tag:blogger.com,1999:blog-89898300418247161402024-03-13T20:44:47.652-07:00Parker's Purple Playa Power..Pounding at Juvenile Rheumatoid ArthritisParents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.comBlogger124125tag:blogger.com,1999:blog-8989830041824716140.post-68684109872652886642019-07-28T09:17:00.001-07:002019-07-28T09:46:01.786-07:00Parker’s Medical Marathon<!--[if gte mso 9]><xml>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #222222;">As we started our week,
Parker and I began to joke that we were ready to take on “Parker’s Medical
Marathon”….He had 7 medical appointments at Shands UF Health.</span><span style="color: #222222;"> </span><span style="color: #222222;">Last week was totally exhausting with some
good news and some not so good news. We are processing everything and
Parker has a lot more appointments in the future. The glorious news is
there is no tethering on his spinal cord; so there's no urgent surgery needed,
and he can go to the JA Conference. </span><span style="color: #222222;"> </span><span style="color: #222222;">We
really needed this small miracle.</span><span style="color: #222222;"> </span><span style="color: #222222;">He
does have some spinal damage (35% curvature with scoliosis), swelling with
ligaments/tendons, and herniation in thoracic spine (that was a surprise
because he has pain in lower spine and neck, not this area). </span></span></div>
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<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Next steps, we must deal
with his scoliosis, the numbness in his limbs, his disfunctioning bladder and
his bowel issues (pain in left quadrant and a bit of again). All these
issue could be related. So the docs collectively feel we need to see the
head of pediatric orthopedics, since she is a scoliosis specialist and
scoliosis is a pediatric issue. We have also been referred to neurology
and they will team together to try and figure things out. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">In addition, we have
scheduled a colonoscopy to see if Parker's motility issues have progressed and
to hopefully figure out the source of the lower left belly pain. There are also
issues with his bladder/urine...but still need more info.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Rheumatology was an
intense visit. His biggest complaints are his neck and shoulders.<span style="mso-spacerun: yes;"> </span>He is going to try massage therapy in this
area.<span style="mso-spacerun: yes;"> </span>His newest biologic shot doesn't
seem to be working. We are giving it 2 more months, but then she doesn't
know what to put him on because he has exhausted all the biologics, except one
(and not so sure that it will work with what is going on). They also
scheduled an ultrasound of multiple joints. When scanning his left ankle
and foot, there was a gasp...it does not look normal at all and bones could be
crumbling; and there is something else going on because it looks like there is
blood flow on the ultrasound where blood flow shouldn't be happening. This
could indicate inflammation.<span style="mso-spacerun: yes;"> </span>So, now we
are scheduling an MRI of that foot and ankle, too. And then, we
discovered his papilledema (swelling behind eyes) is back. I cannot even
begin to tell you how my heart sank in that moment.<span style="mso-spacerun: yes;"> </span>His vision is blacking out again with change
is positions. So we go back to neuro-ophthalmology at Bascom Palmer.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">His tibia breaks are
healing but not fully healed yet. He is pretty ticked off that the doc is
making him use the wheelchair at conference, to get to and from locations, but
then he can get up and walk, no more than 1,000 steps this week and then 2,000
next. Each week he can add 1,000, until he hits 5,000, when we go back to
doc. He will start PT in 2 weeks.<span style="mso-spacerun: yes;">
</span>He is excited about getting back to PT and hopefully ditching the
wheelchair.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "arial" , "helvetica" , sans-serif;">We are all trying hard to
focus on the good...that his spinal cord is ok...but Parker and I are really
exhausted and feel so defeated with all the other news.<span style="mso-spacerun: yes;"> </span>We know that Parker’s Medical Marathon is not
done and we are pacing ourselves.<span style="mso-spacerun: yes;"> </span>I
guess this is why they call it “chronic illness”.<span style="mso-spacerun: yes;"> </span>This morning I saw a quote that spoke to
me…”The only impossible journey is the one you never begin.”<span style="mso-spacerun: yes;"> </span>This journey has been really difficult this
summer. Although the path is not one we would have chosen, we are hopeful it is
taking us where we need to go.</span><span style="font-family: "arial";"><o:p></o:p></span></span></div>
<!--EndFragment--><br />Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com2tag:blogger.com,1999:blog-8989830041824716140.post-57399347559452522402018-12-18T12:46:00.000-08:002018-12-18T12:46:16.059-08:00OUR Purple Playas Foundation is Up and Running!<span style="font-family: "arial" , "helvetica" , sans-serif;">For our "non-Facebook friends", we are so very excited to announce that our family has started a non-profit: Purple Playas Foundation! And we have a website! Wahoo! Go check it out at: <a href="https://purpleplayasfoundation.org/" target="_blank">https://purpleplayasfoundation.org/</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><br /></span>
<br />
<div class="page" title="Page 1">
<div class="layoutArea">
<div class="column">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">The mission of the Purple Playas is to provide support and resources in the area of pediatric chronic illness and to gift smiles to children and their families.
