods of time,<span style="mso-spacerun: yes;"> </span>coloring and holding pencils and crayons,
brushing her own teeth and hair, to sleeping in her own bed and being
self-motivated to use her communication device, this year has surpassed my
expectations tremendously.<span style="mso-spacerun: yes;"> </span>A few years
ago, all of these things seemed like pipe dreams.<span style="mso-spacerun: yes;"> Back then, we just</span> tried to get through some of those very
long days without hours of crying fits and rages!<span style="mso-spacerun: yes;"> </span>Kendall still has a number of challenging
behaviors at home, don’t get me wrong, but she is growing up.<o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">This school year couldn’t have gone better.<span style="mso-spacerun: yes;"> </span>We have been so supported at our HOME
CAMPUS!<span style="mso-spacerun: yes;"> </span>Kendall was truly educated side
by side with her non-disabled peers the maximum amount of time possible!<span style="mso-spacerun: yes;"> </span>She only left for Resource classes twice
during the day (and only for 30 minutes)<span style="mso-spacerun: yes;">
</span>She had <span style="mso-spacerun: yes;"> </span>teachers <span style="mso-spacerun: yes;"> </span>that made certain Kendall was included, and
also welcomed her nurses and support staff into the classroom. Our district did
an amazing job ensuring that her IEP was honored and that it was as natural as
possible.<span style="mso-spacerun: yes;"> </span>The level of professionalism
this year by her team and the administrators was remarkable.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">We added a Behavior Specialist to the mix.<span style="mso-spacerun: yes;"> </span>She created a “token economy” behavior system
for Kendall and made a video that gives step by step ways to positively
encourage Kendall to show us what she knows!<span style="mso-spacerun: yes;">
</span>This video is easily passed on to those who work with her. </span><br />
<span style="font-family: Calibri;"><o:p></o:p></span><br />
<span style="font-family: Calibri;">Although IEP time makes me stress a little, this year was
much better than the past.<span style="mso-spacerun: yes;"> </span>I feel like
the Diagnostician, Assistant Principal, teachers, and related services really
listened to my concerns and shared in our family’s vision for Kendall.<span style="mso-spacerun: yes;"> </span>I’m confident this next year of progress
monitoring will be better and make more sense, since we have more of a concrete
plan written in to her IEP. I'm also extremely excited about the focus on literacy in first grade! I have no doubt next year I will be able to say she is a reader!!</span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">We are finally on the right path with the communication
device.<span style="mso-spacerun: yes;"> </span>Her speech pathologist at school
has gone above and beyond to learn the ins and outs of the selected device, and
also is training others how to use it.<span style="mso-spacerun: yes;">
</span>Kendall’s IEP requires her to use it three times in each class.<span style="mso-spacerun: yes;"> </span>I sleep better at night knowing that this is
progress for her and a means to her independence and ending communication
frustrations for her.<span style="mso-spacerun: yes;"> </span>We are going to do
our best to continue that at home throughout the summer.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span><o:p></o:p></span><br />
<span style="font-family: Calibri;">We have faced a lot of decisions regarding Kendall’s health
this year.<span style="mso-spacerun: yes;"> </span>Tonsils and hip surgery are
inevitable, but I’m still in denial about both.<span style="mso-spacerun: yes;">
</span>Kendall’s eyes are finally healing from the 5 surgeries this year…and we
finally will have a three month break from eye exams under anesthesia.<span style="mso-spacerun: yes;"> But</span> despite<span style="mso-spacerun: yes;">
</span>all the absences Kendall had this year, she still did amazing!<o:p></o:p></span><br />
<br />
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<span style="font-family: Calibri;">This life of ours is not always easy.<span style="mso-spacerun: yes;"> </span>I still have my moments of anger and
hostility toward the universe for how hard things can be for Kendall Ann.<span style="mso-spacerun: yes;"> </span>But overall, we seem to be plugging
along!<span style="mso-spacerun: yes;"> </span>There isn’t a day that goes by
where I don’t count my blessings for our loving and supportive family and
friends, our nurses, and school staff.<span style="mso-spacerun: yes;">
</span>Life is a precious gift, and I cherish every day of it!<o:p></o:p></span></div>
<br />
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com10tag:blogger.com,1999:blog-3571346434199766550.post-81495638144594136382013-09-09T08:43:00.000-07:002013-09-09T08:43:43.930-07:00Included in Kindergarten
<br />
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<span style="font-family: Calibri;">“When inclusive education is fully embraced, we abandon the
idea that children have to become ‘normal’ in order to contribute to the
world…We begin to look beyond typical ways of becoming valued members of the
community, and in doing so, begin to realize the achievable goal of providing
all children with an authentic sense of belonging.”<span style="mso-spacerun: yes;"> </span>--Norm Kunc<o:p></o:p></span></div>
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">It seems like ages since my last blog post.<span style="mso-spacerun: yes;"> </span>Life has been such a whirlwind lately.<span style="mso-spacerun: yes;"> </span>My heart has been filled with angst about
this school year for Kendall.<span style="mso-spacerun: yes;"> </span>I know I’m
not alone amongst the other moms of Kindergarteners beginning school this
fall.<span style="mso-spacerun: yes;"> </span>It’s difficult to put your child
in the care of others.<span style="mso-spacerun: yes;"> </span>Of course we have
a trusted group of nurses, teachers, and related services….but the uncertainty
of the unknown makes my head spin.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Like all other moms, I have to find a peace that I’ve raised
my child to the best of my ability, and at some point she has to fly on her
own.<span style="mso-spacerun: yes;"> </span>I have to trust in the good in
people.<span style="mso-spacerun: yes;"> </span>I have to trust that when
someone looks you in the eyes and says something….that’s what they mean and
they’ll follow through.<o:p></o:p></span></div>
<span style="font-family: Calibri;">There has been so much preparation put into starting this
school year out right for my sweet girl.<span style="mso-spacerun: yes;">
</span>Her incredible Vision Teacher (TVI) and Orientation and Mobility
Specialist (O&M) did a presentation for the Kindergarten teachers on
accommodations and modifications over the week before school started.<span style="mso-spacerun: yes;"> </span>They made a sweet power point presentation and slide show
that did a wonderful job introducing her to the team.<span style="mso-spacerun: yes;"> </span>It showed all of the ways that we include
Kendall naturally in our home life, and how loved she is. <o:p></o:p></span><br />
<br />
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<span style="font-family: Calibri;">Within the first week of school, Kendall was invited to a
birthday party.<span style="mso-spacerun: yes;"> </span>A princess tea
party.<span style="mso-spacerun: yes;"> </span>I cried when I received the
invitation.<span style="mso-spacerun: yes;"> </span>This was a friend of
Kendall’s from school.<span style="mso-spacerun: yes;"> </span>Someone she knows
all on her own.<span style="mso-spacerun: yes;"> </span>Sure, the letter we sent
home with suggested answers for students with questions about Kendall’s
wheelchair, insulin pump, and communication device may have spurred the
invitation.<span style="mso-spacerun: yes;"> </span>But the bottom line is she
was invited, included, and enjoyed every minute of it (until the cheering and
happy birthday song!!)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Calibri;">In Sunday school, we can’t walk through the hall without
another five year old stopping to say hi to Kendall.<span style="mso-spacerun: yes;"> </span>The kids from her school are introducing her
to other kids and their parents.<span style="mso-spacerun: yes;"> </span>When I
went to pick her up a few Sundays ago, a little girl asked if Kendall could
come over to play.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
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<span style="font-family: Calibri;">I can’t help but feel hopeful that we are breaking some of
the barriers here.<span style="mso-spacerun: yes;"> </span>Kendall is happy,
excited to go to school each day, and participating in class.<span style="mso-spacerun: yes;"> </span>When I picked her up early for an
appointment, she was coloring and working independently just as the other kids
were.<span style="mso-spacerun: yes;"> </span>Side by side with her peers, she
has made it through two, TWO!! assemblies complete with cheering and microphones
without a melt-down.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Calibri;">Her teacher is the perfect match!<span style="mso-spacerun: yes;"> </span>A little sarcasm mixed with strong teaching
strategies and serious structure makes it work.<span style="mso-spacerun: yes;">
</span>I have no doubt that Kendall gets her humor!<span style="mso-spacerun: yes;"> </span>Kendall respects her teacher, and it is very
natural.<span style="mso-spacerun: yes;"> </span>It’s not like it was in the
past.<span style="mso-spacerun: yes;"> </span>Nobody is babying her.<span style="mso-spacerun: yes;"> </span>Nobody is making the other kids feel like
Kendall needs “help.”<span style="mso-spacerun: yes;"> </span>She’s a student in
that class….not just a visitor dropping in.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span><br />
<br />
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">I have to say I am cautiously optimistic.<span style="mso-spacerun: yes;"> </span>I know this may not work forever.<span style="mso-spacerun: yes;"> </span>I know this may have to change in the
future.<span style="mso-spacerun: yes;"> </span>I know this model isn’t for
everyone…<span style="mso-spacerun: yes;"> </span>But it is for us.<span style="mso-spacerun: yes;"> </span>And it’s working!</span></div>
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jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com5tag:blogger.com,1999:blog-3571346434199766550.post-88594174618840772772013-06-07T12:06:00.002-07:002013-06-07T12:17:40.195-07:00An EPIC inclusion FAIL.<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Imagine the excitement.<span style="mso-spacerun: yes;">
</span>A full year of PPCD/Pre-K.<span style="mso-spacerun: yes;">
</span>Programs, class pictures, kids having fun on the playground, eating lunch
with the curly haired little girl in the power wheelchair with the pink
wheels.<span style="mso-spacerun: yes;"> </span>Everyone interacting despite
their differences…<o:p></o:p></span></div>
<span style="font-family: Calibri;">The end of the year arrives.<span style="mso-spacerun: yes;">
</span>The classroom floods with excited parents and their cameras and video
cameras.<span style="mso-spacerun: yes;"> </span>Dads have taken off work.<span style="mso-spacerun: yes;"> </span>The kids are dressed up in their
costumes.<span style="mso-spacerun: yes;"> </span>The teachers are smiling
through their exhaustion, but ready to show off the dances, songs, and poems
they’ve been working on for months.<span style="mso-spacerun: yes;">
</span>Pictures are snapping right and left.<span style="mso-spacerun: yes;">
</span>The kids are smiling and laughing with one another. They are proud of
their friendships and accomplishments.<span style="mso-spacerun: yes;">
</span>One by one they are called up to the “stage” and recognized for their
strengths.<span style="mso-spacerun: yes;"> </span>They tote end of the year
gifts for the teachers in creative wrappings… <o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">Just imagine.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">That’s all I can do.<o:p></o:p></span></div>
<span style="font-family: Calibri;">I’ve tried to hide the situation.<span style="mso-spacerun: yes;"> </span>I’ve tried not to blow it into an irrational
rant on facebook.<span style="mso-spacerun: yes;"> </span>I’ve tried to act like
