tag:blogger.com,1999:blog-23953702425759519132024-03-09T21:46:21.348-05:00I am fearfully and wonderfully madeMy journey being a mother of a special needs childJenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.comBlogger898125tag:blogger.com,1999:blog-2395370242575951913.post-28343075380995774412019-06-24T17:58:00.000-04:002019-06-24T19:03:39.683-04:00Current Trauma Stress Disorder<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
I have read, and read, articles about
Post Traumatic Stress Disorder (PTSD) in parents/caregivers of medically
complex children.</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
I have never liked identifying with
PTSD, for many reasons. One being the “post” part of it.</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Truth be told, there is no real post
trauma; there is a post, current and pre of trauma, all coexisting in our daily
life.</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivFvyEERgr0ZR-ngL048okiTVIvqwsA_vKJQHqD0ZJA_vdQ1Oh95WiZ9QNCP57APzMj5BC8yfp7uy888dcoW1JtWufuEdIC2-2plwsnXhP6RrXARsvneR9DqPYN6Vn1xYKi0sd-qO3p6A/s1600/IMG_1788.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1440" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivFvyEERgr0ZR-ngL048okiTVIvqwsA_vKJQHqD0ZJA_vdQ1Oh95WiZ9QNCP57APzMj5BC8yfp7uy888dcoW1JtWufuEdIC2-2plwsnXhP6RrXARsvneR9DqPYN6Vn1xYKi0sd-qO3p6A/s320/IMG_1788.jpg" width="240" /></a></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
I tend to not be very forthcoming with
how difficult things have been for 12 years with Brayden. For one, I do not
want pity or to make others uncomfortable when we talk about Brayden. I also
have no need or desire to dwell on the bad because we still have him with us;
we have things do today; we have two other children to keep us going with “normal”
activities; we have jobs to do; and we still like to and want to have fun (which
is why Jeremy and I learned to find humor in just about anything).</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
But the trauma that has happened…</div>
<ul>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
First the non-diagnosis, then an
overload of brain malformation information uncovered, but never any diagnosis. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Putting your baby through more tests,
scans and blood work, than I can even remember.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Being told your child, will not be
able to do much of anything. No walking, no talking, not even able to see.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Seizures, years and years of seizures.
Seizures started as a newborn. Seizures that could last 9+ hours, breathing
trouble, clusters, heavy medications that can cause more breathing troubles,
ER, transports from local hospital to major hospital.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Not being able to eat.<span style="mso-spacerun: yes;"> </span>The trauma of having a child who cannot drink
or eat on their own. The frantic state of trying and trying, and finally
surrendering to the surgery for a feeding tube. Multiple attempts with feeding
tube, to a G-J tube and then to a g-tube and a j-tube.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The feeding tube pops out, the first
few times this comes out…holy moly panic. There is a giant hole in his body. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Vomiting the uncontrollable
vomiting/retching. Bloody vomit, vomit all over him, his bed, the car.<span style="mso-spacerun: yes;"> </span>Sometimes bloody, sometimes burning his skin
so badly that we had to use burn cream. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Having an ileostomy. He cannot even poop on his own. He poops in to a
bag. Part of his small intestine is outside his body. (and for a little humor,
the smell of that poop is trauma) </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Broken bones, busted tubes,
infections, etc. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Emergency room visits. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The procedures or surgeries, oh the
surgeries. Nothing simple or easy.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The recovery from surgeries, often harder on him than the actual surgery.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Jeremy calling me from the hospital to
come quickly, since Brayden was not doing well. Or me calling Jeremy to tell
him the same.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Hospital stays, need I say more. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Having to make major medical/life
changing decisions, over and over. Or the decision to not do anything. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Seeing your child hooked up to more
things than you even knew could be possible. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Machines to keep your child going and
then brought into our home. Suction, oxygen, pulse ox, feeding pump, Bipap,
etc. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Seeing your child in pain or
unresponsive.<span style="mso-spacerun: yes;"> </span>That is torture. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Children dying. Friends that you have walked this medically complex journey with, losing their child.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Having a hospice team show up in hospital
room, when you did not request. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Having those first hospice meetings
and paperwork. Deciding how you want to your child to die, if/when you have to make
those decisions. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Talking to our other boys about Brayden's health and the seriousness of it.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Being unable to help your child.
TORTURE.</div>
</li>
</ul>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
And this is just the list off of the top of my head.</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Then the trauma in even the little day
to day things.</div>
<ul>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
DNR sign in your child’s room. A daily
reminder. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Fighting with insurance companies.
This exhausting. I have screamed and cried over insurance phone calls too many
times.<span style="mso-spacerun: yes;"> </span>And it is only getting harder
every year. How do I prove my child is worth it?! </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Actually having a conversation with
our insurance company, they basically ask how close Brayden was to dying…I snap
and tell them to never ask that question because they were in the process of
approving his services. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Fighting for medication or
equipment.<span style="mso-spacerun: yes;"> </span>I cannot even begin to
explain the insane process and battle that happens with our primary insurance
and then to his secondary insurance. It is frustrating and the process seems to
constantly change. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The feeding pump beeps, then beeps and
then beeps again. Troubleshooting that thing. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Getting the mail. I get anxiety even
just getting the mail. Bills that insurance messed up, denial of services, more
paperwork, etc. I make a pile and try to deal with it all once a month.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The paperwork and meetings. We have
paperwork and meetings for: waiver, county, agency, nursing agency, hospice,
insurance, secondary insurance, school, IEPs, etc. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Daily hospice phone calls.<span style="mso-spacerun: yes;"> </span>The calls itself are brief and easy.<span style="mso-spacerun: yes;"> </span>But we get hospice phone calls every day. And
home visits, for over a year now.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Finding help for Brayden. We live in
fear of losing a nurse, finding a nurse, losing respite, finding respite. </div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Trusting someone to be in our home, take
care of our child AND all of his complex medical needs.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Trying to even leave the house with
Brayden.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Making sure home or leaving home is accessible
for wheelchair and his needs.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Going on vacation…ha, that is a special
kind of stress.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Not knowing what I will find each
morning. I cannot explain where my head is, each and every morning. Will I walk
in to find him in a seizure, covered in vomit, not breathing, tubing wrapped
up, things leaking, unresponsive, temperature is 90 degrees?? I have seen
it all.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The basics of me even taking a shower.
Someone else needs to be home. Or Brayden must have on his BiPap when I hop
into the shower. When he was little, I would bring a bouncy seat in to the
bathroom. I am paranoid.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Brayden going to school. All the work to make that happen. The first few years, I followed the bus many times. I sat at a nearby coffee shop, just to be close to the school.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
The green bag that goes everywhere
Brayden goes. The medical bag has all of the “just in case” items. Seizure rescue
med, ambu bag, extra tubes, etc. Also carrying around an oxygen tank, where he
goes. Because we have had to use those items.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
A daily, constant demise of Brayden’s
health. A very slow demise with each year that passes.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Our family is constantly split. One of us with Brayden, the others out or Brayden at home with nurse. There are very few things we have done all together.</div>
</li>
<li><div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .25in; margin-right: 0in; margin-top: 0in;">
Living in a constant state of waiting
for the other shoe to drop. Because it does drop. All. The. Time.</div>
</li>
</ul>
<div>
<br /></div>
<div>
Here's the thing, we have been doing this for so long, we almost don't know what is would be like to not have this level of constant stress. It is in our face, every moment of the day and night. But we still have Brayden. Today is he content and comfortable. We have Carter and Luke to keep us busy with other things. Jeremy and I have each other. And most importantly, we have our faith.</div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com15tag:blogger.com,1999:blog-2395370242575951913.post-51495599687768408572019-04-14T12:09:00.001-04:002019-04-14T12:09:21.458-04:00Back to BloggingBrayden is still around. Still struggling with his health but doing ok.<br />
<br />
I have not been blogging for over a year. Partly because I have not had the emotional capacity to do so. But mostly because I have been locked out and unable to recover it.<br />
<br />
Finally logged back in this morning and hopefully will be back to blogging soon!Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com3tag:blogger.com,1999:blog-2395370242575951913.post-26417679459050583072018-03-21T12:24:00.002-04:002018-03-21T12:24:50.633-04:00Brayden resting at home<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Arial, Helvetica, sans-serif; font-size: 13.33px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Brayden loves to be home. </div>
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He is still adjusting his days and nights. Angry-sleepy around 5:00 p.m. and awake around 3:30 a.m.</div>
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He is doing better controlling his own body temp without much assistance.</div>
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He still looks yellow. This is probably a result of his high bilirubin.</div>
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When Brayden was discharged his labs looked slightly better. His bilirubin was still high (actually got higher while in the ICU). His other liver numbers did get better (but Brayden's liver numbers have not been good for years due to all of the meds his has been on).</div>
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Actually most of his labs from the CBC to Chem 7 and more, are all off but his time in the ICU helped...leaving the hospital with almost all numbers trending in the right direction.</div>
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Honestly, we just do not know if some unknown virus is just running its course or this is the new state of things for his body.</div>
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<br /></div>
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 13.33px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">But overall Brayden seems more comfortable and less "sick" behavior.</span></div>
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 13.33px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></span>Brayden will be visiting his GI doctor next week, as well as having some repeat labs.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Arial, Helvetica, sans-serif; font-size: 13.33px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Arial, Helvetica, sans-serif; font-size: 13.33px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
His neurologist, GI doctor and pediatrician have been in constant contact. We started with the Palliative Care (PANDA) Program. Through this program, additional nursing is sent to the home and any additional support we would need. </div>
<br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com2tag:blogger.com,1999:blog-2395370242575951913.post-30695017025406783412018-03-14T21:07:00.002-04:002018-03-14T21:10:25.317-04:00Brayden in ICU<span style="font-family: "calibri";">Brayden is
in the PICU at Children’s National. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2iWZiHthLPJiRVA3ydjepIf1AyVgoHgb1t7e_7-m3GIH9vvXqON2J_aAxBtlyLoXIHYWQVCTLyEqm02NIQIXlMkXlZtg7II2JIk42JO958MP3Bm1lFNKRLt9WJeMiPQpmhbO9FCzI1yc/s1600/Bhand.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1541" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2iWZiHthLPJiRVA3ydjepIf1AyVgoHgb1t7e_7-m3GIH9vvXqON2J_aAxBtlyLoXIHYWQVCTLyEqm02NIQIXlMkXlZtg7II2JIk42JO958MP3Bm1lFNKRLt9WJeMiPQpmhbO9FCzI1yc/s320/Bhand.jpg" width="308" /></a></span></div>
<br />
<div style="margin: 0px;">
<span style="font-family: "calibri";">Currently
treating him as hypothermic and sepsis. </span><span style="font-family: "calibri";">Struggling
with his body temperature, he has been around 90 degrees in the last 24 hours. </span><span style="font-family: "calibri";">He has been
incredibly lethargic, scary lethargic.</span><br />
<br />
<span style="font-family: "calibri";">It all seem
to start last week. <span style="margin: 0px;"> </span>Brayden started
retching (very violent retching). But it was not happening consistently…until
last Wednesday morning. The retching was out of control and bloody. Brayden’s
body temperature was very low.</span><br />
<br />
<span style="font-family: "calibri";">We headed to
his pediatrician (who has been in contact with Brayden’s specialists at
Children’s).<span style="margin: 0px;"> </span>Brayden’s temp was reading
around 90 degrees.<span style="margin: 0px;"> </span>We did lots of things
to warm him.<span style="margin: 0px;"> </span>And needed blood work, which
was an impossible task but they finally got it.<span style="margin: 0px;">
</span>Brayden also had a chest x-ray, while there he proceeded to retch and retch
lots of brown, old, blood.</span><br />
<br />
<span style="font-family: "calibri";">Nothing
significant came from the blood work.</span><br />
<br />
<span style="font-family: "calibri";">We headed
home and put Brayden on a bit of a gut rest.<span style="margin: 0px;"> Also needed to </span>deal with the increase of seizures, most likely from his GI and
temperature troubles. No food via j-tube. Only Pedialyte and water.<span style="margin: 0px;"> </span>Then over the next few days we worked back to
his normal food, at a slower rate.</span><br />
<br />
<span style="font-family: "calibri";">He had been
acting a bit under the weather over the weekend but nothing to terrible.</span><br />
<br />
<span style="font-family: "calibri";">Then the
last couple of days Brayden seem to go in to hibernation. Really low body temp,
deep asleep (almost unresponsive). And looking yellow.</span><br />
<br />
<span style="font-family: calibri;">W<span style="font-family: calibri;">e could not
get his temperature up.<span style="margin: 0px;"> </span>So we headed to
the Children's ER this morning.</span></span><br />
<br />
<span style="font-family: "calibri";">The ER
doctors looked for obvious signs of infection but nothing found quite yet.<span style="margin: 0px;"> </span>And made every attempt to warm him.