</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Our 3 Goals:</span><br />
<br />
<ol>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Provide social-emotional resources and
information on coping with medical trauma
to support families and children impacted by
chronic illness. </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Provide funding and resources to providers/families of children with chronic illness to bring
smiles to children’s faces. For example: funding to
camps that support children with chronic/complex
illness, food/gas cards to get to treatment, gaming
systems for hospitals, durable/medical equipment
not funded by another means, family fun days to
connect families, etc. </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Support fellowships/scholarships in high need
pediatric care with a critical shortage, beginning
with pediatric rheumatology. </span></li>
</ol>
<br />
<ol>
</ol>
</div>
</div>
</div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We also have our first fundraising event scheduled for March 29 and 30, 2019! We are hosting our very first annual Purple Playas Charity Golf Tournament,
preceded by a “Pairings Party”. Our Pairings Party is sure to be loads of fun with our engaging host,
yummy appetizers, and auction items. And we will auction-off some local celebrities to the highest
bidders to join your golf teams the next day. Tickets to the Pairings Party are $25 and anyone is welcome. And if you are interested in attending, golfing, sponsoring, and/or donating for our auction, please contact us on our website and we would be happy to send you the information.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">You can also visit us on Facebook or Pinterest. Just search Purple Playas Foundation and we will pop up with our logo. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiErOM9WuBejF1bDrIDIgmZHdM4VAt9WcBuejGRGD8DVA7kk4qMYF7UpjfjtdJH5ztiJQlLyfhL52Mp_Pkwi60pr1mqxo2z3hTh9v6eCCakyptzPFFTNLCsKhR40f1NQLKra0ctNSEsF-4W/s1600/PPF_logo_H_color.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="499" data-original-width="1600" height="99" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiErOM9WuBejF1bDrIDIgmZHdM4VAt9WcBuejGRGD8DVA7kk4qMYF7UpjfjtdJH5ztiJQlLyfhL52Mp_Pkwi60pr1mqxo2z3hTh9v6eCCakyptzPFFTNLCsKhR40f1NQLKra0ctNSEsF-4W/s320/PPF_logo_H_color.png" width="320" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-69673776015500912752018-08-22T18:31:00.001-07:002018-08-22T18:31:20.696-07:00A Video Update from Parker...day 3 post op<div style="text-align: center;">
<span style="font-size: large;">Oh what a difference this afternoon...Parker is quite happy with his progress and you can see the joy on his face in this video. We are so happy for him.</span></div>
<div style="text-align: center;">
<a href="https://www.facebook.com/rochelle.lentini/videos/vb.100000672003472/2069472856418428/?type=2&video_source=user_video_tab"><span style="font-size: large;">Click here to see and hear from Parker</span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://www.facebook.com/rochelle.lentini/videos/vb.100000672003472/2069472856418428/?type=2&video_source=user_video_tab"><span style="font-size: large;"><br /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_OQP5XX8sXLhiNm1kT6JVJWbokkT7_MWYkLSXn3bf714gM9uwPBip9b6Rn7eU21mXpnc6FGHGpvCGKV8QxHD_rs3ASnPHvJzriMZH2YJUw4QMXYcbd4L_aCLWoQnxssUQEx824_3ZgnE0/s1600/FB_IMG_1528800559236.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="328" data-original-width="236" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_OQP5XX8sXLhiNm1kT6JVJWbokkT7_MWYkLSXn3bf714gM9uwPBip9b6Rn7eU21mXpnc6FGHGpvCGKV8QxHD_rs3ASnPHvJzriMZH2YJUw4QMXYcbd4L_aCLWoQnxssUQEx824_3ZgnE0/s320/FB_IMG_1528800559236.jpg" width="230" /></a></span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com2tag:blogger.com,1999:blog-8989830041824716140.post-27458194827911955952018-08-21T08:53:00.004-07:002018-08-21T15:42:44.033-07:00Loose Screw and Stronger Than Titanium<!--[if gte mso 9]><xml>
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<!--StartFragment-->
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<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">First off, Parker is doing great, especially considering the
major surgery he just endured.<span style="mso-spacerun: yes;"> </span>We can’t
even begin to tell you how proud we are of his “stronger than titanium
strength”, his patience with the “unexpected”, and his resilience.<span style="mso-spacerun: yes;"> </span>I am marveling at his growth since this time
last year, when he only had one foot repaired.<span style="mso-spacerun: yes;">
</span>There have been some frustrations that normally would have had him
ranting, but he really has kept his cool and been polite regardless and he cried/complained when we were alone in the room.<span style="mso-spacerun: yes;"> </span>This is huge, considering how little control
he has over things right now.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Secondly, he is on the floor he adores, with the nurses he
loves and who know him well.<span style="mso-spacerun: yes;"> </span>That is a
huge blessing since they were going to try and put him on an adult floor,
because you know our kiddo is a man-child now.<span style="mso-spacerun: yes;">
</span>Being on this floor gives him some predictability and the staff has
amazing kindness and love.<span style="mso-spacerun: yes;"> </span>The nurses
are incredibly special to him because they care so much.<span style="mso-spacerun: yes;"> </span>Plus they have watched him grow over the
years.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Now for what HAD to be done…The left foot went as expected
and even a little better than expected.<span style="mso-spacerun: yes;">
</span>The surgeon was able to get the entire broken screw out of his foot
without damage.<span style="mso-spacerun: yes;"> </span>That was huge, because
he really thought he would have to leave the back half of the screw in.<span style="mso-spacerun: yes;"> </span>He used the bone harvested from Parker’s hip
to repair the left subtalar fusion and added a new titanium screw.<span style="mso-spacerun: yes;"> </span>Then, he went into the right foot and
unfortunately there was a screw loose in addition to the cadaver bone
failing.<span style="mso-spacerun: yes;"> </span>So the loose screw was pulled
out and he reinforced the bone with the harvested hip bone and put in a smaller
screw to fuse the foot again.<span style="mso-spacerun: yes;"> </span>The left
foot/ankle is casted and the right foot is splinted.<span style="mso-spacerun: yes;"> </span>Both feet/legs are numb from the epidural,
which is awesome.<span style="mso-spacerun: yes;"> </span>The left hip is
screaming at him. They are working on controlling that pain with oral meds, so he
can work on movement in the hip to get ready to start practicing transferring
from the bed to his wheelchair without using his feet.<span style="mso-spacerun: yes;"> </span>Most of that hard work will start on Thursday
when the epidural is removed.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">In the meantime, he will get SI joint injections. <span style="mso-spacerun: yes;"> </span>Also, the nephrologist just called to share
that the results of his 24 hours urine study didn’t show improvement and that
she wants a med increased and has requested an ultrasound for another possible
kidney stone.<span style="mso-spacerun: yes;"> </span>I guess we are in the
right place … so that is being added to the protocol for today or
tomorrow.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">In addition, his lungs have been a little mean.<span style="mso-spacerun: yes;"> </span>He has needed to use a rescue inhaler and do
some lung exercises.<span style="mso-spacerun: yes;"> </span>He has worked like
a champ all morning and is now resting…didn’t get much sleep last night.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh67hf8G4ZPW_AiG9HNNFhAieAXP-Uqf3NUM02bbTdj37IAqkzSoJxUrnX9mRneiVgafEnLnZr9JNfz7mLCkuugorOlporUatOHES5N9p5bmYyfe5ECJQhDA466dgwvGZoPleU1D93u2C5v/s1600/20180820_203718.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh67hf8G4ZPW_AiG9HNNFhAieAXP-Uqf3NUM02bbTdj37IAqkzSoJxUrnX9mRneiVgafEnLnZr9JNfz7mLCkuugorOlporUatOHES5N9p5bmYyfe5ECJQhDA466dgwvGZoPleU1D93u2C5v/s320/20180820_203718.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">We are pleased with his progress thus far.<span style="mso-spacerun: yes;"> </span>He is in good spirits and loved having his
brother drive into town last night to see him.<span style="mso-spacerun: yes;">
</span>Once again, we thank all of you for your never-ending support.<span style="mso-spacerun: yes;"> </span>Our family is most blessed to have such good
people in our lives.<span style="mso-spacerun: yes;"> </span>We love you all.</span><o:p></o:p></div>
<!--EndFragment--><br />
<br />Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com12tag:blogger.com,1999:blog-8989830041824716140.post-56063893464528498412018-08-18T16:28:00.001-07:002018-08-18T16:28:12.672-07:00Surgery…Again!