it doesn’t bother me and that I’m moving on.<span style="mso-spacerun: yes;">
</span>But if you read this blog, you know that’s not in my nature.<span style="mso-spacerun: yes;"> </span>So if you’ve come here for a
good-feeling-inclusion-works-again-all-is-well-with-the-world type post.<span style="mso-spacerun: yes;"> </span>Don’t read any further.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">Because that’s not what this is.<o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">What this is, is a complete and utter fail.<span style="mso-spacerun: yes;"> </span>True, Kendall made a lot of accomplishments
this year.<span style="mso-spacerun: yes;"> </span>But socially, I don’t feel
like this went well.<span style="mso-spacerun: yes;"> </span>At first I
did.<span style="mso-spacerun: yes;"> </span>I was cautiously optimistic after
Kendall wasn’t involved in the “Pre-K Circus” the first semester.<span style="mso-spacerun: yes;"> </span>I was completely caught off guard and heart
broken after the class picture debacle blogged about earlier.<span style="mso-spacerun: yes;"> </span>But this third strike literally brought me to
my knees.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span><o:p></o:p></span><br />
<span style="font-family: Calibri;">There was a pre-k program and Kendall wasn’t invited to be
in it.<span style="mso-spacerun: yes;"> </span>She wasn’t invited to practice
with them.<span style="mso-spacerun: yes;"> </span>Her IEP has her in the
general ed pre-k program half of the time she’s at school.<span style="mso-spacerun: yes;"> </span>Apparently they practiced and prepared during
the other half.<span style="mso-spacerun: yes;"> (The other half being when she's the only child in the PPCD classroom with three to four adults and no other students) </span>A child even spoke up
and said “I wish Kendall had a partner for the dances”<span style="mso-spacerun: yes;"> </span>but the teacher looked the other way.<span style="mso-spacerun: yes;"> </span>I intercepted the letter about the
program.<span style="mso-spacerun: yes;"> </span>As you can imagine, I came
unglued.<span style="mso-spacerun: yes;"> </span>So, with five days remaining, a
last ditch effort was made to include Kendall.<span style="mso-spacerun: yes;">
</span>You know, taking another student from their able-bodied partner and
pairing them up with Kendall.<span style="mso-spacerun: yes;"> </span>Lots of
backtracking was had by the principal. <span style="mso-spacerun: yes;"> </span>(I imagine it went something like this:<span style="mso-spacerun: yes;"> </span>you WILL find a way to include this child
because her mother is really, really, angry….and has sent a bunch of
e-mails)<span style="mso-spacerun: yes;"> </span>Coordinators and Directors can’t
do anything because this is a campus issue….but trust me, I made them
aware.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
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<span style="font-family: Calibri;">I’m disgusted.<span style="mso-spacerun: yes;"> </span>And
that’s the only way to describe it.<span style="mso-spacerun: yes;"> </span>It
was too little too late. It says a lot about a person if they have to be forced
to do training on inclusion and disability awareness.<span style="mso-spacerun: yes;"> </span>It says a lot about an administrator if they truly
turn a blind eye three times in a row and don’t follow up with the training
they promised would happen<span style="mso-spacerun: yes;"> </span>(remember the
book study….it never happened).<o:p></o:p></span></div>
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<span style="font-family: Calibri;">So, I pulled her.<span style="mso-spacerun: yes;"> </span>I
took her out of school with two weeks remaining.<span style="mso-spacerun: yes;"> </span>For me it was such a punch in the gut.<span style="mso-spacerun: yes;"> </span>We had to invite ourselves.<span style="mso-spacerun: yes;"> </span>I wish I had just let the program happen and
showed up for it with my husband, camera, video camera, and smiles.<span style="mso-spacerun: yes;"> </span>Maybe if they could physically see the damage
and hurt this does to a family they would have changed their approach.<span style="mso-spacerun: yes;"> </span>And they also would have ended up on the
local news.<span style="mso-spacerun: yes;"> </span>Because, like I said….this
is hurtful, unlawful, and down-right wrong.<o:p></o:p></span></div>
<span style="font-family: Calibri;">The principal actually had the nerve to tell me there wasn’t
ever really a “program” in the making.<span style="mso-spacerun: yes;">
</span>Bull shit.<span style="mso-spacerun: yes;"> </span>If you saw the
pictures I saw of the PROGRAM you would realize a lot of thought and preparation
went into this.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span><o:p></o:p></span><br />
<span style="font-family: Calibri;">So, once again.<span style="mso-spacerun: yes;"> </span>Shame
on them.<span style="mso-spacerun: yes;"> </span>Shame on all of them.<span style="mso-spacerun: yes;"> </span>I am so ready to say goodbye to this school
and their “perfect little children.”<span style="mso-spacerun: yes;"> </span>I’m
so sorry that my child doesn’t fit into the box of normal children that you
only include in activities.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">But wait, I’m really not sorry.<span style="mso-spacerun: yes;"> </span>My daughter is exactly who she should
be.<span style="mso-spacerun: yes;"> </span>It may be hard and uncomfortable and
require you to think outside of your box.<span style="mso-spacerun: yes;">
</span>But she is going to be included.<span style="mso-spacerun: yes;">
</span>She is going to be treated exactly like every other student.<span style="mso-spacerun: yes;"> </span>It won’t be easy.<span style="mso-spacerun: yes;"> </span>But we are not going anywhere, so you’d
better figure it out.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com10tag:blogger.com,1999:blog-3571346434199766550.post-81804330454610053682013-03-28T12:35:00.001-07:002013-03-29T11:49:40.027-07:00EXclusion: GenEd Vs. SpEd<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
Many of my close friends know that a few weeks ago I had a terrible slap in the face when it comes to the inclusion of my darling girl. In her IEP it looks great. She has had inclusion time in a general education pre-k (something we really had to sort of fight for because in Texas she is not pre-k eligible....well technically she is for PPCD because she has a disability....but not for low income or foster kids, or military kids...but that's another story). Anyway, I quickly found out that maybe some of the people involved in her education do not share the passion and love for inclusion that we as a family feel.<br />
<br />
Long story short, the Pre-K kids that Kendall spends a large part of her school day with were taking a class picture. The teacher and aid of that class asked if they could take one picture with Kendall and one without Kendall. Mind you, there were other PPCD kids in the picture that were not asked to leave (not in wheelchairs) Of course when I got wind of this I exploded with every emotion possible. I followed that with e-mails and phone calls to people in administration. I had quick replies....but not a lot of follow through. Their solution? A book study on "Out of my mind" a great FICTIONAL story on an inclusion fail. I think the book's great...don't get me wrong. It gives great insight that a child with cerebral palsy or dystonia can still have normal or exceptional cognition. But it is a children's book. I guess I was hoping for a more research-based training. Then I realized maybe they don't know how to do that. <br />
<br />
In favor of giving both sides of the story... the general ed pre-k teacher called me a few days after the event happened. She stated that she did not ask for Kendall to be out of the picture, simply that she wanted her wheelchair out of the picture. Whatever. Like that's any better. And besides, there were way too many people that heard her to back track. She even tried to blame her aide. Again, whatever. <br />
<br />
To further the heart wrenching event, the rest of the girls in the pre-k class did end up taking a picture together without Kendall. Shame on them. Shame on the moms in the room when it happened. Shame on the person who took the picture (the pre-k teacher) Shame on them all. But are they really to blame? <br />
<br />
I also found out that a few weeks before, they did a Pre-K circus. Kendall wasn't invited to be in it. Other PPCD kids were. Kendall was not. Again they excluded her. <br />
<br />
We had Kendall's ARD to determine our plan for next year. During the ARD the pre-k teacher wasn't going to comment when we discussed Kendall's present level of academic functional performance. I leaned over and asked to hear from her. She said...and I quote "Kendall loves being in my room. She has fun while she's there. I love her smile." Ok. Great. My kid has a nice smile and likes being around other kids. That's ALL you have to say about her time in your classroom? Oh, wait. I forgot. She's not really your student. She's a visitor in your room. And this ARD is to discuss the placement of a student in a general education classroom. We could have used a little more. (and by the way, she wasn't even going to come to the ARD.)<br />
<br />
Now, the district can get upset about this and what it does to their reputation, etc. But what are they going to do about it? Who's job is it to train general education teachers? Is it the Special Education Teacher's responsibility? Support staff? Because those are their peers. It really holds more of a punch when it comes from administration. Plain and simple. Not to mention some special education teachers really don't buy in to inclusion either. They almost "like" the idea of being the "special" teachers. Some of them even go so far as to tell parents that it's best for their children to be in a self contained classroom with other kids with disabilities...that they should start there because their kid may get ignored in a general education classroom. This infuriates me to no end. EVERY CHILD SHOULD START IN A LEAST RESTRICTIVE ENVIRONMENT FIRST! If you need to make changes later, so be it. I personally believe in raising expectations (especially for kids who are multiply involved) and supporting them with accommodations and modifications. It's 2013 for God's sake. <br />
<br />
I can go on and on about how hurt this made me. It's the big picture that really hurts my heart. My darling little girl had to hear adults talk about her like she wasn't good enough to be in a damn picture. I'm not sure I'll ever get over that. <br />
<br />
But we are moving forward. Kendall will be in her Gen Ed Kindergarten class next year with her neighborhood kids. She'll receive resource support during "intervention time" which is suppose to be during individual work time. She'll have a full time nurse that will assist her and her personal care needs. She'll have resource teachers taking her for one on one instruction 30 minutes during math and 30 minutes during reading. She'll be with her peers every other minute of the day. It's official.<br />
<br />
Licking my wounds and marching on. jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com12tag:blogger.com,1999:blog-3571346434199766550.post-43466679442774167792013-03-06T06:13:00.000-08:002013-03-06T06:13:31.600-08:00A Least Restrictive Environment...A least restrictive environment requires that each local education agency ensures to the maximum extent appropriate that children with disabilities are educated with children who are not disabled. The Texas Education Agency states that “special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” <br />
<br />
<br />
Kendall’s turning five next month. I can’t believe it. Time flies…and keeps on flying. My thoughts on the above topic have evolved greatly in these last four years. I was a general education teacher for five years right out of college. I never in my life had a “special education” college course or class. In my first few years teaching at a Title One school, my eyes were opened quite a bit. I never had an entire room of children on grade level. In my teaching career, I always had to individualize my lesson plans for my kids. I was taught that was best practice. I never passed out worksheets and gave the same spelling list to my class. I just didn’t. I couldn’t. <br />
<br />