Lots and lots of fluids (given hot through his IV).<span style="margin: 0px;"> Again, lots and lots of fluids via IV. </span>A warming blanket and light. Not much
increase in his temp.<span style="margin: 0px;"> </span>He has been around
91 degrees all day. Did an ultrasound of his gall bladder and liver. Chest x-ray was done as well.</span><br />
<br />
<span style="font-family: calibri;">B<span style="font-family: calibri;">rayden’s
neurologist, and team, stopped by the ER.<span style="margin: 0px;"> </span>As
well as Brayden’s GI doctor.<span style="margin: 0px;"> </span>Always so
grateful to see their familiar faces and have them talk with the ER doctors.</span></span><br />
<span style="font-family: "calibri";">All seemed
to agree we needed to find a reason for his troubles.</span><br />
<br />
<span style="font-family: "calibri";">Brayden was
moved to the PICU last this afternoon. Working on his temperature, more labs
and ultrasound or CT of his abdomen. </span><br />
<br />
<span style="font-family: "calibri";">As of this
evening, Brayden has perked up a bit.<span style="margin: 0px;">
</span>Temp increasing as well. Small steps in the right direction.</span><br />
<br />
<span style="font-family: "calibri";">We know his
body is tired and we do not know how much more his body can handle.<span style="margin: 0px;"> </span>Pray that we find that best mode of treatment
and plan moving forward.</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com5tag:blogger.com,1999:blog-2395370242575951913.post-70202009992769865262018-02-16T10:45:00.000-05:002018-02-16T13:48:32.539-05:00Insurance has all the POWER<span style="font-family: "calibri";">Insurance has been compromising the health of Brayden.<span style="margin: 0px;"> </span></span><br />
<span style="font-family: "calibri";"><br /></span>
<span style="font-family: "calibri";">Brayden’s secondary insurance went through a major over haul
(throughout VA).<span style="margin: 0px;"> </span>I attended meetings,
phone calls, talked with other parents and reviewed all paperwork.<span style="margin: 0px;"> </span>I made the best, educated, decision that I
could make.<span style="margin: 0px;"> </span>The transition to the new
secondary insurance has not been a smooth one.</span><br />
<br />
<span style="font-family: "calibri";">Our primary insurance changed.<span style="margin: 0px;"> </span>Jeremy started his own business two and half
years ago.<span style="margin: 0px;"> </span>We needed to sign up for
individual/family plan.<span style="margin: 0px;"> </span>The ONLY plans
available to us were those on Obamacare/ACA/healthcare.gov.<span style="margin: 0px;"> </span>Brayden’s existence/life is considered a
PRE-EXISTING condition.<span style="margin: 0px;"> </span>We are not
eligible for most health insurance plans because of Brayden.<span style="margin: 0px;">
</span>The ONLY good thing to come out the ACA was being eligible for health
insurance regardless of a pre-existing condition.</span><br />
<br />
<span style="font-family: "calibri";">Getting a little political here… The ACA was good in
theory.<span style="margin: 0px;"> </span>But there was no plan to pay for
it.<span style="margin: 0px;"> </span>Thus insurance companies, hospitals,
doctors, etc. were not paid enough, in a timely manner, etc.<span style="margin: 0px;"> </span>The result – many insurance companies, hospitals,
doctors have dropped, no longer participate in ACA programs.<span style="margin: 0px;"> </span>Starting in 2018 only two insurance plans
were available to our family (again because Brayden is a pre-existing
condition).<span style="margin: 0px;"> </span>Cigna Connect and Kaiser.<span style="margin: 0px;"> </span>Neither one great choices for anyone with
chronic health troubles.<span style="margin: 0px;"> <span style="font-size: xx-small;"> </span></span><span style="font-size: xx-small;">A side-note:
any prior administration, as well as the current administration, have no great
plan for healthcare.</span> </span><br />
<br />
<span style="font-family: "calibri";">Now imagine changing, arranging all of Brayden’s doctors,
medications and medical supplies.<span style="margin: 0px;"> </span>That
is around 100 items (I know because I have been on the phone with the insurance
companies going over it all).<span style="margin: 0px;"> Below is a list of some of his DME supplies.</span></span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH4aiadLMvJWJNqJfKufBbnFz9D1n_FNuGNLzrDu9mafy8TR90ua_kw41mHaIUP5qIepeFIA5S60pq5Ai1M0UNwBW6Ge96vqbYpy4IAFAyFN4nr6AO0AsHxe1ZfdGW7K-al0QPXQKMmCI/s1600/Binsurance_LI+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="930" data-original-width="1600" height="372" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH4aiadLMvJWJNqJfKufBbnFz9D1n_FNuGNLzrDu9mafy8TR90ua_kw41mHaIUP5qIepeFIA5S60pq5Ai1M0UNwBW6Ge96vqbYpy4IAFAyFN4nr6AO0AsHxe1ZfdGW7K-al0QPXQKMmCI/s640/Binsurance_LI+%25282%2529.jpg" width="640" /></a></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<span style="font-family: "calibri";">Just in the last 24 hours, I have spent approx. 7 hours on
the phone. </span><br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nAr0bDeMaJDstd2YDYRMNwibb2Ohsq7kFTX4KWapt5m_UiOsSOF28k8QVfCg5TulZO-RbeBmKEot8b_2KRX-xZZeYm_c909hkW_37HRn7qaRZTXG83jXqxYc_seA_TYRNmasP87mOz8/s1600/Binsurance2.png" imageanchor="1" style="-webkit-text-stroke-width: 0px; background-color: transparent; clear: right; color: #0066cc; float: right; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 16px; margin-left: 16px; orphans: 2; text-align: left; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nAr0bDeMaJDstd2YDYRMNwibb2Ohsq7kFTX4KWapt5m_UiOsSOF28k8QVfCg5TulZO-RbeBmKEot8b_2KRX-xZZeYm_c909hkW_37HRn7qaRZTXG83jXqxYc_seA_TYRNmasP87mOz8/s1600/Binsurance2.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a></span></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nAr0bDeMaJDstd2YDYRMNwibb2Ohsq7kFTX4KWapt5m_UiOsSOF28k8QVfCg5TulZO-RbeBmKEot8b_2KRX-xZZeYm_c909hkW_37HRn7qaRZTXG83jXqxYc_seA_TYRNmasP87mOz8/s1600/Binsurance2.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1334" data-original-width="750" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nAr0bDeMaJDstd2YDYRMNwibb2Ohsq7kFTX4KWapt5m_UiOsSOF28k8QVfCg5TulZO-RbeBmKEot8b_2KRX-xZZeYm_c909hkW_37HRn7qaRZTXG83jXqxYc_seA_TYRNmasP87mOz8/s200/Binsurance2.png" width="111" /></a><br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Our new primary insurance denies just about everything and
asks for approval, review and/or prior authorization.<span style="margin: 0px;"> </span>We have needed to find a company that would
provide all of Brayden’s medical equipment:<span style="margin: 0px;">
</span>Feeding tube supplies and Nutrition, Ostomy, Oxygen, and Suction.<span style="margin: 0px;"> </span>This should have been happening the beginning
of the year.<span style="margin: 0px;"> </span>It is now February 16 and
the company that our insurance company assigned to us has not delivered one
thing.<span style="margin: 0px;"> </span>If one thing on the list is something
they question, the entire thing seems been held up, without much explanation or
reason.</span><br />
<br />
<span style="font-family: "calibri";">Brayden food is Elecare Jr.<span style="margin: 0px;">
</span>A powder (like you would make baby formula).<span style="margin: 0px;"> </span>Not available at the stores. <span style="margin: 0px;"> </span>The formula has been on hold with the
insurance company.<span style="margin: 0px;"> </span>Every time I call, I
get a different answer as to why.<span style="margin: 0px;"> </span>He has
been on this formula for many years.<span style="margin: 0px;">
</span>Lots of documentation and prescriptions supporting that he needs Elecare
Jr.<span style="margin: 0px;"> </span>Brayden only gets food via j-tube and
there are few options that can work for feedings in to a j-tube (tube in to his
small intestine).<span style="margin: 0px;"> </span></span><br />
<br />
<span style="font-family: "calibri";"><span style="margin: 0px;">Brayden's ostomy supplies have been a mystery. The insurance company assigned us to the equipment company. Doctor sent over scripts for it all. We wait and hear nothing. I talk to who knows how many people. And just yesterday I speak to a supervisor who told me they do not even have ostomy supplies and we need to find another company. Um, this info would have been helpful weeks ago.</span></span><br />
<br />
<span style="font-family: "calibri";">As for all the other supplies.<span style="margin: 0px;"> Last night, w</span>e actually got a phone call from the equipment
company after 9:00 p.m. saying they were not able to deliver Brayden’s oxygen
supplies tomorrow.<span style="margin: 0px;"> </span>I asked when they
would…they had no idea. <span style="background-color: transparent; color: black; display: inline; float: none; font-family: "calibri"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">As I have been typing this, I received an automated call (from an Ohio number) that a delivery will be coming today. It did not say from where or for what...but something should be coming today.</span></span><br />
<br />
<span style="font-family: "calibri";"><u>Some person sitting at a computer, as ALL the power over
Brayden’s medical care. </u></span><br />
<br />
<span style="font-family: "calibri";">The medical equipment company is a broken system all on its
own.<span style="margin: 0px;"> </span>Apria’s call center has no patient
care.<span style="margin: 0px;"> </span>They sure can transfer you and put
you on hold and give you some BS answers as to why your son is not receiving
supplies the he needs to LIVE.</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbGbgZYqaYv7tS29Pbvbj8iaahhHv3_cdv21n26R-9XRsbeUYL0sk3f5lq9UhiLun4FzespCcd05NEufOAoAIVf_NfKV5DymJ1IAVKeXXJEfioVO0-_sc-InYqnKplXfwIVOd6sccQNmU/s1600/Binsurance3.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1104" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbGbgZYqaYv7tS29Pbvbj8iaahhHv3_cdv21n26R-9XRsbeUYL0sk3f5lq9UhiLun4FzespCcd05NEufOAoAIVf_NfKV5DymJ1IAVKeXXJEfioVO0-_sc-InYqnKplXfwIVOd6sccQNmU/s320/Binsurance3.jpg" width="220" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Part of his tube, clogged with beads</td></tr>
</tbody></table>
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">And now Brayden’s secondary insurance.<span style="margin: 0px;"> </span>Denying mediations and some supplies.<span style="margin: 0px;"> </span>One medication we have been fighting for 3
months.<span style="margin: 0px;"> </span>They do not like anything the
doctor's office has been sending to them.<span style="margin: 0px;">
</span>It is not enough for approval.<span style="margin: 0px;">
</span>The solution for was Brayden to try the over the counter
medication.<span style="margin: 0px;"> </span>Which has been a disaster.<span style="margin: 0px;"> </span>Again, Brayden gets things through a feeding
tube, has no motility in his stomach and needs a very tiny bit of concentrated medication (since he cannot handle much).<span style="margin: 0px;"> </span>The OTC med breaks down into small
beads.<span style="margin: 0px;"> </span>These beads clog everything.<span style="margin: 0px;"> </span>And causing problems that should not even
exist for Brayden.<span style="margin: 0px;"> </span>We are still fighting
with them about approval.<span style="margin: 0px;"> </span>Brayden’s case
manager (for this secondary insurance) has been fighting for Brayden to get the
proper med.<span style="margin: 0px;"> </span>Brayden’s pediatrician has
spent too much time on the phone and with paperwork, fighting for him to get
it.<span style="margin: 0px;"> </span>And Brayden’s nursing company has
been advocating for it too.<span style="margin: 0px;"> </span>And still…some
one sitting at a computer can over power all of them with insurance codes and
approvals/denials.</span><br />
<br />
<span style="font-family: "calibri";">Another medication, that we previously were able to fill
last month, is now being denied by his secondary insurance.<span style="margin: 0px;"> </span>Their response to Brayden’s doctor??<span style="margin: 0px;"> </span>“Has Brayden tried other alternatives to this
medication?”<span style="margin: 0px;"> </span>Um, why would he try
different ones if this has been working (for 8 yrs., by the way)?<span style="margin: 0px;"> </span>It is a common medication, used by many.<span style="margin: 0px;"> </span>This morning the insurance company told me
that he needs to try the dissolvable tablet (as opposed to the liquid).<span style="margin: 0px;"> </span>Again, Brayden’s gets this med into his
j-tube. We are not “trying” other alternatives.</span><br />
<br />
<span style="font-family: "calibri";"><u>The insurance companies are literally compromising Brayden’s
health and life.</u></span><br />
<br />
<span style="font-family: "calibri";">As we fight through all of this we have been paying for some
things out-of-pocket (for some things that have been covered for 10 yrs).<span style="margin: 0px;"> </span>And we have been given supplies from other
families (who have reached into their back up supplies to help us out) and used most of our back up supplies.</span><br />
<br />
<span style="font-family: "calibri";">Nov 2017, all of Brayden’s needs were being met.<span style="margin: 0px;"> </span>No troubles with insurance.<span style="margin: 0px;"> </span>Things he needed were always ready, keeping
him healthy and alive.</span><br />
<br />
<span style="font-family: "calibri";">Starting in December 2017, every week has brought new
challenges with insurance.<span style="margin: 0px;"> </span>I have cursed
more in the last few weeks than I have in my life (and I am not one who
curses on the regular so my choice of words and how to put them together may
have been a bit more comical sounding).<span style="margin: 0px;">