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<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Parker asked me to update
everyone on the craziness with his feet.
If you follow us on Facebook, you already know that he has bilateral
foot surgery scheduled for Monday at our local pediatric hospital. If this feels like <span style="background: white; color: #222222;">déjà vu…well, it feels like that for us too. This is the 4<sup>th</sup> time Parker is
going under for his feet/ankles and for a total of 6 surgical procedures. His disease is making things way more
difficult because his body is seeing the cadaver bones as foreign objects and
rejecting them. Then they disintegrate
and get reabsorbed back into his body leaving an open space where bone should
be. We have just decided that his body
doesn’t like “dead people”. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">So here is what is happening:<span style="mso-spacerun: yes;"> </span>the cadaver bone in his left foot is
completely gone and the open space must have created such a torque in his step
that it snapped one of the 3 screws in that foot right in half. <span style="mso-spacerun: yes;"> </span>Yes, he is stronger than titanium.<span style="mso-spacerun: yes;"> <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/AVvXsEjW7TVnEbywwy-AmMiww2nQOzxbLjXR69-Snh5Tpd2deOY7eysRZEyfK3OLk2gXQ7lAO-jevA4TR8c21PhEz_bssg7w6_oAd9iW3Gnh-VlAMToMorqyc-zrkMsvr-JoOFN0gACWxKHb4y9A/s1600/Broken+lft+screw.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW7TVnEbywwy-AmMiww2nQOzxbLjXR69-Snh5Tpd2deOY7eysRZEyfK3OLk2gXQ7lAO-jevA4TR8c21PhEz_bssg7w6_oAd9iW3Gnh-VlAMToMorqyc-zrkMsvr-JoOFN0gACWxKHb4y9A/s400/Broken+lft+screw.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Broken titanium screw</td></tr>
</tbody></table>
</span><br />So, the surgeon is going to try and remove
the broken screw, but he may have to leave the back half in, if the bone around
it is too brittle.<span style="mso-spacerun: yes;"> </span>In addition, the
right foot’s cadaver bone is hanging on by one corner and is very lacey. The
doctor is going to replace both of the cadaver bones with bone harvested from
the crest of his own hipbone.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><span style="background: white; color: #222222;">He is expected to be in the hospital for a week
and while he is in-patient, he will also get injections of cortisone in his SI
joints.<span style="mso-spacerun: yes;"> </span>These joints have gotten
progressively worse. So, this should help not only his joints and lower back
but also some of the pain that will come with being bed-bound for a while.<span style="mso-spacerun: yes;"> </span>He will be non-weight bearing on both feet;
and we know that recovery will be at least 3 months before he can walk
again.<span style="mso-spacerun: yes;"> </span>One plus, is he has gone through
this before; so he knows pretty much what to expect…one negative is, he has
gone through this before and knows what to expect…<span style="mso-spacerun: yes;"> </span></span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Please keep our kiddo in
your thoughts and prayers.<span style="mso-spacerun: yes;"> </span>Much love to
each of you.<o:p></o:p></span></div>
<!--EndFragment--><br />Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com6tag:blogger.com,1999:blog-8989830041824716140.post-6259252154600164492018-03-21T12:43:00.002-07:002018-03-21T12:54:26.357-07:0010 Years of HOPE<span style="font-family: "arial" , sans-serif; font-size: 12pt;">While
reflecting on the last 10 years, our family has learned so many valuable
lessons:</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Our
worries, revealed faith… <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Endless
treatments, needle sticks, and procedures brought us solutions… <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Ongoing
pain, showed us even greater strength… <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Unsolved
mysteries, taught us patience… <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Physical
barriers and road blocks guided us to alternate paths…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Funding
brought us research and closer to a cure… <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Loss
filled us with a never ending drive to battle on…<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">But
the greatest lesson of all is LOVE.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">We are
grateful to each of you who have loved us along the way;<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-indent: .5in;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">…
and we are grateful that together we have never lost HOPE.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Our strong, incredible, forever hopeful kiddo has endured way
too much these past 10 years.<span style="mso-spacerun: yes;"> </span>His
journey began in elementary school.<span style="mso-spacerun: yes;"> </span>Kids
should just enjoy being kids.<span style="mso-spacerun: yes;"> </span>We will do
all we can to bring JOY to children and their families by helping to not only
fund a future cure, but also camp, family fun days, and conference for kids who
are living in the here and now.<span style="mso-spacerun: yes;"> </span>This is
why we still ask for support year after year after year.<span style="mso-spacerun: yes;"> </span>Because until there is <u>no need</u> to ask,
<b style="mso-bidi-font-weight: normal;">we will</b>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Please take a moment to scroll through Parker’s 10 year
medical journey.<span style="mso-spacerun: yes;"> </span>By no means has his
life only been filled with these hardships, it’s only a piece of him.<span style="mso-spacerun: yes;"> </span>He is so much more than this horrible
disease.<span style="mso-spacerun: yes;"> </span>I just encourage you to take a
moment and pause and let this list sink in.<span style="mso-spacerun: yes;">
</span>He is not the only child enduring Juvenile Arthritis; he is one of
300,000 children.<span style="mso-spacerun: yes;"> </span>What if this was your daughter,
son, niece, nephew, or grand child?<span style="mso-spacerun: yes;">
</span>Wouldn’t you do whatever you could?<span style="mso-spacerun: yes;">
</span>I shamelessly ask for your continued support…walk with us, pray with us,
and if you can…donate with us.<span style="mso-spacerun: yes;"> </span>Details
are at this link:<span style="mso-spacerun: yes;"> </span><a href="https://events.arthritis.org/participant/Parker-Lentini">https://events.arthritis.org/participant/Parker-Lentini</a><o:p></o:p></span></div>
<div class="MsoNormal">
<i style="font-family: arial, sans-serif; font-size: 12pt;"><br /></i>
<i style="font-family: arial, sans-serif;"><span style="font-size: large;">Could you imagine enduring all this for 10 years?</span></i></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">First year of symptoms, doctors ruled out:<span style="mso-spacerun: yes;"> </span>Lymphoma, Leukemia, fibromyalgia, MS<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It took 1 year 7 months to get a diagnosis;
another 6 months later to receive the correct diagnosis of systemic on-set
juvenile arthritis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">His many symptoms:<span style="mso-spacerun: yes;"> </span>intense pain, high fevers, roaming rash,
paleness, extreme fatigue, falling down, difficulty walking, peeling fingers
and toes, bruising, rough skin on face; swelling; and the pink finger tips <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">All joints in entire body affected (Did you
know there are joints even in the ribcage?)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">First year, Doc told him no contact sports,
skim boarding, jumping, or skate boarding<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Multiple organs affected:<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">heart<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">lungs/bronchioles<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">lymph nodes<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">brain<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">eyes<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">vascular system<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">adrenal system<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">skin<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">kidneys<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">GI tract <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Multiple overlapping syndromes/medical issues:<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">allergies<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">asthma<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">raynauds<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">myositis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">vasculitis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">osteoporosis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">hypogammaglobulinemia (immune deficiency)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">brain pseudo tumor<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">papilledema (pressure/swelling on optic nerve)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">psoriasis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">anklyosis spondylitis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">interstitial lung disease (pulmonary obstruction
and restriction)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">adrenal insufficiency/crisis<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">kidney stones<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">autonomic dysfunction<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">possible crohns<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">alopecia<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">cushings<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">4 rounds of pericardial effusion<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">pluersy<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">on the verge of MAS twice (life threatening)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">18 medical specialists all throughout the state