So, I guess what I’m saying is, I don’t understand what the push back is! I never really had any multiply handicapped children in my third grade classroom. I had kids with emotional disabilities, kids with learning disabilities, kids with “dyslexia.” I would like to believe that if I did have a child with multiple disabilities, I would have embraced the challenges to find a learning style and form of evaluation that worked for that child. My job was to educate children. All children. I expect the same from teachers for my own kids now.<br />
<br />
I do understand that teachers are overwhelmed. Often times, they don’t have the support they need to complete all of their tasks. They spend too much time getting kids to pass a test….blah, blah, blah. But the bottom line is: they are teachers. They get paid to be teachers, and if they don’t like the job or the work involved, they need to retire or find a new career path! Period.<br />
<br />
So for me, it’s really a no brainer. Kendall is turning five. The law says she can go to her home school and be educated with her nondisabled peers. So, that’s exactly what is going to happen. I have a meeting scheduled before her ARD at the end of the month. If her present levels of performance lead us to goals that are academic (and by that I mean, in line with the TEKS “Texas Essential Knowledge and Skills” for kindergarteners) there shouldn’t be any problem. Making sure she has goals that don’t set her up for failure is my priority. <br />
<br />
I plan to be pretty specific in her IEP on a variety of things, and I am hopeful our ARD committee will see things my way. <br />
<br />
But we all know that the best laid plans don’t always go the way you expect. There are a lot of things that factor into the success of Kendall’s inclusion. She has to have administrators and teachers in her new school that share our vision for Kendall. I’m not worried about the other kids. Kids embrace Kendall. That’s obvious pretty much everywhere we go. Usually, it’s the adults that hold them back. <br />
<br />
I won’t stand for Kendall being left out, discriminated against, coddled, or blending into the background. I expect her to be treated like every other five year old at school! And as of this moment, my gut tells me this is doable. We’ve come a long way so far, and I just know she will progress leaps and bounds side by side her non-disabled peers! (with in class supplementary aids and services of course).<br />
<br />
jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-64718804768473075822013-01-05T07:16:00.001-08:002013-01-05T07:23:37.960-08:00Surgery and More Surgery<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.flickr.com/photos/jocalynbriggs/8338712198/" style="margin-left: 1em; margin-right: 1em;" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8362/8338712198_f8e42f0d28_q.jpg" width="320" /></a></div>
<a href="http://www.flickr.com/photos/jocalynbriggs/8349963330/" title="Endocrine 12-27-12 by jocalynbriggs, on Flickr"><img alt="Endocrine 12-27-12" height="320" src="http://farm9.staticflickr.com/8468/8349963330_f30c500c69_q.jpg" width="320" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8337658155/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8074/8337658155_131bef4080_q.jpg" width="320" /></a><br />
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Two days after Christmas we visited our Endocrine Clinic. Due to everything else going on in our lives, I was behind on her labs. They ordered another Hemoglobin A1C. I've been dreading this one, so I didn't hesitate tagging it on to Kendall's upcoming surgery.<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8341223986/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8497/8341223986_957c6a9ffe_q.jpg" width="320" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8340162003/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8364/8340162003_26d6abc973_q.jpg" width="320" /></a><br />
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On January 2 Kendall went in for her long awaited Intraocular Lens Implant (IOL) surgery in her left eye. The anestehesiologist was amazing. The best yet. Instead of intubating her completely, she did an LMA (a tube that doesn't go as far in to irritate the esophagus. Kendall tolerated the eye drops (and by tolerating, I mean she only screamed and arched the entire time.) They left her insulin pump in for the 2 hour surgery. (huge shock...since it isn't hospital approved....but I won't go in to that!) She had labs drawn, her lens implanted, an exam done on her right eye, and a new g-button placed. Because her airway wasn't irritated, they didn't have to giver her any steroids. Her sugar was great and we were on our way home 7 hours later. All in all it was an easy day.<br />
<a href="http://www.flickr.com/photos/jocalynbriggs/8341226166/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8361/8341226166_d4bcd71f74_q.jpg" width="320" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8340168749/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="320" src="http://farm9.staticflickr.com/8073/8340168749_140c55efa9_q.jpg" width="320" /></a><br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8349975704/" title="Endocrine 12-27-12 by jocalynbriggs, on Flickr"><img alt="Endocrine 12-27-12" height="320" src="http://farm9.staticflickr.com/8185/8349975704_ed8305a5ee_q.jpg" width="320" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8349979262/" title="Endocrine 12-27-12 by jocalynbriggs, on Flickr"><img alt="Endocrine 12-27-12" height="320" src="http://farm9.staticflickr.com/8193/8349979262_8ab7213535_q.jpg" width="320" /></a> When we got home she was cranky. Her sugars started to rise because of the stress of surgery, she ran small ketones, but we quickly whipped things back in to shape. We thought she would sleep. She didn't. She screamed all night. All night.<br />
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The next morning Kamden and I took Kendall in for her bladder ultrasound before her surgery follow up across town. She's finished her latest antibiotic for her UTI, and we already had this appointment scheduled. (Nothing like hitting your family deductible before the first week in January.) After the ultrasound, we headed down the hall to be worked in with our Urologist. They cathed her...and it just kept coming and coming. She filled two sample cups with urine. Clearly she has been retaining urine. The ultrasound showed the same. Her bladder was distended. There was a lot of debris in it, (likely bacteria) and her kidneys were also dilated. Her HA1C was higher than it's ever been. Not good. Long story short, we made the decision to proceed with the Vesicostomy surgery. <br />
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A year ago, this was my worst nightmare. Sometimes things get put into perspective for you though. UTI's are miserable. Cathing everyday is horrible too. Something has to happen. She deserves to not be in pain.<br />
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I've recently discovered that sometimes well-meaning teachers classify children and their cognitive abilities on whether or not they are potty trained. I've heard things like "well...this child is in junior high, and not even potty trained." Or believing they should work on life skills such as potty training before they have more academic goals...We recently ran into an issue where Kendall wasn't going to be allowed to attend a community activity because she isn't potty trained. (Obviously, I didn't let that go, and she was able to attend...despite the receptionist's attempt to quote "state law"...laughable) My point is, the vesicostomy will make it impossible for Kendall to ever be potty trained. She'll always have on a diaper and she'll always be trickling out urine. I have to be OK with that. And I will. It just may take some time.<br />
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Her surgery is scheduled for January 30, but there is a chance that it may have to be postponed until mid February. We are going to do her right eye and botox at the same time. Killing three birds with one stone. I have a few weeks to let it sink in. <br />
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I do love this little girl!!<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8348920461/" style="margin-left: 1em; margin-right: 1em;" title="Endocrine 12-27-12 by jocalynbriggs, on Flickr"><img alt="Endocrine 12-27-12" height="320" src="http://farm9.staticflickr.com/8192/8348920461_4a0d0e0f04_q.jpg" width="320" /></a></div>
jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com4tag:blogger.com,1999:blog-3571346434199766550.post-41357375904393929452012-12-26T07:14:00.000-08:002012-12-26T07:14:17.616-08:00InstaChristmas!Merry Christmas! As redundant as it may seem, I'm going to share my Instagram pictures here on my blog. Believe it or not, there are a few people in my life that don't follow me on Insagram (AKA...my mother, and my mother and father in law!) My dad's a pretty hip 75 year old. <br />
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So here are a few of our-never-get-old-Christmas-tree-photo-ops over the past month! <br />
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Some of our festivities include: Kamden's winter recital (I'll post more on that later) Kamden's SibShops party at the hospital, and multiple lunches and dinners out where I forced my family to get in front of a tree! <br />
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We are enjoying a day of rest and being warm inside this Christmas Day while a Texas blizzard is happening outside! Our puppy dog Addie (now almost a year old) has been entertaining us as she chases snowflakes! And Cooper dog (almost 14 years old) couldn't be bothered.<br />
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We plan to continue this day of rest in preparation for the craziness of 8 appointments and a surgery for Kendall in the upcoming week...bleh!<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8268813706/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8217/8268813706_9dcd59b9b9_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8267741621/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8198/8267741621_ff8b1b133a_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8268811852/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8065/8268811852_9e5b1b69e8_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8267745795/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8069/8267745795_db985a112f_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8287728979/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8212/8287728979_ba66cb71cc_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8288791520/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8342/8288791520_15fc9d2cea_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8287733861/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" src="http://farm9.staticflickr.com/8360/8287733861_dcce9b601e_q.jpg" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8288802392/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8501/8288802392_a32a74a2bd_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8307117623/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8217/8307117623_23afbf1c36_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8308172792/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8084/8308172792_f1c625af32_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8308175980/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8083/8308175980_caafa2f22a_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8307129647/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" src="http://farm9.staticflickr.com/8224/8307129647_7cf53f30ce_q.jpg" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8307134701/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8361/8307134701_8e22bf61f6_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8307140289/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8493/8307140289_83b5b1ab88_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8307158245/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8071/8307158245_ed0d0a5690_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8309982699/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8221/8309982699_e511fa3495_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8309985651/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8493/8309985651_aeab820f7d_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8309990457/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8499/8309990457_a34ac9a5eb_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8311045906/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8493/8311045906_c6ce776941_q.jpg" width="150" /></a><a href="http://www.flickr.com/photos/jocalynbriggs/8310030023/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="150" src="http://farm9.staticflickr.com/8501/8310030023_fd308942bc_q.jpg" width="150" /></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com0tag:blogger.com,1999:blog-3571346434199766550.post-78433020646295632242012-12-24T08:03:00.000-08:002012-12-24T08:03:40.717-08:00Make A WishAbout a year ago, I looked into Make-A-Wish for Kendall. Actually, I applied, then revoked my application because I really took issue in saying she had a life threatening illness. If you've read my blog for a while, you know I have a really big issue saying Kendall has a Mitochondrial Disease. I kind of buried my head in the sand with it. Anyway, after talking to family members and friends, I decided to apply again. Kendall was granted a wish...<br />