</span>I have cried more about insurance troubles and frustrations, than I have
cried in probably a few years.</span><br />
<br />
<span style="font-family: "calibri";">I feel like Brayden’s medical team (who is AMAZING) and I have no control
over meeting Brayden’s needs.</span><br />
<br />
<span style="font-family: "calibri";">And if you know me, not having control, does not suit me
well.<span style="margin: 0px;"> </span>Yesterday, I needed control over
something so I cleaned and purged many items from the garage.</span><br />
<br />
<span style="font-family: "calibri";">Lord, help us.<span style="margin: 0px;"> </span>I am
exhausted. I am so tired of being stressed, especially over stuff that I should not be stressed about.</span></div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-16110151618535359542017-08-15T13:01:00.001-04:002017-08-16T09:01:42.590-04:00the Brothers<span style="font-family: "georgia" , "times new roman" , serif;">This blog is all about Brayden.<span style="margin: 0px;"> </span>But what about his older brothers, Carter and
Luke? </span><br />
<div style="margin: 0px 0px 11px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_iYDwk2hPgCAUkkYQae_J8u4URxiINv_YubdAKL6DAaWOFGBTL5sDFOsiOuQ_zyURsoTQ0X9yymizzmyePKam8Y72M9uFWcXU9X8lFaOa6V8RSHwRk6T5h7jDgIdG04UliQBFUMF608/s1600/CLB3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="267" data-original-width="400" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_iYDwk2hPgCAUkkYQae_J8u4URxiINv_YubdAKL6DAaWOFGBTL5sDFOsiOuQ_zyURsoTQ0X9yymizzmyePKam8Y72M9uFWcXU9X8lFaOa6V8RSHwRk6T5h7jDgIdG04UliQBFUMF608/s320/CLB3.jpg" width="320" /></span></a><span style="font-family: "georgia" , "times new roman" , serif;">How is it to be Carter and Luke?</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">My heart has been heavy for them lately.<span style="margin: 0px;"> </span>In their short lives, they have seen and
heard, had front row seats to very serious and traumatic events. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "calibri";"><span style="font-family: "georgia" , "times new roman" , serif;">As Brayden’s big brothers, they had to quickly learn that
life is not about them.<span style="margin: 0px;"> </span>They have seen
their brother in very dire situations, ICU, hospitals, tests, etc.<span style="margin: 0px;"> </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">They know how to operate the feeding pump, pulse ox, and
Brayden’s other machines. They know how to handle Brayden’s seizures, poor
breathing, projectile vomit (even with blood), hold gauze over open holes in
Brayden’s body when tube comes out…all have become somewhat of a disturbing norm
to them but nonetheless it can add chaos to a day.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Their life always has a level in instability.<span style="margin: 0px;"> </span>Many years they have watched their parents
rush off to the hospital or spend days with doctors, not quite knowing where
they would end up, whether at a neighbors or in the ambulance with their
brother.<span style="margin: 0px;"> </span>Not knowing when anyone would
be home and learning to be self sufficient.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div style="margin: 0px 0px 11px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEIKo16xcf8TC6JDcNUSKsv5VNgIMSeWQZC49Ac12Zftd-PrHW7vVPVeVVfkyGtyDqi5zzPSRdOgKclv8Ax_nJQX2XnkIqXfE9ThEP3bww7sVxd0wgPupsLbjjpvABzwwC1SyAfeu7WQk/s1600/CLB.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="148" data-original-width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEIKo16xcf8TC6JDcNUSKsv5VNgIMSeWQZC49Ac12Zftd-PrHW7vVPVeVVfkyGtyDqi5zzPSRdOgKclv8Ax_nJQX2XnkIqXfE9ThEP3bww7sVxd0wgPupsLbjjpvABzwwC1SyAfeu7WQk/s1600/CLB.jpg" /></span></a><span style="font-family: "georgia" , "times new roman" , serif;">Even when not rushing to hospital, there is always a chance
for instability within the house.<span style="margin: 0px;"> </span>A
simple example, I was loading Brayden so I could take the boys to
practice.<span style="margin: 0px;"> </span>But as I was loading,
Brayden’s feeding tube popped out…which delays leaving and possibly making them
late for practice.<span style="margin: 0px;"> </span>Many nights they
cannot be loud, have friends over, etc. because Brayden needs to a quiet
environment.<span style="margin: 0px;"> </span>When Brayden does come out
with us, we always have an exit plan or a plan in case things go sideways with
him.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Plans constantly change, vacations not taken, events not
attended/adjusted but we still try to find fun for them and keep their routine
as best as possible.</span></div>
<div style="margin: 0px 0px 11px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKfzmhyOxzdSpR5Y9tgehzUWI1fWKLO8mSd9fJkJluUEdiPSjhIxH1sIy73OuxrgdxoMUEeYZ8CsIW8Cyg9xA6AxwnT7J13FltLZUU10ybjh1pzn4KzMdmlxMRN70bSweMxvmd8Uiz6Ts/s1600/CLB2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="400" data-original-width="266" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKfzmhyOxzdSpR5Y9tgehzUWI1fWKLO8mSd9fJkJluUEdiPSjhIxH1sIy73OuxrgdxoMUEeYZ8CsIW8Cyg9xA6AxwnT7J13FltLZUU10ybjh1pzn4KzMdmlxMRN70bSweMxvmd8Uiz6Ts/s320/CLB2.jpg" width="212" /></span></a><span style="font-family: "georgia" , "times new roman" , serif;">The boys handle people constantly in and out of our house
who are part of Brayden’s care (some of which have been good and some have not).</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Brayden’s needs trumps all others.<span style="margin: 0px;"> </span>Fair or not.<span style="margin: 0px;">
</span>Every bit of their life, has to go through the filter of Brayden.<span style="margin: 0px;"> </span>We try to not make it seem like that is not
the case but there is just no way around it.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">They have seen (most often than I care to even admit) their
parents completely depleted, exhausted and checked out because of dealing with
the heaviness of Brayden’s medical events and needs.<span style="margin: 0px;"> </span>They have seen fear and sadness in our eyes
and in our countenance. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">They know the seriousness of life as we have had discussions
with them about Brayden’s health status. 10 years they have been a part of
their brother’s roller coaster.<span style="margin: 0px;"> </span>And now,
as we enter a new phase of Brayden’s care in the palliative path.</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">-----</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Then in the last couple of years Carter and Luke have seen
and heard too much beyond just Brayden’s needs.<span style="margin: 0px;">
</span>Things that will mark their childhood and how they see life and death. Just how many hard conversations have we had with them?!</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Jeremy’s mother.<span style="margin: 0px;">
</span>Carter and Luke realizing that their dad found his mother and we had to
rush to the ER to help in some way.<span style="margin: 0px;"> </span>Then
Jeremy spent the next several (many) months rushing to find her, talk to her
and to check on her.<span style="margin: 0px;"> </span>Leaving Jeremy and
his siblings in a constant state of concern and worry. Carter and Luke have
seen their father physically collapse from those events.<span style="margin: 0px;"> </span>Not even two years ago, Jeremy got the phone
call that his mother died.<span style="margin: 0px;"> </span>Carter and
Luke were standing right next to him as he heard the words from his father.<span style="margin: 0px;"> </span>Jeremy rushed off to his parent’s home.<span style="margin: 0px;"> </span>Carter and Luke knew immediately what the
call was about because of the months leading up to that day.<span style="margin: 0px;"> </span>They found out the dramatic, awful details
of the past several months (not by our choice, we tried to soften the
details).<span style="margin: 0px;"> </span>The loving grandmother that
they saw many times in a week, was gone and even the previous months,
she was just not herself.<span style="margin: 0px;"> </span>Depression and
suicide is now part of our family story and words they know all too well.<span style="margin: 0px;"> </span>Since then, every holiday, birthday and event
are now different since their grandmother was the center of the Jenkins
activities.<span style="margin: 0px;"> </span>The ripple of effects are
constantly around. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Our house fire and rental house.<span style="margin: 0px;"> </span>Being displaced for several months, the chaos
and troubles that it brought.<span style="margin: 0px;"> </span>And if I
went into any detail about it, you just would not believe it…if anything could
go wrong with the process and the rental it did.<span style="margin: 0px;"> </span>It was awful.<span style="margin: 0px;"> A</span> home should provide safety and comfort was just not happening. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "calibri";"><span style="font-family: "georgia" , "times new roman" , serif;">Carter and Luke watched as other families have lost their
child or loved ones, been to services and seen those moments.<span style="margin: 0px;"> People that had been a part of their lives. </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "calibri";"><span style="font-family: "georgia" , "times new roman" , serif;">This summer the boys and I planned to have a day with my
brother and his family.<span style="margin: 0px;"> </span>We planned to
meet at the zoo.<span style="margin: 0px;"> </span>As we packed the car that morning, I got a message that their 3 week old baby was up all night
and they were taking him to the ER; seemingly nothing to concerning but wanted
to have him checked.<span style="margin: 0px;"> </span>The boys and I
decided to still head to the zoo, thinking we could pick up the baby’s older
brother and/or still see them either for lunch or at their home after they saw the doctors.<span style="margin: 0px;"> </span>About an hour later, as we were driving to
DC, I got a phone call.<span style="margin: 0px;"> </span>It was my mom,
screaming and sobbing that baby James had died, without cause or explanation.<span style="margin: 0px;">
</span>I had to pull the car over on the highway, sat and sobbed with my mom,
my boys sitting in absolute silence…they have heard that kind of phone call
before.<span style="margin: 0px;"> </span>I attempted to gather thoughts,
get back on the road and figure out the next steps.<span style="margin: 0px;"> </span>The following days were hard.<span style="margin: 0px;"> </span>Carter and Luke saw their normally
fun-loving, funny, joke-cracking Uncle Matt and Aunt Betsy broken in a way that
is indescribable.<span style="margin: 0px;"> </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Just over a month later, Jeremy had a surprise for my 40<sup><span style="font-size: x-small;">th</span></sup>
birthday.<span style="margin: 0px;"> </span>He had all the boys situated
for about 24 hours, so he and I could get away for a night.<span style="margin: 0px;"> </span>As we were settling in to our hotel, my
parents were in the car with Luke, heading to Carter’s basketball tournament.<span style="margin: 0px;"> </span>My father got a phone call.<span style="margin: 0px;"> </span>His father passed away.<span style="margin: 0px;"> </span>Luke heard it all.<span style="margin: 0px;"> </span>Luke’s healthy Great-Grandpa-at-the-Beach,
had just seen his doctor a few days before and got a clean bill of health.<span style="margin: 0px;"> </span>Luke riding with his Papa and Mimi as they had to
turn the car around.<span style="margin: 0px;"> </span>Jeremy and I left
my birthday get away and headed to get Carter from his basketball.<span style="margin: 0px;"> </span>Carter seeing us arrive, he obviously knew
something was not right.<span style="margin: 0px;"> </span>After his game, we explained to him what was happening.<span style="margin: 0px;"> </span>We headed home so we could pack up and head
to be with family. </span><br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "georgia" , "times new roman" , serif;"> -----</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">In all of this, we have constantly talked to the boys about
God’s plan.<span style="margin: 0px;"> </span>The promise of heaven. It is
hard to have those conversations with them.<span style="margin: 0px;">
</span>Because, even as adults, it is hard to understand these events, let alone
help your children understand.<span style="margin: 0px;"> </span>Sometimes
we just do not know how they are taking it all in.<span style="margin: 0px;"> Oh h</span>ow much I want to protect their hearts, want
their faith to grow and not be crushed by the seeing the hardest parts
of living in such a broken world. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">As we make decisions for Carter and Luke, moving forward,
trying to help find the best path for them, I ask that you pray for them and
for us.<span style="margin: 0px;"> </span>So much of our efforts have been
in different directions over the years. The more people that look out for them,
pray for them, love them and mentor them, the better, especially as we enter
the teen years. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Thankfully Carter and Luke have been handling all of it quite
well.<span style="margin: 0px;"> </span>It seems as though their hearts
have been protected in some way but there are times that they just want to be
care-free kids.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "calibri";"><span style="font-family: "georgia" , "times new roman" , serif;">And please pray for our family and friends that are grieving