(up to 4.5 hours away)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">2.5 years into journey, another lymphoma scare<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">2011 began pain meds<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Many Meds (anywhere from 18 to 32 meds at any
one time)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Shots tried:<span style="mso-spacerun: yes;">
</span>Enbrel, humira, ilaris, stelara, cosentyx <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Countless infusion room visits for treatments
of IVs: Remicaide, actemra, kineret, rilonacept, simponi, rituxan (wipes out
all B-cells), Reclast<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">7 years of IVIG (blood plasma to boost
immunoglobulins to help fight infections)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">4.5 years weekly chemo shots with anti-nausea
meds<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Growth and hormone therapy<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Anti-organ rejection med<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">5 years straight of prednisone (steroid) with
major weight gain<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">9 years of compounded meds due to allergies,
with a high cost<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Took place in a clinical trial:<span style="mso-spacerun: yes;"> </span>RAPPORT Study<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Surgeries:<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">4 reconstructive surgeries<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">sub-clavicle port (permanent IV access over
heart)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">cystoscopy (remove bladder blood clot)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">kidney stone blasting and stent<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">5 spinal taps<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">about 15 nerve ablations<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">3 Endoscopies, 5 colonoscopies<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">6 teeth extractions<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Many many ER visits<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">So very many hospital stays, some in PICU<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Many talks of dying and going to heaven to
escape the pain<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Altered school schedule, charter school, shortened
school hours, hospital homebound, virtual school, and now on track to get
GED…there really wasn’t a “place” for a kiddo with intermittent attendance and
severe/complex health issues.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Special equipment:<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">mouth splint for jaw<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">shoe inserts<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">ankle/foot orthodics<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">knee scooter<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">wheelchair<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">walker<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">hand splints<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">shower chair<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">therapy ball for seating<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">built-up spoon/toothbrush/pencils<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">night leg splints<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">wrist splints<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">blood pressure cuff<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">bi-pap machine<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">nebulizer<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">home IV pump/poll<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">storage and mini frig for all the meds and
supplies<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Medical Treatments:<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">2 rounds of occupational therapy (OT)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Ongoing rounds of physical therapy (PT)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Aqua therapy<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Biofeedback<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Acupuncture<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Counseling<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Multiple tests/scans:<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Xrays<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Blood labs…so many blood labs<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">CT scans<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">MRIs, MREs, MRAs<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">hidascan<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">dexascans<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">pulmonary function box tests<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">field of vision tests<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">6 sleep studies<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">ultra sounds<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">EKGs<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "courier new"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">EEGs<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Bullying, non-educated adult humiliation<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Insurance denials, appeals, overrides, case
manager<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 12.0pt; line-height: 107%;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Children/friends have died<o:p></o:p></span></div>
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</span></span></span><!--[endif]--><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Make-a-Wish recipient<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">With every birthday candle blown-out, cake cutting,
shooting star, fallen eye lash, coin thrown into a well, 11:11, and dandelion
blown….the wish is always full of HOPE:<span style="mso-spacerun: yes;">
</span>We wish for no more JA pain and a cure for all children!<span style="mso-spacerun: yes;"> </span>If you can, please join us for the Walk to
Cure Arthritis on May 12.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Again, details
are at this link:<span style="mso-spacerun: yes;"> </span></span><a href="https://events.arthritis.org/participant/Parker-Lentini"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">https://events.arthritis.org/participant/Parker-Lentini</span></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">We thank you for supporting us, crying with us, laughing
with us, and loving us!<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The Lentini Family <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzcBMBj-RuCFJS5jbq7Xf2V0jbHVvrHMy7sWVwMmVbIHQ3rKdaxLoBxAUdd3UOIjEJXwHSLtOzVXCLcxI3Gey7jvg9g2hd_S0vL3MNA0f6Nj-gOUKJsSAyqNLaRhJHzVQkAAbbFOkFWRiZ/s1600/quote.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="452" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzcBMBj-RuCFJS5jbq7Xf2V0jbHVvrHMy7sWVwMmVbIHQ3rKdaxLoBxAUdd3UOIjEJXwHSLtOzVXCLcxI3Gey7jvg9g2hd_S0vL3MNA0f6Nj-gOUKJsSAyqNLaRhJHzVQkAAbbFOkFWRiZ/s640/quote.jpg" width="400" /></a></div>
<br />Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com5tag:blogger.com,1999:blog-8989830041824716140.post-55140509338998497152018-03-14T12:25:00.004-07:002018-03-14T14:16:45.356-07:001 Step Forward, 2 Steps Back...By Parker<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Have you ever heard of the saying “1 step forward, 2 steps
back?” </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Well, never before has that saying felt more true about my life than now. </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDPQzOb30ByKHW7Nki9ygDfOyXk4zMl6bkrsJwSntW-3fS5kfHKefuXpDdaFt0w4AEe2yR42MZcS-7XWOzBE04vSTJ5abV2LaGIWymoBfGnv_RQh8Z9DQqQJXzu88bZiSAv_AIjPYk84wd/s1600/footOrthodics.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="576" data-original-width="1024" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDPQzOb30ByKHW7Nki9ygDfOyXk4zMl6bkrsJwSntW-3fS5kfHKefuXpDdaFt0w4AEe2yR42MZcS-7XWOzBE04vSTJ5abV2LaGIWymoBfGnv_RQh8Z9DQqQJXzu88bZiSAv_AIjPYk84wd/s640/footOrthodics.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All the "steps" taken to correct my feet/ankles over the last 8 years.<br />
Bottom row is before surgeries Top row is after surgeries.</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">As most of you know, I had my 4th ankle surgery this past August. They put 2
screws in and did a subtalar fusion of my foot and ankle. Earlier this year I
finished doing physical therapy (PT) on it and for the first time in 5 years I
haven’t had to use my wheelchair. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZ4T3twypirs_Hw49jXNF6LJKN7rKivBVEnmWd92X23YHwzkXg9YU6ABWg3zVN8XsS1kU3SDUKLwQ_wO_wLULQTHrhDfJFuV7FT36RQVsVZ3pHHMgsWSgEc4ehvT0zzsEAI87HtGy9Pp6/s1600/RtTopScrews..JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZ4T3twypirs_Hw49jXNF6LJKN7rKivBVEnmWd92X23YHwzkXg9YU6ABWg3zVN8XsS1kU3SDUKLwQ_wO_wLULQTHrhDfJFuV7FT36RQVsVZ3pHHMgsWSgEc4ehvT0zzsEAI87HtGy9Pp6/s320/RtTopScrews..JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Top right foot with 2 screws.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi02PB68P0x6vQxp11Q3gHsTf4i6WiiHgpdSJn0F3aHsSvUiU9CrTdVv78vd_8X53dxXW9rbD-sVwce3bv_dyedERkPqAde-rS23CP3kJhQl2kS7025ubOAVbIbhxgeJ73uoJg3dRD4eXqn/s1600/SideRightScrews.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi02PB68P0x6vQxp11Q3gHsTf4i6WiiHgpdSJn0F3aHsSvUiU9CrTdVv78vd_8X53dxXW9rbD-sVwce3bv_dyedERkPqAde-rS23CP3kJhQl2kS7025ubOAVbIbhxgeJ73uoJg3dRD4eXqn/s320/SideRightScrews.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Side right foot with 2 screws.</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Since that surgery I have only used my wheel
chair for Disney trips; and I have been walking an average of 3,000 steps a
day. This might not seem like a lot, but compared to before the surgery where I
was walking less than 1,000 steps a day, it’s a big improvement. But that is
just the beginning, for the past month I have been walking much more than that.