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Kendall's most favorite thing in the whole world is swimming. She feels free in the water, she gets to play with other kids, she gets a work out and it makes her muscles feel better. In Texas we have warm weather from May to October...but when it cools off, it really cools off. We never winterize our pool, but without a heater, it is definitely too cold to swim. So, Kendall's wish was for a hot tub to enjoy swimming when our pool is too cold. <br />
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Our Make-A-Wish team was incredible. They provided and installed the weekend after Thanksgiving (with crazy electrical work too) a beautiful Marquis Spa, pad, and cover. We have the Wish model. It fits five people comfortably. The temperature can be adjusted quickly and easily. It has two fountains and gives Kendall an entertaining light show when it's dark! We have it positioned right off our patio, and it really becoming part of our routine! In the evenings before bed, Kendall squeals when we talk about getting in the water. <br />
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Make-A-Wish also took it to another level! They came up with the idea to also provide us with a lift so we can get Kendall in the water and out as she gets bigger without any trouble. We haven't installed the lift yet, because we've talked about moving the hot tub closer to the pool so the lift can be used for both the pool and the hot tub. <br />
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I have loads of pictures on my desktop computer that I took with my good camera, but my poor desktop is in the shop, so these pictures on my phone are the only ones I have to share.<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8230598850/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="500" src="http://farm9.staticflickr.com/8202/8230598850_d28e9e2181.jpg" width="375" /></a><br />
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<br />Clearly, Kendall loves it. And the rest of the family does too! We can make memories in our backyard together everyday! </div>
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So, a huge thank you to Make-A-Wish for such an amazing gift. We will surely get a lot of use out of it, and are forever grateful.</div>
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jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-834334125245097112012-12-22T06:13:00.002-08:002012-12-22T06:13:42.828-08:00Exhale.It has been a long time since I visited this blog. <br />
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A lot has happened.<br />
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Obviously work and daily responsibilities have taken over my free time to blog. We haven't had a free weekend in two months! Between Justin's travel, Kamden's extra curricular activities, and Kendall's health issues, my days have been packed! I'm not complaining. Things are good. But his morning at 5:15 (my usual time to get up) I walked out into the kitchen, made a cup of coffee, and turned on my computer. I'm elated that I have the next 16 days to relax, read, and enjoy my family. <br />
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I love having this blog to journal our daily happenings. I love reading other blogs too. I remember in our "early diagnosis days" watching blogs taper off when the kids were around four. For me, that's kind of when I stopped trying to find a reason for Kendall's disabilities and changed the way I think about things. Our family is at a point now where we look for ways to incorporate Kendall into the things we like to do, instead of making excuses why we can't do them. And for me, one of those things is work. I love working. I've always loved working. Yes, there is a lot of guilt involved some days when I leave and Kendall is sick, but when I merge onto the freeway, I get to be Jocalyn for the rest of the day instead of just Mom. And that has done wonders for me. <br />
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So, backing up to October....we finally took the plunge and remodeled our bathroom. Kendall weighs almost 40 pounds now. Her tone tends to kick in when I'm lifting her or carrying her. She thinks it's funny to kick her feet and wiggle. I don't think that's funny when she's wet. So we refinanced our house, and used that money to pay for our bathroom! Where there's a will, there's a way. Our Medically Dependent Children's Program money would have covered the bathroom previously, but they have had many, many cuts lately, and we just didn't want to mess with it. <br />
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We knocked out a linen closet to widen the doorway. We got rid of the tub, and added a new shower head with a handheld. To save money, we decided to do the bathroom in waves. We will replace the vanity when Kendall gets a little older. Right now, we help her brush her teeth and wash her hands and enjoy the storage below the sink! Instead of drilling down into our slab, we built the shower up a little bit and made an incline. Her shower seat is also a potty seat, and can easily be rolled back and forth. We are also able to roll her all the way to her room in the seat too, but haven't done that yet. Kendall enjoys having the warm water run on her while she's getting bathed with the handheld! I think it's working out lovely. Here are a few before and afters:<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8296166311/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="500" src="http://farm9.staticflickr.com/8221/8296166311_98177c8bdb.jpg" width="375" /></a><br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/8297177548/" title="Wheelchair accessible bathroom by jocalynbriggs, on Flickr"><img alt="Wheelchair accessible bathroom" height="500" src="http://farm9.staticflickr.com/8492/8297177548_61780e5731.jpg" width="375" /></a><br />
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I'll stop there for now. I plan to update more throughout the break. I have a lot of time to make up! <br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-58135390173387334732012-10-20T17:21:00.001-07:002012-10-20T17:21:09.504-07:00Our SeptemberHas come and gone! (and more than half of October!!)<br />
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I really can't believe how time has been flying by. I realized tonight as I began to recap her latest eye exam, surgery, and botox under anesthesia that I haven't even touched on her power chair!<br />
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I've been busy with my new job. I couldn't be happier with the people I work with, or the kids! I'm in the groove of working and handling things at home, and so far so good! Unfortunately even though I'm not in the same classroom everyday, I do go to 10 schools and have been subjected to all kinds of germs. I feel like I've been sick for two weeks. And I never get sick!<br />
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I think that we (finally) have a set schedule for Kendall's school, and a plan for her advancing with her communication device. It took multiple meetings, e-mails, phone calls, and sleepless nights to get things in line. Sometimes people are resistant to change. I get that. But I'm not giving in. Inclusion and a collaborative approach to her communication is best practice. And I know Mansfield ISD wants that. And I've recently come to find out parents like me are considered "political cases." I'm OK with that also...though I do prefer "advocate" or "involved parent." Bottom line, I'm OK to be in your face when I need to, and I'm not going anywhere. <br />
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Moving on.<br />
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Kendall did get a new power chair the first week or so of school. She rides the bus in it, and is beginning to move it in the hallways and outside on her own. She operates it with a joystick which is completely reasonable for her. I believe it is a matter of will and not ability! My darling children tend to enjoy having things done for them. We haven't taken the steps toward a van conversion yet, but I'm sure it is in our near future. <br />
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This past week, Kendall had eye muscle surgery. She was already going under for a few other things, so we went ahead and had the surgery for the second time. It was a long morning as you can see from the picture of Justin! Surgery waiting rooms are stressful, and when the anesthesiologist comes out to talk to you, it usually isn't a good sign! (her sugars went super high and we had unplugged her insulin pump, but it scared me to death!) Anyway, she's still aphakic (without her biological lenses) and has esotropia, ambliopia, and apparently optic nerve atrophy. Her pressures are down in both eyes, confirming the thought that she isn't developing glaucoma, and the elevated pressures (29 in her right and 21 in her left) are due to a thicker membrane in her corneas. Her left eye is ready for an inocular lens implant and her right eye may or may not be....so before the end of the year, we are going to attempt to put it in her right eye first, and if it goes as planned, we will do the left eye the next week. If it's still not ready, we wait another year. So...she could have implants by January! It's been a long time coming! Her nystagmus has dampened a bit since the muscle surgery...so that's good. She's still crying vampire tears though...<br />
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We also did Botox again. She had great success with it the first time. When it wore off we could really notice her being more tight in her hips and shoulders. Hopefully that combined with the new Theratog suit will improve her sitting even more. She's getting so strong!<br />
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Kendall started her first season of t-ball through the Miracle League. She doesn't love it, but the environment and people we get to interact with weekly is worth it! Kamden and her daddy have been her buddies on the field. She still gets spooked by the cheering and hates sitting still, but she's warming up to it. We have all enjoyed the car ride together and lunch afterward. Its kinda neat to have a weekend thing just for Kendall. We will definitely be playing again.<br />
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We are in the throws of a bathroom remodel. (one of the motivating factors for me to go back to work!) My back can't lift Kendall Briggs in and out of that tub much longer! We are super excited about the transformation. <br />
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I'm sure there's more to cover that I'm forgetting...Maybe I will update again next month! It feels good to get it out :)jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-74881449699388553232012-09-05T07:19:00.000-07:002012-09-05T07:21:04.952-07:00The Big Picture...The school year is off to a great start. Initially, Kendall was on the bus for over an hour to school, and over an hour on the way home. That really worried me with her blood sugars dropping in the afternoon. Even though we have a nurse on the bus with her, they both have to remain seated, so checking sugars and giving emergency apple juice was a challenge. Fortunately, with some help from our Diagnostician and our Endocrinologist writing a quick note, the transportation department went above and beyond to see that Kendall's bus ride was swift. It now takes around 12 minutes for her short yellow bus to get her to and from school. <br />