the loss of their children and loved ones.<span style="margin: 0px;"> </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Trauma and grief changes everything.</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div style="margin: 0px 0px 11px; text-align: center;">
<span style="font-family: "calibri";"><span style="font-family: "georgia" , "times new roman" , serif;">Proverbs 3:5 <i>Trust in the Lord with all your heart and lean
not on your own understanding.</i></span></span></div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com1tag:blogger.com,1999:blog-2395370242575951913.post-82421554139960983592017-08-09T11:47:00.002-04:002017-08-09T11:47:42.447-04:00Brayden's Health UpdateBefore getting into any details, I just have to say that Brayden is doing well (at least his version of doing well).<br />
<br />
Brayden's spring time, left us in a scary and overwhelming position of having discussions and attempting to make decisions that no parent ever wants to address when it comes to the care and medical care of your child. Yes, all of it was a long time coming but I did my best to push it away as long as possible.<br />
<br />
Currently, Brayden's not-breathing/not-responding episodes have been few and far between. Really going on about 6 weeks of no major episodes. <br />
<br />
We still check his pulse ox regularly (take it with us too), haul around oxygen tanks (because I never want to be stuck with out a working one again). <br />
<br />
Brayden did make it to ESY (summer school) some...not as often as I would like...and he was not home as often as he would like.<br />
<br />
Thankfully, Brayden has been relatively stable for the summer. We needed him to be.<br />
<br />
And here is the cruel irony of this summer:<br />
<br />
Brayden had a pretty bad bill of health.<br />
Brayden's cousin, James, a three week old baby, totally healthy.<br />
Brayden's great-grandpa, William Johnson, even though he was 94, had just seen his doctor and declared totally healthy (the man had only ever been in the hospital once in his entire life).<br />
<br />
Brayden, whom we had been in discussion about DNRs, medical treatments or lack thereof, had a healthy summer, without any troubles.<br />
James passed away, without cause or explanation, at the emergency room in a matter of moments.<br />
Great-Grandpa, passed away at his beach home, seemingly in his sleep.<br />
<br />
----<br />
<br />
God called James and Great-Grandpa. Why? I just do not think we will know those answers on this side of heaven. <br />
<br />
<i>One day, we will see. One day, the arc of our stories will all make perfect sense. One day, we will trace the lines of our scars and find them to have fallen in the most pleasant of places, to see in them our great inheritance. One day, we won't need to hope, nor will we need to be healed because we will be face-to-face with the source of both, the source of everything. Jesus.</i><br />
<i>And in the glory of His face, the darkest suffering and loss we have endured will face like shadows of daybreak. Until then, the moments of releasing our lives into the hands of a God we cannot see are the closest to wholeness we will come on this side of eternity. This is our truest healing - the healing of our souls - and it sustains us when we wake up tomorrow to an unknown but hopeful new day.</i><br />
<div style="text-align: right;">
<span style="font-size: xx-small;">- Hope Heal by Katherine & Jay Wolf</span></div>
<span style="font-size: x-small;"></span><span style="font-size: xx-small;"></span><br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-68257888695618194112017-06-12T08:17:00.001-04:002017-06-12T08:59:25.720-04:00The Real behind the Facebook PostsOver on <a href="https://www.facebook.com/carrie.l.jenkins.3">Facebook</a>, I tend to post the fun, light bits happening throughout the week. Never quite seems to be the place to share the hard stuff, unless I post a link to this blog.<br />
<br />
This weekend, <a href="https://www.facebook.com/carrie.l.jenkins.3">my Facebook</a> posts felt inauthentic. Because behind those photos of fun, Jeremy and I were tired and stressed.<br />
<br />
<b>Friday night post: Great concert with Great friends.</b><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMOR6lxEGT3OaU3mUtPIK5cdmXvB4dCpYFdfO2mH4sAaSrzwP_CPd6rGeoSKyfscQ14tltJgJybLRCJTN-I_pcN-bRofHsUk68Ou0ssEJk1LrnDgU6aHvMxpQTReCvLzXYxOl1XlwO120/s1600/June3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1115" data-original-width="751" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMOR6lxEGT3OaU3mUtPIK5cdmXvB4dCpYFdfO2mH4sAaSrzwP_CPd6rGeoSKyfscQ14tltJgJybLRCJTN-I_pcN-bRofHsUk68Ou0ssEJk1LrnDgU6aHvMxpQTReCvLzXYxOl1XlwO120/s320/June3.jpg" width="215" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhwC1Mn8w9d6vnC9zcia6m4r0UIg79s0LhMAEoqD4N-fmhf0ltVHeoyCc4LR7sDh9BShP7e4ylOivjRfS1_oc5KZFxizgLoHjL6KfQDb3s1zRHS5m2yOqt3Tyq-T12XQlSAy89e-hDpGY/s1600/June6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a> Truth behind those photos, started Friday morning. Jeremy and I were driving Brayden to DC for an appointment. On the way, we got a phone call from the middle school. Carter was sick and needed to go home. I may have asked, "Well, how sick is he really?! Because we cannot come get him." Then there was scrabbling, trying to find someone to pick up Carter and drop him at home.<br />
We made it to Brayden's appointment, Carter made it home. We mee<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhwC1Mn8w9d6vnC9zcia6m4r0UIg79s0LhMAEoqD4N-fmhf0ltVHeoyCc4LR7sDh9BShP7e4ylOivjRfS1_oc5KZFxizgLoHjL6KfQDb3s1zRHS5m2yOqt3Tyq-T12XQlSAy89e-hDpGY/s1600/June6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhwC1Mn8w9d6vnC9zcia6m4r0UIg79s0LhMAEoqD4N-fmhf0ltVHeoyCc4LR7sDh9BShP7e4ylOivjRfS1_oc5KZFxizgLoHjL6KfQDb3s1zRHS5m2yOqt3Tyq-T12XQlSAy89e-hDpGY/s200/June6.jpg" style="cursor: move;" width="150" /></a>t with 10 different people going over Brayden's medical history for hours, in extraordinary detail. Hard conversations. Then off to the lab for a massive amount of blood work (which means too many sticks for Brayden). Absolutely exhausting. I will go in to detail about this appointment in another post. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhwC1Mn8w9d6vnC9zcia6m4r0UIg79s0LhMAEoqD4N-fmhf0ltVHeoyCc4LR7sDh9BShP7e4ylOivjRfS1_oc5KZFxizgLoHjL6KfQDb3s1zRHS5m2yOqt3Tyq-T12XQlSAy89e-hDpGY/s1600/June6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a> We headed out of Children's, since it was a Friday afternoon in the summer, that means tourists everywhere (for the love people, please use the cross walks and follow the signs) and lots tourist and commuter traffic. Finally made it home. Checked on Carter, who was rocking a temp over 102 (oops, sorry I made him go to school but he did have a math exam). Our Ms. Stephie arrived to take care of Brayden for the night and now Carter. Jeremy and I changed clothes because lets be honest after being in the hospital all day, you feel slimy. Headed out the door for more traffic. Ended up being an hour late to meet our friends. On the way, Jeremy and I thought this night out could be a really good idea or a really bad idea after the day we had. Thankfully the time out was wonderful but, boy the next morning we felt rather old and tired.<br />
<br />
<b>Sunday post: Basketball Camp for Carter and Luke.</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieGpva2f70hZaL1R_XYxSd6zA9z4LFviGEIslY0qiHlsPS28a5s4z9RWoDFFKeyRs4jECuLg9CeBqPGH2rJoAP5aX0y4nmL8j4aSKjvBjO3gJIUpzoN4Bv3d1HVw3MiFoEKR_Gxb1WMbA/s1600/June2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1034" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieGpva2f70hZaL1R_XYxSd6zA9z4LFviGEIslY0qiHlsPS28a5s4z9RWoDFFKeyRs4jECuLg9CeBqPGH2rJoAP5aX0y4nmL8j4aSKjvBjO3gJIUpzoN4Bv3d1HVw3MiFoEKR_Gxb1WMbA/s320/June2.jpg" width="232" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieGpva2f70hZaL1R_XYxSd6zA9z4LFviGEIslY0qiHlsPS28a5s4z9RWoDFFKeyRs4jECuLg9CeBqPGH2rJoAP5aX0y4nmL8j4aSKjvBjO3gJIUpzoN4Bv3d1HVw3MiFoEKR_Gxb1WMbA/s1600/June2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a> The day started early with Jeremy and Luke heading in one direction to a basketball tournament. Brayden and I were taking Carter to a basketball tournament in another direction, since Carter was feeling much better. I continually underestimate how much effort and time it takes to get Brayden out the door. I go to scoop Brayden out of bed so we can leave...but Brayden has soaked his diaper, chux, clothes and bed. Our on time departure was not happening. And if you know Carter at all, then you know he likes things to be just so. Being late is not something that goes over well with him.<br />
The car was also packed with Carter and Luke's bags and gear for basketball camp since we would not have time to go home. Being gone all day, means I had to pack everything for Brayden as well (feeding pump, oxygen tank, meds, emergency bag with all the "just-in-case" things).<br />
Carter's team won. Jeremy and Luke arrived at Carter's game. Carter was still in the tournament and now he was going to be late to camp (did I mention how much he loves being late). Brayden and I, headed out with Luke to take him to camp. In a span of just a few hours, we were in VA to West VA to MD for camp. Brayden was not having it, fussing started and was not stopping. We arrived to camp, Brayden not having that either. I was trying to check in Luke. Luke was so excited to find his friends that his listening skills were failing. Trying to get him to check himself in because there was not much space to maneuver Brayden's wheelchair around. Asking Luke about getting his room key, he had no idea. Asking Luke about paperwork needed or dorm location or other check-in items, he had no idea. And Brayden is fussing the entire times so I could not concentrate well either.<br />
The campus for basketball camp has beautiful old stone buildings, which means accessibility can be questionable. We spent about 30 minutes, going in and out of buildings, trying to find the elevator because we got many different "helpful" directions for others. Finally made it to Luke's room (after being in 3 wrong locations)...over 90 degrees outside and Brayden still fussing.<br />
Carter being late to camp, I checked him in and thought it was a good idea to get his room set up so he could just head to the gym when he arrived. Brayden did not like this idea. But by the time Brayden and I made it back in the car, Brayden actually like the idea of being in the car and away from the basketball camp chaos. Carter finally arrived with Jeremy, we handed him the camp stuff and he was on his way. <br />
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Brayden and I followed Jeremy's truck home. Brayden was letting it be known, that he was not pleased with his Sunday. And the only way we know how to calm him in the car, is it roll the windows down and blast music. Over 90 degress outside (and I already started the day off sweaty from loading all the camp gear and Brayden) with the windows down, one hot steamy car ride home.<br />
We made it home, Brayden in his bed and he wanted nothing to do with me.<br />
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And the bonus for the day, our dog "found" a ground hog and left for our deligh<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO6R0rD01vmk84eOj35yqu24ijKfDFbrPKV95CNQTtGFJGwfDBgytkXFgp04Wkb3loJSPGptprwWjxFi2RnVqEAan1MdFDv4GbDwOsUoFV1xRJymMOndBt3CmvVIMEP_Wul_pIq_t6D-U/s1600/June4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="297" data-original-width="389" height="152" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO6R0rD01vmk84eOj35yqu24ijKfDFbrPKV95CNQTtGFJGwfDBgytkXFgp04Wkb3loJSPGptprwWjxFi2RnVqEAan1MdFDv4GbDwOsUoFV1xRJymMOndBt3CmvVIMEP_Wul_pIq_t6D-U/s200/June4.jpg" style="cursor: move;" width="200" /></a>t in the back yard when we arrived home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO6R0rD01vmk84eOj35yqu24ijKfDFbrPKV95CNQTtGFJGwfDBgytkXFgp04Wkb3loJSPGptprwWjxFi2RnVqEAan1MdFDv4GbDwOsUoFV1xRJymMOndBt3CmvVIMEP_Wul_pIq_t6D-U/s1600/June4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO6R0rD01vmk84eOj35yqu24ijKfDFbrPKV95CNQTtGFJGwfDBgytkXFgp04Wkb3loJSPGptprwWjxFi2RnVqEAan1MdFDv4GbDwOsUoFV1xRJymMOndBt3CmvVIMEP_Wul_pIq_t6D-U/s1600/June4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com1tag:blogger.com,1999:blog-2395370242575951913.post-66078659116013434272017-05-21T17:34:00.000-04:002017-05-24T09:02:51.824-04:00Take a breath<div>
The past few months, Brayden has been sleeping 18-20 hrs a day, without much cause or reason.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXlSEhmvMUX6XzNCyC29rb35P-aRGb8AKRNFWSJF3J7_LkZKDiah9mmIt2QE8PXU702pcWhvGsrZ41BEiWlzq69NlMF3D66c65y_c6t3FWNgTBtjF9Mzcv5lznhhiJBRA_63ChkxdKMOs/s1600/Image-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXlSEhmvMUX6XzNCyC29rb35P-aRGb8AKRNFWSJF3J7_LkZKDiah9mmIt2QE8PXU702pcWhvGsrZ41BEiWlzq69NlMF3D66c65y_c6t3FWNgTBtjF9Mzcv5lznhhiJBRA_63ChkxdKMOs/s320/Image-1.jpg" width="320" /></a>The past few months Brayden has had <i>severe</i> apnea episodes during the day (not at night when we expect them to happen during deep sleep)...basically his brain forgets to tell him to breathe/exist. He becomes <i>unresponsive</i>, even to the most obnoxious stimulus. These episodes seem to come on quickly. His oxygen saturation stats drop significantly. We have to quickly attempt to wake him (which does not work every time) or hook him up to his BiPAP or oxygen. Then it takes awhile for his oxygen/breathing to normalize. </div>
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We sent video to the doctors. Then we went in for bloodwork. All of his blood work looks good. All except the CO2 levels in his body. They are elevated, not quite to a hospital-needed-level, but elevated enough to show there is a chronic problem with his breathing and his body not properly releasing the CO2. Thus the likely reason for many hours of sleeping and the other apnea episodes.</div>