At physical therapy I have been training my endurance and stamina by walking on
the treadmill for 6-8 minutes at 2mph (Ludacris speed). And I do that up to 3
times in the hour that I am at PT. The main reason that I have been doing this
is so that I would be able to walk the full mile at the Walk to Cure Arthritis
this year, in under 30 min. And it was really looking like I was going to be
able to meet this goal. Until yesterday.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Yesterday I went to see my surgeon because for the past
month or so I have been feeling a bit of a sharp pain in my ankle when I walk
too much. Now normally this wouldn’t concern me because I would just assume
that it is some kind of arthritis pain, but ever since I got the same surgery
on my other ankle I haven’t felt any pain like this. So, we decided to go see
the surgeon and get X-rays. And this is where we started taking steps
backwards. The surgeon came in with the X-rays and showed me where the screw is
and explained to me that my foot never fused all the way and because of that
the screw has become loose. And because the screw has become loose, whenever I
walk the top of the screw is being pinched. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKUEvWplutLgvX8Rb44lVWKkCIA3XpQW7LQrRUXf7aVhD-LF56B0_O1XtCWk-K759tMoQMJdX_ONMcxUs7haQWoXA4LFHXQbWSKK_CbuFow6-SjYD-ReTb_qOPHUZsp1ao_rvvVn4oLu7p/s1600/LooseScrew.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="928" data-original-width="1144" height="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKUEvWplutLgvX8Rb44lVWKkCIA3XpQW7LQrRUXf7aVhD-LF56B0_O1XtCWk-K759tMoQMJdX_ONMcxUs7haQWoXA4LFHXQbWSKK_CbuFow6-SjYD-ReTb_qOPHUZsp1ao_rvvVn4oLu7p/s320/LooseScrew.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Notice back space around screw.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu4BMKzJbQO7apCMVQKEMM3i4arOgNc8dGR4zJbylsAzFhg9Wd11Ih4_RI6IeTvfyUMrD40gHQmBzqnhvoMqAWR1hPi7LrAKpL6lfoWc42eMXhMxyIDcnoAXtN9pQ0hYKxVZXKtFHmpLjj/s1600/PinchedScrew.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="948" data-original-width="792" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu4BMKzJbQO7apCMVQKEMM3i4arOgNc8dGR4zJbylsAzFhg9Wd11Ih4_RI6IeTvfyUMrD40gHQmBzqnhvoMqAWR1hPi7LrAKpL6lfoWc42eMXhMxyIDcnoAXtN9pQ0hYKxVZXKtFHmpLjj/s320/PinchedScrew.png" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Where the tip could be pinching since loose.</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Then, I asked him what could have
caused this to happen. And he said that there were a couple of reasons that
this happened. The first being that since I have osteoporosis it takes much
longer for my bones to heal, which is why I used a bone stimulator after the
surgery. Another reason is because I haven’t been wearing a brace since the
middle of November, and this isn’t because I don’t like the brace or anything
like that. It’s because our insurance wouldn’t approve the script for the brace
because I don’t have diabetes. Which is such a stupid reason. So, now because
the dang insurance didn’t approve my brace, my ankle wasn’t held stable and
never fully healed. So thanks for that. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">But it was the third reason that could have caused this
problem with my fusion that really got to me. The doctor told me that because I
have been walking so much and training so hard at PT, I had inadvertently
caused my screw to become loose. And that was just devastating. I had been
working so hard, pushing myself so much, and to find out that because of that I
had been making myself worse…it just killed my motivation, my spirit, my drive
to keep working harder at physical therapy. I was heartbroken. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">So then I asked the surgeon what I can do to prevent this
from getting worse, and he told me a couple of things. First, he said that I
need to get a new brace for my shoe so that my ankle is supported. And now
that we have new insurance hopefully they will approve it. If not, then we will
have to pay out of pocket for it because we really don’t have a choice this
time. Secondly, he said that I need to start using the bone stimulator again, which
is no problem. It was the last thing he said that felt the final blow. He told
me that I need to stop walking as much for 2 months. That means no weight baring training
for the walk at physical therapy. If he doesn’t clear me in 2 months to walk
fully again, that could mean that I might not be allowed to walk the walk. And
that’s when I took the second step backwards. All the training that I have done
for the last month was for nothing. Because now I can’t train for at least 2
months; and by then it will be time for the walk. <span style="mso-spacerun: yes;"> </span>I won’t be prepared to reach my goal of
walking the full mile in under 30 minutes. So I asked the surgeon what I was
allowed to do. I am allowed to walk without the brace in the house to the
bathroom and to get a drink. I am allowed to walk around outside the house and in
stores, as long as I wear the brace. But there is one caveat. The moment I feel
that pain in my ankle, I am no longer allowed to walk until it completely goes
away. It’s hard because if my foot doesn’t heal and fuse correctly, he might
have to go back in for surgery to re-fuse it. It just sucks because I thought
that I was finally done with my feet and ankles. I thought that I wasn’t going
to have to worry about them anymore. I thought that after 11 pairs of braces/inserts
and 4 surgeries, I was finally done. But I just keep taking steps backwards.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0gkDJIVLq7UbCH4QPztm1jUURphaZsH1fEJnhuDEb27gPrZwmG-V1L8huGzaPhqhAD48UvDCn7vNxRFJzQGhNPmAZfpuDAVtxX1bi3oP51MgmgSxVoew4HrmxMVgN8KgHfvysSk_SGa1f/s1600/Parker%2526Orthodics.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="576" data-original-width="1024" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0gkDJIVLq7UbCH4QPztm1jUURphaZsH1fEJnhuDEb27gPrZwmG-V1L8huGzaPhqhAD48UvDCn7vNxRFJzQGhNPmAZfpuDAVtxX1bi3oP51MgmgSxVoew4HrmxMVgN8KgHfvysSk_SGa1f/s640/Parker%2526Orthodics.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With each new step, I keep growing.</td></tr>
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Come walk with me at the next Walk for Arthritis: <a href="https://events.arthritis.org/index.cfm?fuseaction=donorDrive.participant&participantID=3628" target="_blank">Parker's Purple Playas walk page</a></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Once you get to the page, click on "Parker's Purple Playa" to join our team. It's free.</span></div>