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As far as the school year goes, it's only week two...but things seem to be going as planned. You see, I have this vision for Kendall. I've mentioned it before. It would be easier if I could shake it, and not fight for it. But I can't. It's hard to explain, but when an idea is laid on my heart, I can't rest until it becomes reality. For real. I dream about it, think about it, and completely obsess over it. I'm not going to apologize for that.<br />
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First and foremost, I want Kendall's health to be taken care of. She's complicated. Unexpected things come out of the blue. There's a lot of i's to dot and t's to cross. Without proper care every hour, the long term effects could be deadly. Spend money on her care now, save money on her care later. Give her the quality of life she deserves.<br />
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Secondly, she's only four, but typically developing four year olds usually have good communication skills. While Kendall is saying more, and expressing herself through obvious gestures and facial expressions, there's still a lot she can't tell me. She can't say if she's sad, mistreated, jealous, frustrated. She can't share how much she actually knows with everyone. So a communication device is not a luxury. It is a necessity. It is not something I will ever waiver on. She needs the training from skilled people. People working with her need training from skilled people. Technology is evolving so much...it is imperative the professionals are also on top of things. I will not apologize for "strongly suggesting" that training take place. Ever. If I have to be a thorn in your side to make certain my child is getting the best...I will. We live in a community and pay taxes in a community that prides themselves on great schools. Not good. Great.<br />
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Thirdly, I want Kendall to enjoy her life. I fully expect her to build true friendships and have love in her life. The main reason I want Kendall in a general education pre-school class is for the socialization. I'm not naive. I know she requires extras. Her academic goals can be met in a general education class, it just may look differently. Her social goals may not be able to always be met in a self contained class. And it's even bigger than that. The kids in general ed who she is playing with on the playground love her. Kids see obvious differences, but with a quick explanation they usually go on with playing. I've witnessed it. It's the adults that hold them back. So the big picture is society's acceptance. The girls and boys playing with Kendall very well may become nurses, doctors, teachers, advocates, law makers, and voters. If they remember Kendall as the sweet girl on the playground, or from school, her future will benefit from that. If they think of people with disabilities as the kids in the classroom down the hall with the door closed, their decisions will reflect that too. Inclusion is a win-win. Oh, and by the way, a least restrictive environment is also the law.<br />
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Trust me, if I could put both my kids in a bubble and protect them from hurt, and the evils in the world.....I would. But my job is to train them to be loving, compassionate, trust-worthy, independent, contributing members of their community. So while it's not always easy, I have to let my baby girl (and boy) fly.<br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-35378660236981762912012-08-20T13:48:00.000-07:002012-08-20T13:48:18.305-07:00Progress!<a href="http://www.flickr.com/photos/jocalynbriggs/7825924924/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="640" src="http://farm9.staticflickr.com/8308/7825924924_52cb78de4f_z.jpg" width="480" /></a>
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Just wanted to give a quick update and share some pictures from our summer. I absolutely cannot believe it is almost over. <br />
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Kamden and I took a quick trip to Sea World last week. My sister had a work trip, so we tagged along. It was good to have a few days to spend with my boy. He's growing up so fast. I wish I could freeze time.<br />
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Both the kids are ready to start school this year. It is very exciting to think Kendall will be attending 5 days a week. She has come so incredibly far this summer. I can't wait to watch those skills continue. She was learning a lot during summer school and really enjoying it. Good things ahead!<br />
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I have also accepted a job with Dallas ISD as a teacher of students who are blind or visually impaired. I'm excited, anxious, and so ready to begin my new career journey. I never thought (after my 8 year break!) that I would ever be back in the school district. And Dallas Independent School District was never even an option! But sometimes things just feel right, and Lord knows I've learned to go with my gut! I'd be lying if I said I wasn't excited to be back on a teacher's schedule too! Their calendar matches up perfectly with my kids'. I could write a novel about my experiences in Early Childhood Intervention this past summer. It wasn't the greatest for me. I didn't realize how emotionally involved I was in that program. The kids, families, and people I worked with were great. But I truly fear for the future of ECI in our area. Enough said. I can't say I wasn't warned...but I tend to go into things with rose colored glasses.<br />
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And my mom. She actually drove herself over to my house today! Hearing her voice as she entered my front door was music to my ears. She looks beautiful. Her scars are healing nicely. She has elected not to do the radiation the Dr.'s suggested. And I can't say that I blame her. She has been through enough. <br />
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I'll leave you with this video clip of Kendall eating independently. I have watched it over and over about a hundred times. Knowing that she can do this is a huge breakthrough for me. It also shows that she is an ornery little four year old and only does things when she wants to!<br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com0tag:blogger.com,1999:blog-3571346434199766550.post-6868004356250015232012-07-24T17:03:00.000-07:002012-07-24T17:03:57.112-07:00A Hot MessPretty much describes my life right now! Lets go down the list, shall we?<br />
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-My mom's cancer is back and she had surgery yesterday with a less than desirable result...<br />
-I had a car accident during work.<br />
-My son has pneumonia.<br />
-I dropped one graduate class and am treading water in the other.<br />
-When I'm at work all I can think about is home.<br />
-When I'm at home all I can think about is work.<br />
-I haven't been to the gym in like a month or more! <br />
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I try to be positive...really I do. Life could/and has been so much worse. This too shall pass. Eventually. But I would really, really like to get out from under this black cloud sometime in the near future.<br />
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Enjoy the random picture montage:<br />
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I need a vacation. And a stiff drink.<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7640398910/" title="Untitled by jocalynbriggs, on Flickr"><img src="http://farm9.staticflickr.com/8424/7640398910_64ca775ca7_z.jpg" width="480" height="640" alt="Untitled"></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-46996307424500626182012-07-11T18:15:00.000-07:002012-07-11T18:15:16.150-07:00Summer School<a href="http://www.flickr.com/photos/jocalynbriggs/7553057208/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="640" src="http://farm9.staticflickr.com/8025/7553057208_a4ed330217_z.jpg" width="480" /></a><br />
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I honestly can't believe I haven't blogged in so long. I feel like I have been in a bit of a twilight zone. In the aftermath of Kendall's seizure drama, I think I've been very consumed with work and not really acknowledging that we almost lost our girl. It was a very. close. call.<br />
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I guess I've been on auto pilot. The days just keep flying by and I'm not doing a lot of over thinking. Honestly, it's been a welcomed distraction. With that said, my emotions vary each day. Today was one of those "over-thinking" days. Should I be working? Am I really doing what I'm called to do? When I think about my kids during the day, I get a lump in my throat. Being a working mom is tough. Being a working mom when your child has a shorter-than-average-life-expectancy creates even more guilt.<br />
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I know Kendall is in amazing hands during the day. I know each day I am making a difference in families who are where we once were. I'm literally getting paid to pay it forward....but in the throws of doing that, am I short changing my own kids? Was it too soon? Ugh.<br />
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Moving on....We received sad news last week that my mom's cancer is back. Her surgery is scheduled for July 23. Just when you think you're out of the woods.....bleh. Please keep her in your prayers. We are praying that it hasn't spread into her bones or lymph nodes, and that the surgery doesn't involve the plan B.<br />
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Kendall Ann started summer school this week. Extended School Year is an ARD committee decision....and for Kendall her loss of self-feeding skills and emerging skills with her communication device qualified her. (The fact that the two of those things are reciprocally responsible for each other is a whole other post!)<br />
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This was her first experience on the bus. Things have gotten better, and thanks to her VI team creating a book about riding the bus, she continues to warm up to the idea. It was reported to me (SINCE I"M WORKING AND CANT BE THERE TO SEE FOR MYSELF) that she's gotten better and shed less tears. <br />
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Enjoy the photos. I promise to post again soon when I'm in less of a funk :)<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7553055354/" title="Untitled by jocalynbriggs, on Flickr"><img alt="Untitled" height="640" src="http://farm9.staticflickr.com/8154/7553055354_f8d83b09bc_z.jpg" width="480" /></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com3tag:blogger.com,1999:blog-3571346434199766550.post-39604868780777738362012-06-17T05:54:00.000-07:002012-06-17T05:54:48.063-07:00My NightmareI'm writing this post from the slowest wireless connection in the history of wireless connections in then pediatric intensive care unit at Cook Children's Hospital.
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On Friday, my worst case scenario with Kendall and seizures happened. Only, it was worse because it happened while I was at work with a dead cell phone battery.
I received a call from my dead cell phone (no idea how it even turned back on to ring) from Kendall's home health nurse. She sounded calm but I could tell it was something serious. In fact, the first words out of her mouth were "Jocalyn....this is an emergency."<br />
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The next thing I remember is her saying Kendall was unresponsive and she was waiting on the ambulance.
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My drive home with a dead cell phone was the worst experience ever. I felt helpless and panicked and ran every terrible scenario in my head. When I arrived at my house the fire truck had pulled away and the ambulance was nowhere to be found. I'm not sure why, but I darted inside to an empty and still house. It was there I broke down screaming, crying, and the rest is a blur. I managed to finally have enough of a charge on my phone to have my blue tooth pick up in my car, and I called 911 to see where I needed to be. The dispatcher wasn't suppose to tell me over the phone where Kendall was in route to, but he did.