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Brayden's brain does not always seem to be sending him proper signals. And now it is having an impact on his breathing. </div>
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There is no intervention that we can do (or are willing to do) to improve his breathing. We will continue to use BiPap and oxygen at home, while these provide him air, it actually serves as a constant annoyance to remind his brain to breathe. Unfortunately, this is does not seem like something that will get better for him over time, it would get worse. As for the amount of time that it would get worse, is very undetermined, it could be weeks, months, years. </div>
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But we have crossed over in to a more severe/serious category with Brayden's health, as well as decisions that Jeremy and I would need to make regarding any (if any) medical intervention from here on out.</div>
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The last few weeks, Jeremy and I have been attempting to lay the groundwork for Brayden's undetermined future. We have not shared much until now because we really needed to take in a lot of information, sort through it with his doctors and decide how best to handle it all.</div>
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We talked with <a href="https://childrensnational.org/choose-childrens/deciding-on-care/support-for-families/panda">Palliative Care</a> at Children's, Brayden's pediatrician and neurologist. All have given their honest opinions and helped lay out our next options.</div>
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Here is where we are thus far:</div>
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<ul><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhi0pf2nPFpS-3SyJAia8O2GCzT1FYU0ydNaHmo8CY3q3cjsoP20uVEbywNb_aCWxrfJ5Tb_IgUXMor0eJK2Xr8GIWRWbYvmNLb3i1FCeKtshySP6NXivj2nlbW1ErAO_rJPk_PtA5tf4/s1600/FullSizeRender12.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhi0pf2nPFpS-3SyJAia8O2GCzT1FYU0ydNaHmo8CY3q3cjsoP20uVEbywNb_aCWxrfJ5Tb_IgUXMor0eJK2Xr8GIWRWbYvmNLb3i1FCeKtshySP6NXivj2nlbW1ErAO_rJPk_PtA5tf4/s320/FullSizeRender12.jpg" width="320" /></a>
<li>Brayden has been consistently having apnea episodes where he is in unresponsive. We have been toting around oxygen tanks and often his BiPap machine, wherever he goes. We are trying to figure out the best way to manage the episodes, since they are happening several times a week. With oxygen or BiPap we will continue to use as needed during the day (he is on BiPap for bedtime, through the night already). </li>
<li>Because he is having these not-breathing episodes, we have to plan for different scenarios in case his breathing cannot be corrected through his supplemental (nasal cannula) oxygen or his BiPap. <i>Putting together a plan that would include medical interventions that we would allow or not allow</i>. Plans that his nursing agency, school, doctors, hospital would be aware of in case of emergency. Children's Palliative Care team will help us put together a written plan. </li>
<li>To help facilitate care through Brayden's doctors and the Palliative Care team, we are looking into an additional nursing agency that would come to the house every couple of weeks, kinda like a home doctor visit. This would be help his doctors monitor Brayden better at home.</li>
<li>Technology has changed since Brayden was a baby. Brayden has never had a diagnosis. We have been referred to the neurogenetic team to look at a couple of possible tests. With the technology available now, through bloodwork, we could have some insight into Brayden's brain/body. Whatever the findings or diagnosis, it will not change or have any impact on Brayden's treatment or day-to-day life. The meeting with the neurogenetic team and bloodwork will be in the coming weeks but the results could take months.</li>
<li>MRI, the neurologist is requesting a MRI (also helpful for the neurogenetic doctors). Brayden has not had an MRI in many years. But having a current MRI, they could compare his previous ones to see if/how there has been any degeneration. </li>
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<i>Basically, the overall plan is to focus on Brayden's comfort and quality of life, rather than seeking out any major medical interventions.</i> All of his doctors agree with this (in fact were the ones who brought it up to us anyway). Also for Jeremy and I to plan for what-if scenarios, so that he and I are on the same page and we can communicate that to those who help care for Brayden day-to-day or in an emergency.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZuRoOeXBim_JQLq-F_85OA1AjkRXAT572Yp44vOHaBg47wD7wH8PyXtBTzrWEJGK2Mr4CMpkGDWl5ba27vF_3dC9L9jMtZvYyeWL4H05p2ZXQpHU5Csq0WGKIH2FeMgcxIhccOEyuzk/s1600/FullSizeRender13.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZuRoOeXBim_JQLq-F_85OA1AjkRXAT572Yp44vOHaBg47wD7wH8PyXtBTzrWEJGK2Mr4CMpkGDWl5ba27vF_3dC9L9jMtZvYyeWL4H05p2ZXQpHU5Csq0WGKIH2FeMgcxIhccOEyuzk/s320/FullSizeRender13.jpg" width="240" /></a>Honestly, we are attempting to just shift in our mindset of how we take care of Brayden. For example, I spent many years talking (or arguing, depending on who it was) with Brayden's home care nurses about his time in bed. I have always been adamant that he would NOT be a bedridden boy, basically he was a little boy and needed to get out participate in life, however he could. Now, it is more like...well, Brayden is so very content and happy in his bed so why push him. He loves his bed.</div>
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We will be focusing more on Brayden being content, comfortable and happy, rather than seeking further medical interventions (but still continuing with his current plan of care) and even just in basic things like not forcing him to school all the time (school is still good for him but I will let up with trying to get him there as much as possible).</div>
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Lots of very heavy, hard conversations over the past few weeks. We very much trust and respect Brayden's pediatrician and neurologist, who are all on the same page.</div>
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And we whole-heartedly trust God, for whatever the plans may be.</div>
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One thing we do not have to worry about is Brayden's weight...the scale hit 85 lbs this week.</div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com6tag:blogger.com,1999:blog-2395370242575951913.post-33380430220027417772017-05-14T20:00:00.000-04:002017-05-18T08:40:26.849-04:00For the love of footballA day in DC for spring football. And it happened to be Mother's Day. We were determined to make it a family day (forced-family-fun).<br />
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Brayden decided to have a breathing episode on the way to the game. A quick Chinese-fire-drill so momma could sit in the back to monitor Brayden's breathing and hook him up to oxygen.<br />
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Game time and Brayden was entertained by the throw-back 95.5, 1990s music (<a href="https://www.youtube.com/watch?v=qG9ZWUitFik">Let me clear my throat</a>...).<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio2GwL8tZkfXH4fNrzuudvQeXveUb3BEzIWcV2nVjKgqNFSX4jfQVH61NdNI7ArAoUhI9WPy4ack1Xhg6rUxqhU6Fs9N5YfBeg9KxkKb7P9659ZmxZE5IIQ_9E8-pUtDKNCju94fIHpas/s1600/FullSizeRender3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio2GwL8tZkfXH4fNrzuudvQeXveUb3BEzIWcV2nVjKgqNFSX4jfQVH61NdNI7ArAoUhI9WPy4ack1Xhg6rUxqhU6Fs9N5YfBeg9KxkKb7P9659ZmxZE5IIQ_9E8-pUtDKNCju94fIHpas/s400/FullSizeRender3.jpg" width="400" /></a><br />
Game was won but Carter was crushed, literally. A play gone wrong, he landed on a player's helmet and then the biggest kid on the field (possibly 3x the size of carter) landed on him. Hip injury, trip to ER and thankfully a hip contusion (not a break). <br />
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Nothing but fun and Mother's Day lunch from the concession stand.Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-64320212372229903532017-05-10T08:18:00.000-04:002017-05-18T08:41:13.662-04:00Those loviesBrayden's animals. His aromatherapy animals. His favorite things.<br />
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His puppy has been the fav for quite a while. The favorite animal gets prime position in his bed, placed by his left shoulder for the best possible cuddling. Puppy has held that spot for many months...until froggie came along.<br />
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Brayden actually head bumped puppy out of the bed. Rather proud of himself, as you can see on his face. He wanted froggie there.</div>
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And there froggie will stay.</div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-73032443272228998512017-04-17T08:45:00.000-04:002017-05-18T08:46:05.602-04:00This guy is 10It is his birthday and we send him to school.<br />
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He is totally thrilled (or in total denial).<br />
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Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-65457451846346353402017-04-17T07:00:00.002-04:002017-04-17T07:00:21.453-04:0010 years<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmd-hfNI7TsG24cDpIfep5aEAMpeLKZkfYmPWCf53ucMjT9_a00_kRdozboWaNSDBr2Otm2aSx5f4lEoaXyoLBvak3tULFMvWDr_2qSEslvIfQbLxlc7DehdVYX_3HKtLTqQ5t-Mmyat0/s1600/2017-04-16.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmd-hfNI7TsG24cDpIfep5aEAMpeLKZkfYmPWCf53ucMjT9_a00_kRdozboWaNSDBr2Otm2aSx5f4lEoaXyoLBvak3tULFMvWDr_2qSEslvIfQbLxlc7DehdVYX_3HKtLTqQ5t-Mmyat0/s640/2017-04-16.jpg" width="426" /></a>10 years ago, Brayden was born. 10 years ago today, we were still delightfully oblivious to any of Brayden's health problems. The top picture has always been hanging in our kitchen, the sweetness and frankly a lot of innocence, helps me remember that in all of this there is joy, simple joy. It was not until a couple of days later that we started to discover his brain was not formed properly. But God knew and thankfully all of Brayden's troubles have been slowly rolled out <span class="text_exposed_hide">...</span><span class="text_exposed_show">over the years because there is just no way we could have handled them all at once. Brayden's from the beginning, such truth:<br /> Psalm 139: 13-18<br /> "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."</span></div>
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<span class="text_exposed_show">Today we celebrate his 10 years but also that we made it 10 years! I would never let my mind wander, to think about him getting older. We have never known a diagnosis or how much time we have with him. Whoa, we made it 10 years!<br /> Oh how much we love him!<br /><br /> In honor of his birthday, donate $10 for his 10 years to Jill's House. <br /><a href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.jillshouse.org%2Fdonate&h=ATO3BTX_AGYA-ttHN5Pp0VZQ7LPanehD9Cb5Bo5MF2uIk4W5JUTwLWcJmKVxq_1festbigm_5wyQA8TcUmhCGtEGOoYRzUGboh1eMfI2-mUj41G_txcF04uq6awmbyHqi641y9Oj4-wOClsyvJXr0SogZHj4_A&enc=AZNMM-zvVAJtj4zXNddyPTO5tmUKuHrGaydAttp_Ehbdwd_NAux4ti6pgWezpOYQltRv6-5dqezlBbVaLW21_tGzDzI21XTf4Dj7vbzXfPT77X_qLMj9XQgxYMuHpRVCE0PhJii-eg7HzIEUo8-DZdyBkZMvojLUtibXiUrnO2rggYUTLuhkuZLgQx7afP28vv0&s=1" rel="nofollow" target="_blank">www.jillshouse.org/donate</a> <br /> comment: In honor of Brayden's 10th birthday.<br /> for more info on Jill's House - <a href="https://l.facebook.com/l.php?u=http%3A%2F%2Fjillshouse.org%2F&h=ATNtkYgPhNiSh13uF6Ch6ZMs1Vlc9tGXRmeoVZUZuJwQ1ZoJOTEgeBNr4lgQasmjVuRKSeJMiYysVBFbXL1Ie2NogDNQxzA2E5_tgwyt3pon2Glt9Q_QvZip47tR_mgHMqspYfIMmyg-l7cQ4O6ZxeRBUlLE3A&enc=AZOr8-EIAfnQ3F56_j5558rmuADaDllneV8X3cARG_T-m-_w6MrVtYuazurpG5rcpcsAyqMvm2BEvsuSViS-haIxboPAhQTaQnbuLL8D88AJ86NVCN7D2fG2Y9AicpL2unfwOv9VjZTu0WzTcspUZ8UIk66Lv0vjlpqxOMwn1N4urXEeYrRbQJ_syPHlLkhq97o&s=1" rel="nofollow" target="_blank">jillshouse.org</a></span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-62065466203723454962017-04-16T10:47:00.000-04:002017-05-18T08:46:43.513-04:00Georgetown Cupcake<a href="https://www.georgetowncupcake.com/">Georgetown Cupcake</a> donated 7 dozen cupcakes for Brayden's birthday. How did this happen?!<br />
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It all started in 2008, we were still trying to understand Brayden's ever-changing needs. We discovered a little cupcake shop (Georgetown Cupcake's original place). Stopping for cupcakes became a part of our DC routine. A day at the hospital...well that certainly deserves a cupcake. Their little pink box somehow added a bit of happiness to whatever happened that day. When Carter and L<span class="text_exposed_hide">...</span><span class="text_exposed_show">uke were little, they had to come along to many hospital and doctor appointments, so why not bribe them with cupcakes?! Then the cupcakes became part of our celebrations for school, birthdays, etc. Well...we may have talked about our cupcake stops quite often so friends (you know who you are) brought us cupcakes, when they happened to be downtown. Our pediatrician even got in on the action, texting us about the secret cupcake of the day when we were downtown (FYI, if you know the secret cupcake, ask for it and it is free). </span><br />