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Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com5tag:blogger.com,1999:blog-8989830041824716140.post-38585830338018982132018-02-04T15:50:00.001-08:002018-02-04T15:50:29.299-08:00Parker's in the Hospital...but We Celebrate Life<span style="font-family: Arial, Helvetica, sans-serif;">As I sit here in the hospital watching my courageous son chat it up with the nurses and docs, I am incredibly grateful for his presence in our lives. There is an odd feeling that comes over me when people come in to see him because the word on the ward is "Parker's Here". I use to get really sad that staff knew him because that confirmed that he has had some frequent flyer miles at both our local hospital and at the hospital his rheumatologist is at (2 hours away). But now, I am joyful that that there are people who love him and seek him out just to say hi. It is really comforting and a beautiful thing to witness him conversing with these amazing medical staff who truly know the value of life.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDK5zCXh9edlUlrWzHakqCejGRF6cALEdgG1bmMtTIjaxVrl19jRTX-_-RpgTiAz2vHE99da8ZiU9uXH0VvKMyQB-F7YRvB4E4P0mntKtMLnMfyMK0FKXvWI0VpNuPHzBPTmjKzFR4vsFv/s1600/20180204_184013.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDK5zCXh9edlUlrWzHakqCejGRF6cALEdgG1bmMtTIjaxVrl19jRTX-_-RpgTiAz2vHE99da8ZiU9uXH0VvKMyQB-F7YRvB4E4P0mntKtMLnMfyMK0FKXvWI0VpNuPHzBPTmjKzFR4vsFv/s320/20180204_184013.jpg" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif;">And I am so proud of the young man he has become. Last night, in the midst of all that was happening with him, one of his docs shared that she really didn't understand why Parker has so many health issues and that things are not "easy". And not only does he have multiple overlapping conditions, but he also seems to have crazy drug reactions and side effects. But it's what she said next that really touched my heart. She said that she knows that all this is hard but that she really feels that Parker is making a difference and raising awareness about autoimmune diseases. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Sometimes, really difficult stuff happens and we have moments of fear and wonder how and why the things that happen, happen...but in this moment, it felt like his voice has purpose. I shared this with Parker, because sometimes I don't think he realizes that although all this is happening to him, his story <u>is </u>reaching and touching others. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Recently, PhRma contacted him to share that one of the interview/videos that he did with them as part of their #GoBoldly campaign has been getting loads of traffic. We went to see just how much and we were completely blown away that this video has over 1.2 million views. Check it out:</span><br />
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/1WBeB6RsH5s/0.jpg" src="https://www.youtube.com/embed/1WBeB6RsH5s?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://www.youtube.com/watch?v=1WBeB6RsH5s" target="_blank">Go Boldly Together: JRA</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">He was telling one of the nurses about it today and that we need to get the word out more that children can have some really difficult days living with juvenile arthritis and that for some it can be life threatening. So even though we are at the hospital, it is moments like these that just make me pause and really appreciate life, my children, our family and friends, and all those amazing medical staff who have chosen to give back to this world. I will always be grateful for the people who share in our lives.</span>Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-44908189046085696462017-10-19T14:41:00.002-07:002017-10-19T14:41:47.274-07:00Just a Bit of How Things Are…<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I know we have been quite … Parker has not been feeling well
at all. As a mom, it is incredibly hard
to watch your child struggle day after day.
I keep thinking, tomorrow will be better…we are going on two really
rough weeks with loads of inflammation and some adrenal issues. His adrenal insufficiency can be pretty scary
and every time this starts up, I feel my heart squeeze so tight it hurts. We came so close to losing him with one of
his adrenal crisis episodes and I tell myself we are better equipped with both
knowledge and meds now, but I still get scared. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Parker is now taking a stress dose for his adrenal
insufficiency because he might also be fighting a virus. And he is also taking meds for his pain and inflammation. During these last 2 weeks, he has barely been
out of bed. The balance of helping him
move so he doesn’t hurt more from being stiff, and the balance of not moving too
much that it makes things worse, is quite delicate. And I admit, I am not sure if we will ever
master that.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It’s been hard for me to write blogs lately…I have wanted to
allow Parker to tell his own story. But
when Kristen was here for her extended stay, she and Parker told me that a mom’s
perspective is also valuable and they encouraged me to blog more. The thing is, it makes everything so “real”…and
I keep thinking and praying that Parker will get better…in some ways he has but
in other ways, well… It is just our reality.
<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So I cry in private on the really hard days; and I try as
hard as I can to be “normal”…going to work, helping others, being as social as
I can, and sometimes just being quiet and to myself. On the “good days”…I just want to do
everything we can fit in because I want so badly for Parker to experience
JOY. Of course, there seems to always be
a price to pay for joyful interludes. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Having a child with chronic illness can be quite lonely…because
it is chronic, conversations are hard. Parties
are harder… I don’t know if other moms have these moments too…where you stand
in the middle of a room full of people in a buzz, usually for a joyful
gathering and you feel totally alone. It
is the weirdest thing ever. I don’t know
how to begin conversations anymore. And
I don’t think people know how to converse with me. And sometimes, I avoid … because it is
easier, less exhausting. It’s like I am
holding onto my reserves. Just this
week, someone asked about Parker and when I started explaining his surgery it
turned into “oh, I have arthritis too”….and I got to hear all about how this
older woman had it so hard. Then, I felt
horrible because I think she has no idea how her comments hurt …but that is
just it, so many have no idea.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And let me tell you…all you moms with young ones with severe
chronic JA…well, when 18 hits…watch out.