I drove to my dad's and he drove us to the hospital. He was just as panicked as I was, but handled the stressful drive under pressure with ease. (but make no mistake, I plan to take the stickers and magnets off my car because I don't want to be identified as that crazy person driving ever again!)<br />
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When we got to the hospital, after I just about screamed at everyone in the ER for not moving fast enough, I was able to set eyes on my baby. It was a familiar scene. Lots of people surrounding her still body. The ER Dr. explaining to me that she may have had a seizure and was having trouble breathing. She was going to need to a breathing tube to give her some help. Her labs were coming back one right after another. They did a chest x-ray and a CT. <br />
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I was relieved to see my husband arrive in one piece. All I had managed to get out to him while he was at work was Kendall was unresponsive and in an ambulance on the way to Cooks. I'm sure his drive in Ft. Worth traffic was one of the longest drives of his life. <br />
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I usually run worst case scenarios in my head. This time it was no different. The thoughts I was having about the outcome were pretty bad. And at that point I didn't even know the whole story.<br />
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As we were still in the ER, I pieced together the story. It became completely evident how lucky we were that Kendall was starting to respond, and breathing on oxygen without a tube. (apparently a bold move on the ER Dr.'s part....but one I'm glad she made) <br />
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At home with our nurse, Kendall had stopped breathing and had no pulse. Our nurse checked her blood sugar, gave her rescue breaths and compressions, and moved at record speed to save her life. I can't say I would have responded that quickly or appropriately if there on my own. So, thank the Lord for our angel Angelika! <br />
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The Pastor from my parent's church was there and prayed over her during some very stressful minutes. He asked what specifically we were hoping for, and my first thing to say was no further brain damage and the seizures to stop. The chaplain in the ER prayed with us too. The nurses and Dr.'s and techs were calm and swift in all their actions. <br />
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We were sent to the ICU...<br />
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Sunday morning....<br />
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After three stressful days and two sleepless nights in the ICU, we *Justin* were able to convince the hospital we could be discharged from the ICU to home instead of any additional time on the floor. Probably not a very common practice, but in Kendall's case, her endocrine issues that had developed because of the stress of it all we were equipped to handle at home. The 24 hour VEEG did not show any seizure activity and from a neurology standpoint, we were in the clear. Also, her CT scan did not show any new damage. Thank God.<br />
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So we are home. Slept in our own bed last night and got some serious rest. I still have a lot swirling around in my head about why this happened. There are three possible thoughts....Mitochondrial Disease (since her CO2 levels were off the charts...but that can happen with seizures too) some sort of sleep apnea, and depending on which Neurologist you talk to, it was just an isolated incident.<br />
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Either way, we are working on a new game plan. It may or may not involve a sleep apnea monitor at home, oxygen, or new meds. Currently, we are just adding L-Carnatine (one of the Mito cocktails) and using Klonnopin in times when she may be sick and more susceptible to seizures. <br />
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We will survive this. PTSD is just now setting in on me! But, surprisingly we feel OK about it all, and very, very, very lucky.<br />
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Thanks for your continued prayers!<br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com6tag:blogger.com,1999:blog-3571346434199766550.post-1373040662562846842012-06-07T17:03:00.000-07:002012-06-07T17:03:07.229-07:00Back to WorkI can't believe I haven't updated my blog in so long. It has been almost a month...and what a month it's been!<br />
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I started back to work last week. It has been a journey. People ask me if it's hard to leave Kendall during the day, and the answer to that is no. There were no tears shed on my side going back to work. We have such a great system with her therapists, and beloved nurse, Angie, that Kendall hasn't missed a beat in her routine. In fact, honestly I can say that when I come home I'm a better mom. I've always said I was a better mom when I'm working, and I believe that still holds true. I'm better with time management, prioritizing, and organization. I am a people person. I enjoy being out in the world. Taking a shower in the morning, and actually putting make-up on has made me feel human again. Staying at home was extremely hard for me...even with help. There's always something to do...closets that need to be cleaned out, baseboards that have accumulated dog hair, loads and loads and LOADS of laundry. And don't get me started on how Pinterest has stressed me out and made me feel completely inadequate! Long story short, going back to work has been an answer to prayer.<br />
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Now, without going into detail about what I'm doing...I will say I have had a bit of an emotional journey with it all. I have a burning desire to advocate for families that are in situations similar to what we found ourselves in during the dark days of diagnosis with Kendall. For me, it's more of a calling than a job. But during the past few weeks in the standard trainings and modules on company policies, I've found myself extremely frustrated with the system...and the training on patient rights and stories about abuse to children and people with disabilities just about set me over the edge! There were many, many tears shed that day. But I think I am getting tougher, and I am certainly learning a TON!<br />
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My dear husband has been out of town on vacation for a week...it was just bad timing...but he comes home tomorrow, so I'm hoping I will gain some sanity again this weekend. <br />
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The kids are enjoying summer with Kamden in a lot of camps, and Kendall doing Yoga in the living room! It was reported to me today she sat unassisted (but with our nurse right next to her on the floor) petting the dog for 45 minutes! That girl has come so far!!! And our OT is working with kineseo tape on her mouth and I watched a video of her wrapping her lips around a straw and sucking. Very exciting!<br />
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My parents, as always, have really stepped up to the plate to help me this week! My mom has made dinner the past four nights, and my dad is here every morning until our nurse arrives and helps out during the day with Kamden. In the afternoon my mom swims with Kendall and reads to her. Truly, it takes a village! But we are sooooo blessed and thankful to have the one we have :)<br />
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I'm happy. My kids are happy. Life is good.<br />
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(and I'll end on that note and save the details about my endeavor to change some of our school district's "policies" for a later post.....never a dull moment!)<br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com0tag:blogger.com,1999:blog-3571346434199766550.post-76728268240346354932012-05-19T05:43:00.000-07:002012-05-19T05:43:57.633-07:00Neuro and Endocrine...Kendall had two appointments at the hospital last week. Wednesday we got caught up with our Epileptologist. He's been with us since the beginning and has always done a great job listening to me, signing off on services and supplies, and making sure Kendall sees the Dr.'s that she needs to see when she needs to see them. I have always liked the way he doesn't beat around the bush. He tells it like it is, and I respect that. (Actually our Neurologist in the Spasticity clinic does the same thing!) I truly think if we didn't start the Ketogenic Diet when we did, our outcome would have been much different. So, we have him to thank for that!<br />
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I'm happy to say the appointment went well. He's not terribly concerned with the startle seizures we see when Kendall wakes up or when she gets scared. He asked us to consider adding Clobazam to our Keppra routine...and I will consider it. He didn't pressure me about getting in for another VEEG, which made me relieved. We now see him every 6 months which also makes me happy!<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7204069674/" title="IMAG0900 by jocalynbriggs, on Flickr"><img alt="IMAG0900" height="640" src="http://farm9.staticflickr.com/8017/7204069674_3c1ec14b98_z.jpg" width="383" /></a><br />
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On Thursday morning bright and early, we spent the morning in the Endocrine clinic. Catching up with our Diabetic Educators, nurses, and dietitians in there is always fun. They all dote on Kendall. They have seen her come a long long way too! Nobody can believe how big she is, and all comment on how amazingly she holds her head up and interacts with them. She has come a long, long, long way since that dreadful week in the ICU. <br />
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Our Endocrinologist crosses all his t's and dots all his i's. He asks about Justin and Kamden, and we talk about her development. He has always been on the Mitochondrial bandwagon, and this time he wanted to make sure I see our ophthalmologist to discuss the different ways Mito, not Diabetes, can affect her vision. Whatever. I got this buddy. And I'm pretty sure our pediatric ophthalmologist does too.<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7204063876/" title="imagejpeg_2_26 by jocalynbriggs, on Flickr"><img alt="imagejpeg_2_26" height="382" src="http://farm9.staticflickr.com/8015/7204063876_f246130110_z.jpg" width="640" /></a><br />
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About two weeks ago, Kendall started having low blood sugars in the mornings. Like super low, 50's and 60's. He is convinced it is the Mito starting to show it's ugly teeth and changing the way her body absorbs her food. Of course, I silently worried about that all day. That evening I went to make some changes to her pump. After I did, I looked down and realized the AM and PM was reversed on it. Totally my fault after changing her last battery (though I do remember getting a letter from Animus about a glitch after daylight savings time.) Anyway, I then realized that instead of her having lows in the late afternoon, she was probably having those lows in the early hours of the morning....I shutter to think how low they dropped without food and while she was sleeping. Close call for sure.<br />
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Anyway, her HA1C is a 7.1...and we go back in another 3 months which is standard for Diabetes.<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7226672326/" title="IMAG0908 by jocalynbriggs, on Flickr"><img alt="IMAG0908" height="640" src="http://farm8.staticflickr.com/7218/7226672326_7a370c99a4_z.jpg" width="383" /></a>
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Our appointments continue to spread out, and that's a good thing. I'm grateful for great Dr.'s and a fun facility. Our specialty clinic moved next door to the new Dodson Center at Cook Children's. So our appointment days are becoming something to look forward to! Kendall loves the Pirate's Cove because her wheelchair fits through it and the wheelchair friendly playground. Mommy loves the handicap parking on the lower floor in the garage, and the Chic Fil A!<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7226670108/" title="IMAG0914 by jocalynbriggs, on Flickr"><img alt="IMAG0914" height="640" src="http://farm6.staticflickr.com/5079/7226670108_9ce5fbbdb3_z.jpg" width="383" /></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com1tag:blogger.com,1999:blog-3571346434199766550.post-89569684960777372682012-05-14T05:23:00.000-07:002012-05-14T05:23:16.003-07:00Choices...Kendall is going through a stubborn phase. This is definitely complicated by her lack of communication. We have the PRC device at home now, but honestly, it isn't to the point were she can use it. We aren't "permitted' to program it until she goes through the motions of demonstrating each skill independently. I get that they don't want her to go too fast too soon, but "they" don't really spend enough time with my daughter to know what she's ready for... And becuase of that, this is what a lot of our day looks like. I originally took this video because I was so proud of her not giving up until she made her choice on her own. She worked so incredibly hard to get this doll out of the drawer. I'm so thankful for the progress she's made. But I do still get pretty pissed off that she has to wait for someone else to guess what she's thinking (and they'd better guess correctly) before she can have her choice. And what if she wanted a choice not in the drawer? Which is also a good possibility. But that's just my guess.<br />
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Can't you just see the wheels turning in her head?<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/WgY-PmIb1TY" width="420"></iframe>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com5tag:blogger.com,1999:blog-3571346434199766550.post-79689498459702755412012-05-12T04:59:00.000-07:002012-05-12T05:03:16.890-07:00Spring Showcase and Talent Show...My Boy.Although this blog tends to focus mostly on Kendall Ann...there is definitely another ray of sunshine in my life. My dear, sweet, eleven year old boy. I'm not going to lie...this 5th grade year has been full of not turning in homework, (even though he's completed it and it's in his back back!) unorganized binders, missing curfew, slamming doors, talking back, and lots of pre-pubescent zoning out! But he is one of the dearest children I have ever met and I wouldn't change a thing about him!