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<span class="text_exposed_show">I knew that if we made it to Brayden's 10th birthday, Georgetown Cupcakes had to be a part of it. Brayden does not eat but he does like the icing. Georgetown Cupcake is just part of our trekking back and forth to DC for many years now. I sent Georgetown Cupcake a message about Brayden's birthday, they replied immediately and offered to comp the order. Their kindness and generosity is all the more reason to love it. I cannot thank them enough for being a part of Brayden's big birthday celebration!<br /><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/georgetowncupcake?source=feed_text&story_id=10212827966441840"><span class="_5afx"><span aria-label="hashtag" class="_58cl _5afz">#</span><span class="_58cm">georgetowncupcake</span></span></a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/dccupcakes?source=feed_text&story_id=10212827966441840"><span class="_5afx"><span aria-label="hashtag" class="_58cl _5afz">#</span><span class="_58cm">dccupcakes</span></span></a></span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-5316742189749614252017-04-06T20:25:00.000-04:002017-05-18T20:25:48.852-04:00Adaptive Rec DayEvery year a local high school hosts Adaptive Rec Field Day. Special Ed classes come to the school for all the fun.<br />
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And it all starts at the entrance of the school. Welcomed by the marching band, mascot and the school halls lined with high school students (coaches for the day) cheering as the students arrive.<br />
Then everyone heads into the gym for all the fun.<br />
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This year, big brother Carter came for the fun.<br />
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Finish it off with a dance party and awards. Such fun, always fun.<br />
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<br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-25504728014605923682017-03-31T09:24:00.001-04:002017-04-02T08:00:20.358-04:00They Change You<span style="font-family: "georgia" , "times new roman" , serif;">Having children changes you.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;">
</span></span><span style="font-family: "georgia" , "times new roman" , serif;">Having a special needs child changes you, down to every fiber of your
being.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> We have two older boys, Carter and Luke. Brayden is our youngest. Yes having Carter and Luke changed us but then came Brayden and well...</span></span><br />
<div style="margin: 0px 0px 11px;">
<span style="margin: 0px;"></span><span style="font-family: "georgia" , "times new roman" , serif;">What does having a special needs, medically complex child do to you?</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">You have a child that is completely dependent
on you…literally you are responsible for keeping that child alive; whatever
their version of healthy may be, comfortable, feeling loved, etc. </span></div>
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "georgia" , "times new roman" , serif;">They change:</span></div>
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<ul>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you see life and death</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you handle life, in the little and big
things</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you participate in life and activities (or
don’t, which happens more often than not)</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you parent that child</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you parent your other children</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you love – a love that you never knew
existed, and the word love just does not seem to do it justice</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you hurt – and boy it can hurt</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you see the value and “quality” of life</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your family structure</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your marriage</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your identity</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your needs</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your emotions</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your faith</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">How you have friendships – you just don’t have
time or energy for anything but quality friendships</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your lifestyle</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your finances – how you spend money on your
home, vehicles, savings, insurance, medical items, etc.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your time</span></li>
<li><span style="font-family: Georgia;">Your priorities and how you make decisions</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your self-care and caring for others</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your coping skills</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Sleep</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Endurance – I call it the sleep over
effect.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">During the sleep-over (aka
medical crisis) you are on and ready to go.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;">
</span></span><span style="font-family: "georgia" , "times new roman" , serif;">Once the passes, whether it be hours or days or weeks, then you
crash.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">Like a child that had a sleep
over, totally up all night but crashes once home and sleepover is done.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your senses – I can hear the pump going off from
a mile away.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">Sniff out a feeding pump
spill or poo situation from another room.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your gut – sometimes you just know something is
not quite right, sometimes you know something will be alright, even to the
contrary (or doctors) and you have to trust that God-given “gut” feeling</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your vacations or lack there of</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your time management or ability to makes plans (making plans can just be laughable)</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your dependence on others (which some of us just
don’t like to do)</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your need for help</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your need for community and support because isolation
is very real and easy to slip in to </span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your ever expanding medical knowledge and
comfort level in all medical situations. And uncanny ability to recall any given medical fact about your child but cannot remember what you ate the day before</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your circle, which mostly involves doctors,
nurses, case managers, insurance companies, equipment companies, special-ed and
pharmacists.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">Because they are who you
interact with often.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Realizing you have very little control and thank goodness God's got this because it is too much for us to handle.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your flexibility in situations and absolute
stand-my-ground when fighting for your child</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Your voice. You learn to speak often and when
needed, especially when you have a child that cannot speak for themselves.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Hopes, dreams, goals, expectations that you had
for the child and perhaps your family.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">You
adjust.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Milestones - You learn to grieve certain things
but celebrate other things, new milestones</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">Embracing different hopes, joys and celebrations</span></li>
</ul>
<span style="font-family: "georgia" , "times new roman" , serif;">And all that, changes you for the better.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">It has changed you in ways that you did not
even know possible or expected.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><br />
<span style="font-family: "georgia";"></span><br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "georgia" , "times new roman" , serif;">Everything about your life, and your family, goes through
filter of caring for that child.</span><span style="margin: 0px;"><span style="font-family: "georgia" , "times new roman" , serif;"> </span></span><span style="font-family: "georgia" , "times new roman" , serif;">Your
child changes everything.</span></div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com1tag:blogger.com,1999:blog-2395370242575951913.post-68262311601478074052017-03-24T08:00:00.000-04:002017-03-31T09:13:18.642-04:00Where are we?Sorry all, Brayden is doing fine. I just needed a break from blogging but will be back to it very soon.<br />
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You can follow us on facebook for our day-to-day bits.<br />
https://www.facebook.com/carrie.l.jenkins.3Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com1tag:blogger.com,1999:blog-2395370242575951913.post-90919004601969225752016-09-16T09:37:00.002-04:002016-09-16T10:16:13.171-04:00Don't call it a comeback<i>He's been here for years, Rockin it with his peers</i>... Yes a little ode to LL Cool J.<br />
Yes we feel like we have almost been knocked out this past year (sorry I just can't let the song go. and to make you feel old; that song came out in 1991, released on a cassette).<br />
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We did feel like it was blow after blow for Brayden's health. And it seems like each year his health takes a hit; but he keeps on going. The doctor's give us those absolutely awful talks about the state of his health, and yes, I agree that on paper Brayden seems quite bad. And the talks that started this time last year took a very serious tone.<br />
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However, Brayden's keeps being himself. Even his last lab work looked good. Not just "good for Brayden" which is a phrase that is often used, but his labs actually looked good. Labs were better than I have seen in a long time. The ileostomy and his electrolytes seem to be managed. We have been dealing less with the poop out of his bum; a round a meds seemed to have helped.<br />
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Now that Brayden's ileostomy and bum situation seems under control (and I use that term loosely), we can concentrate on his bone health, comfort, etc. His body is tight, time of Botox. His spine is curving too much. And we are trying to catch up with his bone infusions.<br />
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Brayden's temperament and personality always seem to show that he is a rather grouchy old man, does not like change, does not like to do anything he does not want to do and he will let you know.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvO9FM7GZ8De4wwoG8-ESNfZKjqDsPcnCnvI7AIdzUd4WGPZvsn65XQ3ijHsPBeAaPGzD7vudurSXbVTmiWtuVcViIXinWlMLTqBaimIBCZQRpR29fDqmdDAAZHi5c7RS42XfTyCf0_5c/s1600/ips-7176AA03-C40D-4B25-8696-9813513810D8.mp4.mov" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>Look at his face in the video, he is ready to knock someone out. School music was not what he wanted at that moment.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLHWfhYZeZIxTquUdao-CL-EIRsOXdSFxrs8V5I6pWHV8oRHCVTUmlc0NP1KSNgnpIPJk2NOJOMYD4qZy2hd1vgKl-tTqa2zmQV32j4g5yxSOhTqeBXTbimOVngSMPJDbcsoe5HrpkGJk/s1600/ips-7176AA03-C40D-4B25-8696-9813513810D8.mp4.mov" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzRpT6eaRTAez0wUndM3CaD6ZHxndD_osnKc9HsZwGqwuw8CDAQns9gfY9h_mUG9cWQuHdEM9rFivHuFeUuOQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7SbQrvGM3FGyZ8-r1E6S8vDlxUZrNPIpOqLBQEhJt-w04l_XpgCI8rbWU5XEPmVwrRQULBVU6H0aiKBD_886aBGQTG95bPRZFDP8hDRGls9WANtdVk09uL4WJemXkelV6LUStu1Ifi5U/s1600/FullSizeRender+%252851%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7SbQrvGM3FGyZ8-r1E6S8vDlxUZrNPIpOqLBQEhJt-w04l_XpgCI8rbWU5XEPmVwrRQULBVU6H0aiKBD_886aBGQTG95bPRZFDP8hDRGls9WANtdVk09uL4WJemXkelV6LUStu1Ifi5U/s320/FullSizeRender+%252851%2529.jpg" width="240" /></a></div>
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He still loves to be outside and with his family, especially his brothers and daddy (minus Luke's trumpet solos). And his puppy and froggy. Loving country music and movies with music. Brayden is going to the same school he has attended since preschool. We are trying to get him there everyday but, well, we try our best.<br />
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God has given Brayden a big personality and given us more and more time to discover it. We are so thankful that Brayden has been stable or dare I say, healthy for being Brayden. Of course, he keeps us on our toes every day but it's not gonna knock this mama out. Don't call it a comeback, it's been this way for years. And we are thankful for each one.<br />
<br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com3tag:blogger.com,1999:blog-2395370242575951913.post-70654623959438501992016-09-03T10:04:00.004-04:002016-09-03T10:04:40.741-04:00Start of SchoolThis may have been the smoothest start to the school year, in many years. A bus came, actually on time, drove him to the correct school. I did not have to drive him, I did not follow the bus (although I did hang out in Leesburg for the day). Brayden was actually healthy enough to go to school.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipT8nKfekbkEfb4atgC5f3aI7ciJKb3SD4qoEG9G6SRL1maT2zeEmletViYiP23Id1PrIH-PsgKGxSgpl_RQdmOrKYOAWotyszfCEbMowfNWWyhSRWdhb9qcd0oqng01kEZGj1nQnieQ8/s1600/IMG_0968.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipT8nKfekbkEfb4atgC5f3aI7ciJKb3SD4qoEG9G6SRL1maT2zeEmletViYiP23Id1PrIH-PsgKGxSgpl_RQdmOrKYOAWotyszfCEbMowfNWWyhSRWdhb9qcd0oqng01kEZGj1nQnieQ8/s400/IMG_0968.JPG" width="266" /></a></div>