My world is a bit upside down. 18
makes you reassess, plan for the future that you were certainly not prepared
for, and oh the paperwork… I know not
all kids are as severe as Parker, but whoa…this 18 years old stuff is something: Do we do permanent disability? Then there is Medicaid (or will there be…)? Will he live on his own; or should we get a
home with a separate apartment or mother-in-law suite? How long should I work? Will he work?
Will I run out of sick leave?
Will we ever take non-arthritis related trips/vacations? Do we remove his port and put a new one in or
not?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGeCZ4K0_aoUQqx37HXuYpMzNznVPzmYLcEIyaiNqowVzXsmtWKMCGPY7Ez8iqnUNAZWU0RzvCG4P94T0qQneA9Ne2wrU3GFS7fDhGBDlfjuj-kipSSPJqODHTJkRB7Fw1tYIY_ZkhXID0/s1600/20171010_163047.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGeCZ4K0_aoUQqx37HXuYpMzNznVPzmYLcEIyaiNqowVzXsmtWKMCGPY7Ez8iqnUNAZWU0RzvCG4P94T0qQneA9Ne2wrU3GFS7fDhGBDlfjuj-kipSSPJqODHTJkRB7Fw1tYIY_ZkhXID0/s320/20171010_163047.jpg" width="320" /></span></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKGVmaDDb-IgG-wwgrfwl-HESUFvJDPaUS5mQGZXNTrjWanb186TSqdAtQU0cElTPas_49au-YSkhoCzFPBtfrZVAKaL8rZ8Y9vv5Mx8-252ALhwwBPNevyMGwLdyCNt1P-Bmx7UUPjnGd/s1600/20171007_115654.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKGVmaDDb-IgG-wwgrfwl-HESUFvJDPaUS5mQGZXNTrjWanb186TSqdAtQU0cElTPas_49au-YSkhoCzFPBtfrZVAKaL8rZ8Y9vv5Mx8-252ALhwwBPNevyMGwLdyCNt1P-Bmx7UUPjnGd/s320/20171007_115654.jpg" width="320" /></span></a><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And then I remind myself…I can only do what I can do in a
day. So, we do what is needed in the
here and now: Like buying two pairs of
shoes, because one foot needs a nine and the other needs an 11 due to the
ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle
time and a joyful moment…And making a yummy snack of yogurt, granola, and
berries because Parker will eat that. So
I admit, these last 2 weeks have been really hard and we could really use some
better days in the near future.</span></div>
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<o:p></o:p></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-62815212819088639012017-08-28T13:36:00.001-07:002017-08-28T13:36:24.546-07:004th Foot/Ankle Surgery by Parker<div class="MsoNormal" style="line-height: 150%;">
<span style="font-family: "Arial",sans-serif;">As
I am writing this, I am less than 24 hours away from my 4<sup>th</sup> foot/ankle
surgery. I am actually excited for this surgery because last year I had the
same surgery on my other ankle; and since then I have been walking more. So, I
know this will help, but part of me can’t help but be a little nervous. However,
I am not nervous about the surgery but what I am nervous about is the recovery.
<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 150%;">
<span style="font-family: "Arial",sans-serif;">The
recovery for this will be anywhere from 2-4 months. I will probably have a cast
on for about a month, then a boot for another month after that. Next, I will
have a brace that goes up to just about my knee for a month, then one that just
goes above my ankle for another month after that. Meanwhile, during this whole
process, I will be doing physical therapy. The part that is the most annoying
to me is having to shower with a cast. Luckily, I have done this before so I
know what I’m getting into. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 150%;">
<br /></div>
<div class="MsoNormal" style="line-height: 150%;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsicL0d2u8Ma2eVkl2X9-irbafLDggRjWhODEft0ib0Lc2ujbLdkbmBMHYrVe_sR-3FcLw1YIpwrWHyp-ttkP7Ml8nTwPlXVV1rltm-wlNQuWb8P7PGbLO49sC9p1vHQr8XFN1gk3Opga5/s1600/ParkerKristen.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsicL0d2u8Ma2eVkl2X9-irbafLDggRjWhODEft0ib0Lc2ujbLdkbmBMHYrVe_sR-3FcLw1YIpwrWHyp-ttkP7Ml8nTwPlXVV1rltm-wlNQuWb8P7PGbLO49sC9p1vHQr8XFN1gk3Opga5/s400/ParkerKristen.png" width="400" /></a><span style="font-family: "Arial",sans-serif;">So
I sit here thinking to myself, how am I going to do this? The first thing that comes to my mind is one
of my best friends in the whole world, Kristen (Kmac), and how she is the
strongest person in the world. If you didn’t know, Kmac ended up paralyzed due
to her arthritis. Now she lives her life in a wheelchair. But that wheelchair
doesn’t hold her back. Kristen still lives her life to the fullest whilst being
completely independent. But the reason that Kmac is the first person to come to
mind is because of something that she said to me earlier this year at the Houston
arthritis conference. What she told me was that before she was paralyzed, she
was in constant pain but at least she was able to walk; and now that she can’t
walk, she isn’t in constant pain. It was what she said next that truly inspired
me. She said that she would go back to being in constant pain if that meant she
could walk again. So for the rest of that trip, I refused to use my wheelchair
when I was with her (which was all the time), because I felt that since I do
have the ability to walk; I should use it no matter how much pain it caused me.