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Last weekend he performed his original song "Being Eleven", written out of eleven year old angst, and he made me very proud. My sister took the video on her phone, so the image isn't the greatest, but the sound is the same :) You may have to pause the blog music at the bottom if it comes on first!<br />
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And then last night, we attended the 5th and 6th grade talent show where he performed "Wagon Wheel" in front of his peers, teachers, and their families. Again, the video isn't great, but I was so proud of his confidence and talent!<br />
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Kendall was in attendance at both events, but her daddy patiently walked her around and got her through her fears. For a child with a vision impairment and multiple disabilities, dark places with lots of sudden sounds and applause can be very frightening. But we continue to try. She always loves to hear her brother play guitar.jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com1tag:blogger.com,1999:blog-3571346434199766550.post-77021754983332783192012-05-10T07:20:00.000-07:002012-05-10T07:20:09.175-07:00Breathe<div style="text-align: center;">
<a href="http://www.flickr.com/photos/jocalynbriggs/7170736100/" title="IMAG0794 by jocalynbriggs, on Flickr"><img alt="IMAG0794" height="640" src="http://farm9.staticflickr.com/8024/7170736100_36d273137b_z.jpg" width="383" /></a> </div>
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I have the word "breathe" above the door to my patio. I often need the reminder...and the past few weeks I've needed it a lot. Where to begin?<br />
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I finished up a pretty tough semester of school. I had to take two trips to Austin and leave my family (and new puppy) in the hands of my husband. He did remarkably well. The house was a disaster, but everyone was alive and happy, so I shouldn't complain. Going out of town twice in the last month really took its toll on me. Just simple things like getting caught up on laundry, and helping Kamden finish up his science fair project seemed to take forever. So, blah, blah, blah...I haven't had any time to blog.<br />
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Kendall's health is at a stand still right now. That's a good thing. We are still in a holding pattern with her bladder and hips. I'm not naive. I know there are some major things on the horizon, and as she gets older the CP monster and whatever metabolic issues she does or doesn't have will affect her in a variety of negative ways. But for now, we are living life day to day and enjoying the moment with her.<br />
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Last week I interviewed for a job. It was something that just sort of came out of nowhere, and I really had peace about it. I found out Monday that I did get the job, so I will be a working woman again in a few weeks. (insert panic here.) In retrospect, I should have agreed to start right away so I wouldn't have three weeks to talk myself out of it. It's not the job, it's the guilt I'm already feeling about leaving Kendall during the day. We still have a few nursing issues to work out for Fridays, but all in all I know she will be in good hands with our beloved nurse who's been with us forever and attends school with her, and my parents who will be filling in the gaps. It won't be easy, but I can do it, and am looking forward to getting out into the world again. My sweet Kamden will have an amazing summer too. With some added income, he will be able to do some camps and activities I otherwise would have to say no to! But everyone in our household's lives will be changing...and responsibilities will be added to all :)<br />
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The weather has been nice here lately. Kendall got a new swing set which will soon include a platform swing and a bigger special needs swing with a pommel. We have been spending a lot of time outside swinging, playing with our dogs, and swimming. (all of Kendall's favorite things!)<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7170720186/" title="IMAG0816 by jocalynbriggs, on Flickr"><img alt="IMAG0816" height="383" src="http://farm8.staticflickr.com/7079/7170720186_45a923b4da_z.jpg" width="640" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/7170740626/" title="IMAG0801 by jocalynbriggs, on Flickr"><img alt="IMAG0801" height="640" src="http://farm6.staticflickr.com/5160/7170740626_8fb7bcf347_z.jpg" width="383" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/7170729306/" title="IMAG0803 by jocalynbriggs, on Flickr"><img alt="IMAG0803" height="640" src="http://farm8.staticflickr.com/7219/7170729306_e563ec3858_z.jpg" width="383" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/7170877306/" title="016 by jocalynbriggs, on Flickr"><img src="http://farm8.staticflickr.com/7211/7170877306_5c5318d3a3_z.jpg" width="640" height="427" alt="016"></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com3tag:blogger.com,1999:blog-3571346434199766550.post-22226209031293294562012-04-30T05:18:00.000-07:002012-04-30T05:18:59.123-07:00Four.On Friday, my baby girl turned four.<br />
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It was quite a week with appointment after appointment. We did Botox two weeks ago, and while Kendall had a massive headache a few days after (resulting in a frantic trip to the emergency room), she is already reaping the benefits!<br />
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We did it under general anesthesia. Because we needed to go so deep into her hips that was necessary. It was a quick and relatively painless morning (for me) and Kendall seemed unfazed. We didn't see any results until about a week later. It was then we went to our scheduled orthopedic appointment to do x-rays and revisit her hip surgery situation. To our delight, we discovered that her hips had gone from 60% subluxed to only 40%. Progress indeed. So, we have bought ourselves a summer of swimming instead of a summer of surgery and casting. I'm thrilled beyond words.<br />
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We had a small family gathering in celebration of her big day. We've decided to hold out and have one big party in a few weeks to celebrate the end of school, beginning of summer, and Kendall's birthday. I'm cutting myself some slack this year. Between my heavy course load and the number of times I've had to go to Austin for school...April came and went in a flash. Everyone in my family caught a nasty virus in the past two weeks, so things have been a bit frazzled around here!<br />
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I was able to snap a few pictures before I had to leave town on Friday. I'm super behind on blogging, and do have quite a bit to share...but it'll have to wait for another day :)<br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/6981953610/" title="092 by jocalynbriggs, on Flickr"><img alt="092" height="427" src="http://farm8.staticflickr.com/7226/6981953610_5b4227b309_z.jpg" width="640" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/7128040929/" title="097 by jocalynbriggs, on Flickr"><img alt="097" height="427" src="http://farm9.staticflickr.com/8159/7128040929_3ebf1c4db9_z.jpg" width="640" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/7128044273/" title="104 by jocalynbriggs, on Flickr"><img alt="104" height="427" src="http://farm8.staticflickr.com/7264/7128044273_fc5b3e0cc8_z.jpg" width="640" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/6981963290/" title="105 by jocalynbriggs, on Flickr"><img alt="105" height="427" src="http://farm9.staticflickr.com/8142/6981963290_ffcc72668f_z.jpg" width="640" /></a>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com3tag:blogger.com,1999:blog-3571346434199766550.post-84286336077899065762012-04-11T14:21:00.000-07:002012-04-11T14:28:24.711-07:00An Amazing IEP Meeting!Kendall's IEP went remarkably well. It was a reminder that there are people in the world working with this population who truly have a passion for it. I have heard so many horror stories along the way. Issues families have had with different districts (and our district) that make your hair stand up straight...but I'm happy to report this ARD was incredible and I attribute it to the amazing group of people who work with Kendall everyday.<br />
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Obviously Kendall's very involved. We have PT, OT, SLP, AT, MT, TVI, O&M, RN, LVN, etc! Basically the entire alphabet. <br />
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For me, it was amazing to watch things go so flawlessly. I attribute it to the great communication skills each of them have. I had her goals before the ARD, the diagnostician always crosses all her t's and dots all her i's! The principal shares the vision for her school that we have for Kendall. It truly was amazing. And an example of how things should go....for everyone....everywhere. <br />
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Some of the highlights include: Kendall will attend summer school this summer and ride the bus. (She has an emergent skill that qualifies her, and a digression too) I decided (yes, I did!) to let her ride the bus. I think she will probably love it, and it will give me a chance to see how things go this summer doing it before we commit to it for next year. This will be a big factor in me going back to work. <br />
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We also discussed a little of Kendall's "learned helplessness." Not a big surprise to me. I'm an enabler! Thankfully her teachers have no problem raising the bar for her independence! And I am going to try to follow suit more at home. It's just really hard. She's still so little...and so stinkin cute! But I certainly don't want to cause her to face more challenges than she already does. <br />
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I read an article the other day that addresses this exact issue. It was about how kids with multiple disabilities develop adaptive and challenging behaviors (hmh...imagine that!) It was focused on a behavior analytic approach to a child's behavior in order to "enable the child to live as independently as possible while being fully included socially in the least restrictive environments that offer ample opportunity for physical, cognitive, emotional, and social growth and enrichment." (Koegel, Koegel, & Dunlap, 1996) Some of the approaches to managing this behavior as referred to in the article...are positive reinforcement, planned ignoring (extinction), negative reinforcement, and punishment. Since this is exactly what we want for Kendall as parents...Justin and I are committed. Game on, Kendall!<br />
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So as we approach Kendall's 4th birthday, I'm happy to say we have seen great strides in her development in a number of areas. She's completed her first year of school,enjoyed every minute of it, and will continue to excel. I'm sure of it!<br />
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Last summer I attended a seminar about inclusion. It was probably the best thing I could have done. In that seminar, I received a bookmark from Texas Project First <a href="http://www.texasprojectfirst.org/">www.texasprojectfirst.org</a> The site is amazing and has a plethora of information for parents. They encourage you to come up with a "vision" for your child. It is something that should be shared with all professionals that come in contact with your child. After reviewing parent examples, I <strike>completely plagiarized</strike> reworded one that really felt like our vision for Kendall. I have since given it to everyone on our team with a super cute picture of Kendall..and I believe they too now share our vision. I will share it with you below:<br />
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<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;">Our Vision for Kendall<o:p></o:p></span></em></span></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-indent: 0.5in;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;">Our family’s vision for Kendall is simple.<span style="mso-spacerun: yes;"> </span>We want her to have the same opportunities as
any other member of our community.<span style="mso-spacerun: yes;"> </span>We
want her to live, love, and achieve whatever dreams she desires.<span style="mso-spacerun: yes;"> </span>We feel very strongly that her school
experiences will play a major role in her accomplishments.<span style="mso-spacerun: yes;"> </span>We hope to form a partnership with all of her
educators in order to make this happen.<o:p></o:p></span></em></span></div>
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</span></em><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;"><span style="mso-tab-count: 1;"> </span>One of the most important things to
us as Kendall’s parents is that Kendall be seen for what she can do and not for
what she cannot do.<span style="mso-spacerun: yes;"> </span>We appreciate the
environment that surrounds Kendall in our Mansfield community.<span style="mso-spacerun: yes;"> </span>We dream of a community where differences are
accepted and attempts are made to educate those who may be fearful or ignorant