Brayden attended school Mon-Thurs. Same school, same room, same teacher and aids. He decided to put his game face on for school...the "don't talk to me" face.<br />
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<br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-14963423333227188602016-08-18T19:24:00.000-04:002016-08-18T19:24:16.407-04:00The Stinky Stinker<div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
Brayden stinks. In just about every way someone could stink (well, actually more than most).</div>
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<li><div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
Stool/mucus/who-knows-what is still coming out of his bottom. Several times a day. Sometimes it is a little and sometimes it is a lot. Whatever it is or size it is, it smells...really, really smells and we have a very high tolerance for smells in our house.</div>
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<li><div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
Brayden's ileostomy see<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrH2WUSL45Y5RtsMfdXIWhhsBFcPp3MUTONzpOttnA2Copjy-URp3kVx-jhXAWaelJUas0bvtAg-0FvtgCks8EdXuMkjlO3Iwfs10HPRtYBH-nN-WkbOK80mB3seUJOShoQ8zO3ehBrb0/s1600/FullSizeRender+%252848%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
ms to be doing ok, but because of every thing else going on we have to be a bit more specific with measuring the amount of stool coming out of his ileostomy. Nothing like measuring stool.</div>
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<li><div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
Urine output is fine, actually rather productive. We have been trying to compensate for things coming out of him everywhere else and giving him more water so that he would not become dehydrated.</div>
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<li><div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
Vomit, yes there has been vomit. While there is nothing for him to actually vomit since nothing goes into his stomach, he has been retching and vomiting. Is that because he is sick, GI troubles, fever/seizures, etc.?</div>
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<li><div style="color: black; font-family: arial,helvetica; font-size: 10pt;">
A fever. A fever that I thought <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrH2WUSL45Y5RtsMfdXIWhhsBFcPp3MUTONzpOttnA2Copjy-URp3kVx-jhXAWaelJUas0bvtAg-0FvtgCks8EdXuMkjlO3Iwfs10HPRtYBH-nN-WkbOK80mB3seUJOShoQ8zO3ehBrb0/s1600/FullSizeRender+%252848%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrH2WUSL45Y5RtsMfdXIWhhsBFcPp3MUTONzpOttnA2Copjy-URp3kVx-jhXAWaelJUas0bvtAg-0FvtgCks8EdXuMkjlO3Iwfs10HPRtYBH-nN-WkbOK80mB3seUJOShoQ8zO3ehBrb0/s400/FullSizeRender+%252848%2529.jpg" style="cursor: move;" width="400" /></a>was gone. He had a great Sunday and Monday, no sign of fever. In fact Carter, Luke and I took him to the movies. He absolutely loved the movie, sat in his wheelchair most of the time and then in my lap. So proud of him. I don't think he has ever lasted through an entire movie. Even Carter and Luke know to plan an exit strategy when Brayden acts up too much. But then on Tuesday the fever started creeping back. And hit 102.3, of course in the middle of the night. I was up with him, monitoring the fever, seizures and retching. It was not pretty.</div>
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I have been emailing the doctors updates and lots of pictures of Brayden's diaper goodies. The doctors have been emailing back and forth...seeming to take a scratching-their-head-method. Brayden had repeat labs done last Friday, everything seems ok. Some labs show inflammation but no infection or imbalance. </div>
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Whatever is happening, it is going on 3 weeks of it. One doctor (whom we adore and cannot parent Brayden without her) called in metronidazole (flagyl), to treat an possible infection in the colon. We shall see if that works, we picked up the med tonight.</div>
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And for a little poo humor, Brayden's nurse carried him over to the shower from his bed tonight. While traveling that short distance, Brayden's bum felt the need to shoot out stool/mucus/who-knows-what. Left a trail on the floor, rug...and the nurse. Again, not a large amount but the smell, oh the smell. Now the house smells like bleach.</div>
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Pray for our big stinker. One moment he seems fine and the next he is miserable. </div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-63755809060283712102016-08-10T18:12:00.000-04:002016-12-06T18:12:40.953-05:00Football Family
A letter that we sent to our local youth football league:<br />
<span style="color: black; font-family: "Arial",sans-serif; margin: 0px;"><br /></span>
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Football season is
upon us. It certainly seems like a great time of reflection on our year
and our football experience. Perhaps this sappy stuff comes as our oldest
enters his last year in youth football or as we, the Jenkins family, are finally
coming out of one hard year. This is just something we wanted to share.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It is more than
just football.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">That phrase was
certainly something I scoffed at when our family first started with Upper
Loudoun Youth Football League. I showed up to our first pre-season football
camp wondering what world we just signed up for. Come on people, it is just
football! My initial reaction to the youth football world was not,
well…let’s just say I was not thinking positive thoughts about it. The
intensity, the obsessiveness, the practices that cut our summer short, the
crazy parents, the crazy coaches, the crazy parents that thought they were
coaches and all of this was just about kids playing football?!</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Many years and many
seasons in to our youth football experience and I now find all of above quite
endearing and even perhaps some things I have come to appreciate.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Football makes our
world smaller. It provides community. It provides bonding not only for
the youth playing but the families as well.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We have seen
families form life-long friendships over youth football. Whether that be
cheering on the team or jeering at the coaches (and let’s be honest some have
really bonded over some sub-par coaching experiences) or just chatting at
practices and pre-game. The siblings look forward to seeing friends on
sidelines or in the stands, hours of playing (or getting goodies at the
concession stand). We have stood together in some scorching heat, hurricane
like rain and winter air that took our breath away. We have celebrated
some amazing wins and agonized over some very tough losses. None the less, real
friendships formed in all of those moments.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Even still, it is
so much more than what happens on the field, sidelines and in the stands.
What happens off the field is what makes it a community. We all have
walked along side of football families battling cancer or other major
illnesses, loss of loved ones, loss of jobs and so much more. Meals have
been made, fundraisers have been organized, Even if you did not know the
family, they are a part of our football company and we all support them; many
show up for them.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Our family
experienced this support first hand last year. A house fire, that left us
in a temporary home (for longer than we would like), without any of our
belongings other than what we had on vacation. Then our youngest son was
in and out of the ICU, to many tests, a big surgery and dreaded “talks” with
doctors. Where was our football community? They came to our
doorstep. Food was delivered, hugs were given, prayers said, laughs came
at the right times, help with the boys, rides given and so much more showed
up. We did not even have to ask. Help came right to us so we could
focus on the more important things. They helped keep things as normal as
possible for our two boys in football. The boys had time with teammates,
friends, going over to houses, treats given (oh that Slurpee after practice is
quite the treat). Our football community showed up as our community. We
will be forever grateful. And a side note that many of those burley
football coaches are actually quite good in the kitchen.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">As we were starting
to get back in to our house and we finally had a plan for our youngest son’s
health (not a plan we liked but some plan is better than no plan when battling
medical issues), another tragedy struck the Jenkins family. The loss of
my mother-in-law. It was a tragic, gut wrenching day. As the adults
in the Jenkins family were trying to sort through the events of the day, our
oldest still had a football game to play. While you might think it was
crazy for him to play (and I probably would have said the same thing years
ago), we could not think of a better place for him to be. He was
protected there, his heart was protected. I trembled as I drove him to
his pre-game warm-ups that evening. I pulled one of the coaches over, told him
in the vaguest way possible, that my husband was not going to coach that night
because of a family tragedy. That moment I saw the tough coach exterior
melt away and a Papa Bear came out to protect one of his own (and probably not
one that many would expect, given his rather gruff football coach persona), he
immediately went in to caring for and being protective over my football
players. My two oldest boys had their football family surround them that
night, just by keeping things normal. The following days were filled with
phones calls, emails and texts of love and support. More hugs given,
prayers and tears shed. You see, my mother-in-law rarely missed the boys’
football games, she was in the football community as well. Countless
people from our football community came to the offer their condolences, more
than we could have ever fathomed. They came to support our family.</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Football, it is so
much more than just football. Know that ULYFL has the platform to have
influence and impact on those in the football family. Football is a
community. </span></span><br />
<br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">“</span></span><span style="color: black; margin: 0px;"><a href="http://thinkexist.com/quotation/football_is_an_honest_game-it-s_true_to_life-it-s/148022.html"><span style="margin: 0px;"><span style="color: blue; font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Football is an honest
game. It's true to life. It's a game about sharing. Football is a team game. So
is life</span></span></a></span><span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">.” – Joe Namath</span></span><br />
<br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">And in case you
were wondering…</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I have become one
of those crazy parents. Screaming from the sidelines (yes from the sidelines
and not the bleachers, I can’t handle sitting during the games) to my boys “You
better hit someone!”</span></span><br />
<br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Sincerely,</span></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Carrie Jenkins</span></span><br />
<span style="color: black; margin: 0px;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">For the Jenkins