concerning the culture of disability.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></em></span></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;"><span style="mso-tab-count: 1;"> </span>We want Kendall to reach her full
potential academically and socially.<span style="mso-spacerun: yes;">
</span>Both areas hold equal importance to us, and to Kendall’s future
success.<span style="mso-spacerun: yes;"> </span>If she is part of a community
where all children are valued and belong, she will know it and will rise to the
occasion.<span style="mso-spacerun: yes;"> </span>We are confident that
environment will exist in Kendall’s lifetime. <o:p></o:p></span></em></span></div>
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</span></em><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;"><span style="mso-tab-count: 1;"> </span>Presently, one of our biggest goals
for her is communication.<span style="mso-spacerun: yes;"> </span>She is a very
bright girl with a lot of emotions and thoughts.<span style="mso-spacerun: yes;"> </span>We hope to assist her in finding her voice,
whatever form that may be.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></em></span></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%;"><em><span style="font-family: inherit;"><span style="mso-tab-count: 1;"> </span>The following values are important
to us as a family:<o:p></o:p></span></em></span></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 72.2pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<em><span style="font-family: inherit;"><span style="line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: inherit; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span></span><span style="font-family: inherit;"><span style="line-height: 115%;">Kendall
is loved and her strengths are celebrated<o:p></o:p></span></span></em></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.2pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<em><span style="font-family: inherit;"><span style="line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="line-height: 115%;">A
school environment exists where diversity is nurtured and celebrated<o:p></o:p></span></span></em></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.2pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<em><span style="font-family: inherit;"><span style="line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="line-height: 115%;">The
use of People First Language is expected and adults model appropriate responses
to questions regarding differences<o:p></o:p></span></span></em></div>
<em><span style="font-family: inherit;">
</span></em><br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.2pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<em><span style="font-family: inherit;"><span style="line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="line-height: 115%;">Kendall is never pulled or segregated for any reason without our consent<o:p></o:p></span></span></em></div>
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<em><span style="font-family: inherit;"><span style="line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="line-height: 115%;">We
are an integral part of the team that supports Kendall in her education</span></span></em><br />
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com2tag:blogger.com,1999:blog-3571346434199766550.post-83336237806254097422012-04-02T12:29:00.000-07:002012-04-02T12:29:44.115-07:00Our New Addition...and Everyday Videos...<br />
Things have not been the same around our house since we lost Chloe. Ironically enough, I was the one who missed her the most. To turn a very long story short, Kendall met a Therapy Dog named Chip with me the day after we put Chloe down. Of course, it made my wheels start spinning. What if we could replace our precious girl with another lab....one like Chip who doesn't shed, and has the temperment and training to assist Kendall in the future? So this past weekend we went out and adopted this cutie patootie. <br />
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<a href="http://www.flickr.com/photos/jocalynbriggs/7039483393/" title="IMAG0659 by jocalynbriggs, on Flickr"><img alt="IMAG0659" height="640" src="http://farm8.staticflickr.com/7194/7039483393_3acaab20eb_z.jpg" width="383" /></a>
<a href="http://www.flickr.com/photos/jocalynbriggs/6893389740/" title="IMAG0673 by jocalynbriggs, on Flickr"><img alt="IMAG0673" height="640" src="http://farm8.staticflickr.com/7278/6893389740_7005c7c8eb_z.jpg" width="383" /></a><br />
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Her name is Addie (Addison Paws Briggs). She is 10 weeks old. She's basically a mutt. Her mom was a poodle, and her daddy a lab, which makes her a first generation Labradoodle. In my humble opinion, she is the smartest puppy that ever lived. She already fetches (and returns it) and signals when she needs to go outside. I'll leave out the most recent puppy behavior...where she tried to take Kendall's glasses off her face and attacked her pony tail :) We plan to do extensive training with this baby girl to ensure she puts her smarts to good use. <br />
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Wish.Me.Luck.<br />
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We've had some very warm days here of late, so have been outside quite a bit. During a bunch of errands the other day, Kendall's sugar dropped pretty quick. I took her back to the car to give her some juice, and she started a new game. This game is now requested after every feed:<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/4tPvocw8Bfk" width="420"></iframe>
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And this video shows how excited Kendall is for the summer and the water to get warm enough <br />
to swim in:<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/56wPEgJpIN0" width="420"></iframe>jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com1tag:blogger.com,1999:blog-3571346434199766550.post-9930457151748337942012-03-19T14:07:00.000-07:002012-03-19T14:07:23.443-07:00Heavy Hearted Decision<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1vYQih32jY3QBDVyKy0TxEfCSaUKjlGM6UQcZozzkmv18nPq8ce9kdxRDlsHfTCaW8CgP06BaZfzrAtXTU7fOGBdEPT4SKY8Rzld5uBAoOL5uaQIXzISM3Qp22Z_tRubkz06cNUo0QSRS/s1600/IMG_1459.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1vYQih32jY3QBDVyKy0TxEfCSaUKjlGM6UQcZozzkmv18nPq8ce9kdxRDlsHfTCaW8CgP06BaZfzrAtXTU7fOGBdEPT4SKY8Rzld5uBAoOL5uaQIXzISM3Qp22Z_tRubkz06cNUo0QSRS/s400/IMG_1459.JPG" width="300" /></a></div>
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<span style="font-family: Calibri;">Most of you know that Chloe Sue and I have had a love/hate
relationship from the very beginning.</span></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>Justin and I had been
dating almost a year when he decided to adopt a pet from the animal
shelter.<span style="mso-spacerun: yes;"> </span>I remember being at one of
Kamden’s baseball games when he was five years old and talking to Justin on the
phone as he drove his new lab home in his truck.<span style="mso-spacerun: yes;"> </span>After only knowing her a few hours, he told
me “I really think I made a mistake.<span style="mso-spacerun: yes;"> </span>I
thought I adopted a lab…but instead, she’s a piranha.”<span style="mso-spacerun: yes;"> </span>And so began her puppy life chewing and
gnawing her way into trouble.</span></div>
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<span style="font-family: Calibri;">The first week Justin owned her; we took her to the park and
discovered her love of the water.<span style="mso-spacerun: yes;"> </span>She
immediately ran through pond after pond, and her long tail streamed a trail of
water as she whipped it from side to side.<span style="mso-spacerun: yes;">
</span>This eventful day ended in her kennel cough turning into pneumonia.<span style="mso-spacerun: yes;"> </span>She was shaking and sick…and had her first
visit to the 24 hour vet clinic which left Justin footing a gigantic bill.<span style="mso-spacerun: yes;"> </span>“It was way too much money to spend on a dog.”<span style="mso-spacerun: yes;"> </span>He claimed. (My husband grew up in the
country…)</span></div>
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<span style="font-family: Calibri;">In her second week of adoption, Justin had to travel out of
town, and being the loving girlfriend that I was…I took her in for a few
days.<span style="mso-spacerun: yes;"> </span>In those few days, she tore apart
Kamden’s trampoline, ate a memory foam mattress, chewed the strap off a very
expensive purse, dug holes in my flower bed, chewed a pair of Maui Jim
sunglasses, and ate a total of 3 pairs of heels.<span style="mso-spacerun: yes;"> </span>I happily returned her to him the second his
plane landed.</span></div>
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<span style="font-family: Calibri;">Soon after that, Justin and I got married, and I read
“Marley and Me” on our honeymoon in hopes of finding a peace with that darn
dog.<span style="mso-spacerun: yes;"> </span>In her first year of life, she
scratched Justin’s cornea, leaving him to miss work (and me cancelling a
business trip) to get to an ophthalmologist appointment and discover a very
painful corneal abrasion that left Justin out of pocket for three days.<span style="mso-spacerun: yes;"> </span>At Kamden’s end of school year party in our
new house, she jumped in the pool off the diving board<span style="mso-spacerun: yes;"> </span>ON TOP of one of Kamden’s friends.<span style="mso-spacerun: yes;"> </span>She left a gigantic scratch down the side of
his face, and left me speechless.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">There isn’t a holiday spent at our house where Chloe hasn’t
eaten something off the table.<span style="mso-spacerun: yes;"> </span>She’s
stolen countless briskets and food off the grill and smoker. She’s caused a
plethora of arguments between Justin and I, and Justin and Kamden…</span></div>
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<span style="font-family: Calibri;">But one thing is for sure…she’s been a loyal and very loving
dog. <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">When Justin’s out of town on business, she sleeps in the
front room on the couch guarding our home.<span style="mso-spacerun: yes;">
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<span style="font-family: Calibri;">She plops down on the couch and tolerates Kendall’s pats
which sometimes get pretty rough.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">She follows me from room to room just to make sure
everything is OK.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">When the boys were outside playing in the pool or yard,
Chloe has provided hours of protection and entertainment.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Once she saved Kamden from drowning in a creek.<span style="mso-spacerun: yes;"> </span>I’m pretty sure I blogged about that.</span></div>
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<span style="font-family: Calibri;">In the early days of Kendall’s diagnosis, it was Chloe who
sat at my feet in the bathroom while I cried on the floor.<span style="mso-spacerun: yes;"> </span>She’d lick my hands and stay by my side. </span></div>
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<span style="font-family: Calibri;">She rode in the back of Justin’s truck and accompanied us on
many ice cream runs, or trips with Justin hunting and to the farm.<span style="mso-spacerun: yes;"> </span>She was her happiest with the wind blowing in
her face.<span style="mso-spacerun: yes;"> </span>Rides in the truck took a
close second to swimming.<span style="mso-spacerun: yes;"> </span>And her eyes
always told all kinds of stories.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">No, there hasn’t been a day go by where I didn’t get on to
her for something or kick her out of the way. But despite all of these annoyances,
expensive mistakes, and near catastrophic accidents, she’s been a good
dog.<span style="mso-spacerun: yes;"> </span>Her mere presence was a constant in
our lives.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Chloe has been losing weight consistently for about four
months now.<span style="mso-spacerun: yes;"> </span>We ran a bunch of tests,
spent a bunch of money on medication, and have been force feeding her pureed
dog food through a syringe since Thursday.<span style="mso-spacerun: yes;">
</span>She’s been spending more and more time on her own outside, and it’s
become very difficult for her to move.<span style="mso-spacerun: yes;">
</span>It may be cancer, it may be a blockage, it may be a fungus, we may never
know.<span style="mso-spacerun: yes;"> </span>But she won’t eat, she can’t
sleep, and the time has come to put her down.</span></div>
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<span style="font-family: Calibri;">So today with very, very heavy hearts, we will say goodbye
to our little piranha.<span style="mso-spacerun: yes;"> </span>Our house and
walks will never be the same…</span></div>
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<span style="font-family: Calibri;">Chloe Sue, you will surely be missed. You will always remain
in our hearts.<span style="mso-spacerun: yes;"> </span>XOXOXO</span></div>
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<br />jocalynhttp://www.blogger.com/profile/07313874191250865765noreply@blogger.com7