Family</span></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-48704811461609801362016-08-04T12:25:00.000-04:002016-08-04T12:26:03.884-04:00Poop in the Diaper<div style="margin: 0in 0in 8pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRXSlfXsJeUcG_2yd5bmuN4WYvrly7_Uts6057bowHpGC_QArDHGweOFjYWusZp5HUq7RJKsiUSKEIQaT1bGCtYAX-drcaf4NUzwczSI4o3i8-0qckO_L8_nwPKbnrPXW837VS7YZF2IY/s1600/FullSizeRender+%252847%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRXSlfXsJeUcG_2yd5bmuN4WYvrly7_Uts6057bowHpGC_QArDHGweOFjYWusZp5HUq7RJKsiUSKEIQaT1bGCtYAX-drcaf4NUzwczSI4o3i8-0qckO_L8_nwPKbnrPXW837VS7YZF2IY/s400/FullSizeRender+%252847%2529.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRXSlfXsJeUcG_2yd5bmuN4WYvrly7_Uts6057bowHpGC_QArDHGweOFjYWusZp5HUq7RJKsiUSKEIQaT1bGCtYAX-drcaf4NUzwczSI4o3i8-0qckO_L8_nwPKbnrPXW837VS7YZF2IY/s1600/FullSizeRender+%252847%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;">Brayden’s summer had been rather uneventful. He did attend summer school, Tues-Thurs for the mornings. Otherwise been at home and a couple of times in the pool. I try our best to ignore the doctors over the summer.</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Brayden had a different plan. Over the past week, Brayden had stool in his diaper. Yes, out-of-his-bum-poop. Poop should only be coming out of his ileostomy not his bum.</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Brayden had his ileostomy surgery in Nov, the plan at the time was to remove his colon. However, due to his instability at the time, the surgeon thought that the ileostomy and colon removal would just be too much. So Brayden only had the ileostomy done. We knew that Brayden’s colon still had stool in it (they were not able to flush it all out), we were told to expect the stool to come out at some point. But stool coming out of his bum 8 months later is not so good. Three times in the past week, Brayden had a very full diaper with actual poop, which has come along with low grade fever and the fever causes increase in seizures and gagging.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPyTZIIiRw_6NWEx-FRv10P0OsBEkreWQ1n5J_obxnqAC6LbQUl3c-DwUX26PONF4G8yk-wDiRvvnNcyR8sUYZo0mjq_TMPIeowXSxOIOdCTl5EUgCIdwTGab50_3lWhKoAFFjmE-Hgmo/s1600/FullSizeRender+%252846%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPyTZIIiRw_6NWEx-FRv10P0OsBEkreWQ1n5J_obxnqAC6LbQUl3c-DwUX26PONF4G8yk-wDiRvvnNcyR8sUYZo0mjq_TMPIeowXSxOIOdCTl5EUgCIdwTGab50_3lWhKoAFFjmE-Hgmo/s320/FullSizeRender+%252846%2529.jpg" width="276" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRXSlfXsJeUcG_2yd5bmuN4WYvrly7_Uts6057bowHpGC_QArDHGweOFjYWusZp5HUq7RJKsiUSKEIQaT1bGCtYAX-drcaf4NUzwczSI4o3i8-0qckO_L8_nwPKbnrPXW837VS7YZF2IY/s1600/FullSizeRender+%252847%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;">Talking with his GI doctor at Children’s (and his pediatrician), they wanted him at Children’s for x-rays and labs. So we packed up and headed in late Monday afternoon. Brayden, his Ms. Stephie and I spent afternoon and evening on the lovely 2</span><sup><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">nd</span></sup><span style="font-family: "arial" , "helvetica" , sans-serif;"> floor at Children’s, waiting for his turn for labs and x-rays (really waiting for them to find the orders for them). Then we waited for the results. The doctors wanted us to wait at the hospital in case more testing was needed or the possibility he would need to be admitted.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Surprisingly, the x-rays and labs came back “normal for Brayden”. Which is great news but the doctors are NOT at all comfortable with the stool and the amount of stool that we have seen (yes, I sent them pictures). We brought Brayden home on Monday night around 9:30 (he screamed from the moment we left the house until we got home and finally passed out asleep in his bed). The GI team wants to discuss things further, amongst themselves, but they don’t really seem to have any answers.</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Brayden will remain at home unless we see trouble with his ileostomy or an increase in the fever. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Something is not quite right with him, praying that this is just a little blip/oddity that has always been a part of Brayden’s medical story. </span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com1tag:blogger.com,1999:blog-2395370242575951913.post-71960767164537975342016-04-08T11:10:00.001-04:002016-04-08T11:10:17.576-04:00It is a Fierce LoveFierce:<br />
"having or displaying an intense or ferocious aggressiveness";<br />
"showing a heartfelt and powerful intensity"<br />
<br />
Love:<br />
"unselfish loyal and benevolent concern for the good of another"<br />
<br />
I was recently asked to describe what is means to be a mom to a special needs child, a child with significant medical needs. I have the privilege of being one and knowing others. We are all so different and our children's needs are different. Pausing to think about the one thing we have in common; without a doubt it is a fierce love for our children.<br />
<br />
A fierce love that powers us through so much; it has changed the fabric of our being. And we love our child with every fabric of our being. <br />
<br />
It is a love that is so aggressive and ferocious that gets right in. A love comes barging in when we first hear a diagnosis and/or a grim prognosis. We hear that we have a child that will struggle, daily, just to be in their own body. Oh that love digs deep down in. We learn that every day will be a battle. Over time, we realize that the battle is still present but it really becomes a privilege. This fierce love sinks it's teeth in deeper and deeper each day.<br />
<br />
This fierce love is more powerful than anything I could have imagined. I had no idea it would come with such extreme joy and grief, all because of your child. Your child. We have been knocked down to some very low lows but we get right back up, for our child.<br />
<br />
We have gone to battle for our child. Making medical decisions that we never thought would happen. Understanding those medical decisions, sometimes more than the doctors. But we still have to find a balance of how much medical intervention and their quality of life. One of our early decision came when with addressing seizures, how many seizures in a day can he handle or how snowed with medication will he be, are the seizures bothering him more than the medication, etc.? Now it has become, how many more surgeries, hospital stays, etc.? We battle with ourselves to make those decisions. Sometimes we battle with God, pleading for our child's comfort, asking why, when is enough, enough? That fierce love comes with some fierce responsibility and questions.<br />
<br />
Our definition of happiness and being content has changed. It changes the moment your child makes progress or, at least, is stable. You have new standards. It changes when they smile and when they need you. They need you for their survival, for their well being. As a result your parenting becomes the most unselfish, loyal and benevolent concern for another that you will ever know. One you did not even know you were capable of having.<br />
<br />
<a href="https://3.bp.blogspot.com/-dm8hGRTJeEE/VwfHfAWXzyI/AAAAAAAARG8/f1_Uflah74kxx1tf7_UZwCMjQScR8Snpg/s1600/FullSizeRender%2B%252843%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/-dm8hGRTJeEE/VwfHfAWXzyI/AAAAAAAARG8/f1_Uflah74kxx1tf7_UZwCMjQScR8Snpg/s320/FullSizeRender%2B%252843%2529.jpg" width="320" /></a>Over Easter weekend Brayden was not happy; fussy about everything. I just could not get him to settle down. We thought he might be tired or just all of the chaos of people around. I decided to put him to bed early. I was rolling him over in bed. He rolled his head right in to my shoulder and he stopped the crying. I scooped him up. He sat in my lap. I know I heard him give an audible sigh of relief. All he needed was his momma to hold him, to quiet his body, to provide comfort and finally peace. And I stopped everything else that night, just to hold him...for a few hours we sat there. His world need to be stilled so I had to still mine.<br />
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<a href="https://3.bp.blogspot.com/-dm8hGRTJeEE/VwfHfAWXzyI/AAAAAAAARG8/f1_Uflah74kxx1tf7_UZwCMjQScR8Snpg/s1600/FullSizeRender%2B%252843%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://3.bp.blogspot.com/-Jpx8zmya9jE/VwfHedfPnPI/AAAAAAAARG8/cL2e8EhwZPINxXYKWV9-atPw72LiM6_XA/s1600/FullSizeRender%2B%252844%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/-Jpx8zmya9jE/VwfHedfPnPI/AAAAAAAARG8/cL2e8EhwZPINxXYKWV9-atPw72LiM6_XA/s320/FullSizeRender%2B%252844%2529.jpg" width="320" /></a></div>
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This fierce love could be defined as a momma bear. We pull out the momma bear with insurance companies, schools, doctors, equipment companies. Fighting, protecting and providing for our child. But that fierce love come roaring up faster when someone has harsh words about our child. I will not share any words that have come our way because I do not want to even acknowledge them. But trust when I say that having a special needs child comes with all kinds of comments, criticism, unwelcomed "advice", etc. This fierce love had to make us stronger.<br />
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The powerful intensity of this love is almost terrifying. This child has changed us so much, changed our world, that we cannot fathom a world with out them in it. Their care, happiness and comfort consumes every part of our day and decision making.<br />
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We have had sleepless nights being up with our child at home or in the hospital. Or we even have sleepless nights worrying, thinking about them. Even our dreams (or nightmares) include them. We live at a constant level of stress. But to be without that stress would mean that we would be without them. Some have already lost their child, others are battling major medical issues, others are grateful to be in a "healthy" phase and we have learned to live day by day or sometimes even just moment to moment. This fierce love has taught us not to take one day or even sleepless night for granted.<br />
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I am forever grateful for this fierce love.<br />
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As I said, this fierce love has changed that fabric of our being. This list is what I pray becomes more and more of my character.<br />
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From Focus on the Family: Characteristics of a beautifully fierce woman<br />
<ul>
<li>She's filled with gratitude for God's good gifts. Her heart is ruled by the peace of contentment.</li>
<li>She's passionate about things that matter rather than living for the trivial.</li>
<li>She's willing to battle for a worthy cause rather than shrinking in defeat.</li>
<li>She protects and defends the helpless rather than using her strength to bully others. She is known as a sincere encourager.</li>
<li>She's honest but kind.</li>
<li>She walks in confidence and humility that flow from her recognition of Christ's work of grace in her life.</li>
<li>She has the power to influence and inspire because she lives under the Spirit's control.</li>
<li>Her identity and value are rooted in her relationship with Christ.</li>
</ul>
<br />Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com5tag:blogger.com,1999:blog-2395370242575951913.post-72948781778162426862016-03-09T09:04:00.002-05:002016-03-09T10:29:41.268-05:00Broken<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl0L7wvZwDa6Slk6_yeN8dqVXYOmN0hWkmYo-Wn0XEdAPz8qHgheuitGKWrFwgVxMPlNoawjl2K9heRyBuxsanEFm9mX9MxgcToQkujqBTgwwIp4M9N-obODksnaxeHM-bKMZOgbhU0Ug/s1600/FullSizeRender+%252838%2529.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl0L7wvZwDa6Slk6_yeN8dqVXYOmN0hWkmYo-Wn0XEdAPz8qHgheuitGKWrFwgVxMPlNoawjl2K9heRyBuxsanEFm9mX9MxgcToQkujqBTgwwIp4M9N-obODksnaxeHM-bKMZOgbhU0Ug/s200/FullSizeRender+%252838%2529.jpg" width="159" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">those naïve college days</td></tr>
</tbody></table>
<span style="font-family: "calibri";">I cannot tell you how many times I have used the word broken over the past nine months. I have never seen my husband so broken, in so many ways, throughout all of these circumstances. Broken in ways that has left me helpless as his wife. Then I realize that I have been broken too, in different ways. And of course, Jeremy wondering what in the world he could do to help me. Brokenness deep, deep in our being. How can we get it together when everything around is breaking down? By God’s grace, our marriage as gotten stronger.</span><br />
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<span style="font-family: "calibri";"></span>
<span style="font-family: "calibri";">I was reading an article recently about broke<span style="font-size: small;"></span>nness in m</span><span style="font-family: "calibri";">arriage. The statistics for marriages with special needs children are not on the positive side…then toss in a house fire, lost loved one, change in job, scary hospital stays and we have to actually parent our children throughout it too.</span><br />
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<span style="font-family: "calibri";">This song recently popped up in a feed and I listened to it again. I think it speaks volumes about marriage. We are both broken and the whole idea about making each other complete...that is rubbish. We are all so broken, how could we really complete each other? Isn't that an incredibly unrealistic expecta<i></i><i></i><span style="font-family: "verdana" , sans-serif;"></span>tion and unfair to put that on our spouse?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl0L7wvZwDa6Slk6_yeN8dqVXYOmN0hWkmYo-Wn0XEdAPz8qHgheuitGKWrFwgVxMPlNoawjl2K9heRyBuxsanEFm9mX9MxgcToQkujqBTgwwIp4M9N-obODksnaxeHM-bKMZOgbhU0Ug/s1600/FullSizeRender+%252838%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span lang="EN" style="font-family: "trebuchet ms" , sans-serif; font-size: 10.0pt;"><i>Maybe you and I were never meant to be complete<br />
Could we just be broken together</i><i><br />
If you can bring your shattered dreams and I'll bring mine<br />
Could healing still be spoken and save us<br />
The only way we'll last forever is broken together</i></span></div>
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<span style="font-family: "calibri";">"Two people are better off than one, for they can help each other succeed.</span></div>
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<span style="font-family: "calibri";">If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.</span></div>
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<span style="font-family: "calibri";">Likewise, two people lying close together can keep each other warm. But how can one be warm alone?</span></div>
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<span style="font-family: "calibri";">A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken." – NLT Ecclesiastes 4:9-12</span><br />
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<span style="font-family: "calibri";">That triple-braided cord - who is the third? Christ.</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Jenkinshttp://www.blogger.com/profile/15555534020752164137noreply@blogger.com0tag:blogger.com,1999:blog-2395370242575951913.post-73609746282700242862016-03-08T23:00:00.000-05:002016-03-09T15:21:58.800-05:00It's a Jenkins ThingA family business. We try to get all of the family involved, no excuses. - <a href="http://www.jenkinsenterprisesllc.com/">Jenkins Enterprises</a><br />
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