On the last day of the trip, Kristen came up to me and told me that she was so
impressed that I walked the whole trip even though it caused me to be in
immense pain, which meant the world to me. She then said that she wanted me to
use my wheelchair that day. So I did and that trip made me realize that I am
capable of far more than I realize. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 150%;">
<br /></div>
<br />
<div class="MsoNormal" style="line-height: 150%;">
<span style="font-family: "Arial",sans-serif;">The
next week I went to camp to be a counselor and I decided that I wouldn’t use my
wheelchair for the whole week. And you know what I did? That week I may have
had to take extra meds but I walked a total of 60,000 steps. That was even more
than my dad had walked that week. So at the end of the day, I want to thank
Kristen for giving me the strength to get through this upcoming surgery
tomorrow. And to you, Kristen, if you are reading this, in my eyes you are the
strongest person in the world; so keep fighting and I love you girl.<o:p></o:p></span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com5tag:blogger.com,1999:blog-8989830041824716140.post-5468673430918336812017-07-01T10:26:00.003-07:002017-07-01T10:26:36.865-07:00Happy JA Awareness Month
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</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXcAICFFBaIUtABbop8YBTtd-ZpOqg43ExYeYF_HHSXwKuyt03-1pxmxTGcf3fIZOYgbKD69STSJdmH__0kGgSguWUs3-SxQ4GXDofzgFuAfI7WioEJg3iUkHBljLVvb_n6BlWLthb6HPw/s1600/IMG_1475.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXcAICFFBaIUtABbop8YBTtd-ZpOqg43ExYeYF_HHSXwKuyt03-1pxmxTGcf3fIZOYgbKD69STSJdmH__0kGgSguWUs3-SxQ4GXDofzgFuAfI7WioEJg3iUkHBljLVvb_n6BlWLthb6HPw/s320/IMG_1475.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt5YyOg_-H7q44kYX0YEJ-7o36JLb8PoZQiPDdxLUNFvq5vK3Wg7RoNS__9XGTGwZPrA59y5tBeftoj9g3eQkHMCi-qWg9S5scizzNIJ9x720L4NMMd2DUmB3RTzMy8pSL26lmbDNLnoel/s1600/IMG_0030.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt5YyOg_-H7q44kYX0YEJ-7o36JLb8PoZQiPDdxLUNFvq5vK3Wg7RoNS__9XGTGwZPrA59y5tBeftoj9g3eQkHMCi-qWg9S5scizzNIJ9x720L4NMMd2DUmB3RTzMy8pSL26lmbDNLnoel/s320/IMG_0030.JPG" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Juvenile Arthritis Awareness month has officially begun…The
years seem to loop back around quickly and I feel a little bit like a broken
record; but we desperately need a cure.<span style="mso-spacerun: yes;">
</span>We have been a little quiet lately, not knowing what the future holds,
trying to make big decisions, and wishing there was really big progress around
the corner.<span style="mso-spacerun: yes;"> </span>Parker has been in, what
feels like, a holding pattern.<span style="mso-spacerun: yes;"> </span>Every
month, when we refill his cosentyx (now on for nearly 6 months), they ask if
symptoms are improving, getting worse, or staying the same…I say staying the
same.<span style="mso-spacerun: yes;"> </span>They say great.<span style="mso-spacerun: yes;"> </span>And then I say but same is not great…it doesn’t
seem to have helped him yet.<span style="mso-spacerun: yes;"> </span>He is also
on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb,
so we don’t know how much longer he is going to use it.<span style="mso-spacerun: yes;"> </span>Docs, nurses, and pharmacists all say that is
not one of the side effects…I beg to differ because, at least for Parker, it
is. (And by the way, he tried the other auto inject of otrexup and the numbness
was even worse).</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="border-image: none; margin: 0in 0in 8pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimT18oqwUnOGCPA3rvIk9wLt12r9CAIxtpGy5g0gkqbYFBUB9aVw_u4Ype_UUZhy2E2sl26Us37-y5jT8vsVhifFnc19HGO4NjSSElsahzc0SMWtdCZao-BxAznWlWAo_yjU0oIZSerdYD/s1600/Photo+Mar+23%252C+2+11+22+PM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimT18oqwUnOGCPA3rvIk9wLt12r9CAIxtpGy5g0gkqbYFBUB9aVw_u4Ype_UUZhy2E2sl26Us37-y5jT8vsVhifFnc19HGO4NjSSElsahzc0SMWtdCZao-BxAznWlWAo_yjU0oIZSerdYD/s320/Photo+Mar+23%252C+2+11+22+PM.jpg" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif;">I am a little more worried these days, wondering what the
internal organs are doing.<span style="mso-spacerun: yes;"> </span>He has had
many issues since my last blog post.<span style="mso-spacerun: yes;">
</span>Gastrointestinal issues (possible crohns, but meds might be masking it),
Kidney stone that had to be blasted out, many flares with fevers and rashes,
the never ending battle of pain, adrenal crisis twice, possible dysautonomia
flares, and the need for a re-do on this right foot/ankle/tibia.<span style="mso-spacerun: yes;"> </span>He now has surgery scheduled for August
28.<span style="mso-spacerun: yes;"> </span>The surgeon will be fusing that foot
like his left, with 3 bolts.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Through it all, Parker fights with his driven spirit and is
balancing these not-so-fun medical issues with real fun.<span style="mso-spacerun: yes;"> </span>He is part of a large campaign that will
launch later this month (yes, that’s a little teaser); he was selected to be a “Leader
in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up
for his first year at the JA Conference as a “young adult”…Yes folks, he is
turning 18 on August 5.<span style="mso-spacerun: yes;"> </span>I still can’t
believe my kids are now both adults.</span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-4259288272974222442017-02-03T09:54:00.001-08:002017-02-03T13:15:48.557-08:00My Monthly “One Moment” with the Specialty Pharmacy<br />
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<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Filling Parker’s SPECIALTY meds is really a very special
kind of experience…I know you all want to see through my lens for a moment…don’t
you?!</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">You know, because Parker is extra SPECIAL, his meds can’t be
filled at the local walk-in kind of pharmacy…on no…they are mailed on ice in
these little white styro-foam coolers…and every month, I think, how many igloos
are now in our landfills.<span style="mso-spacerun: yes;"> </span>And I think we
have more ice-packs than food.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">A call to this very “special” pharmacy goes a little like
this…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I dial, then hit the many prompted numbers to get a person,
then the kind voice on the other end asks how they can help…thinking they can…but
I know that they can’t…and I am about to cycle through at least 3 people…but
today was an extra kind of special.<span style="mso-spacerun: yes;"> </span>I
got to talk to 9 people <span style="mso-spacerun: yes;"> </span>… most of who
were totally helpless…because their system is BROKEN.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So the first person says “one moment” and puts me on hold…and
I get to listen to their jazzy little beat (ba-da-ba-da…bit-dit-dit…bit –dit-
dit…do-wa).<span style="mso-spacerun: yes;"> </span>That little loop is 30 seconds
and it loops and loops over and over.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So I put my phone on speaker and go about my business
because I know it will be anywhere from 5 minutes to 10 minutes before the first
person will begin assisting. <span style="mso-spacerun: yes;"> </span>But I get
to listen to that jazzy little bit…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I get the second person and I explain again that I need to
speak with someone who can fill HyQvia from the IVIG team (because I know that
with this script on the list, even though there are 2 others for today, I can’t
"pass go" until this one is filled.).<span style="mso-spacerun: yes;"> </span>I
hear “one moment please”…cue 5-10 minutes of jazzy little bit loop…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">“Hi, who am I speaking with?”<span style="mso-spacerun: yes;"> </span>I run through name, parent name, DOB, address…
“I see you need to fill Ilaris, Otezla, and HyQvia, but I need to get you to
the team that can help you.”<span style="mso-spacerun: yes;"> </span>I ask what
team I am with and am told, Rheumatology.<span style="mso-spacerun: yes;">
</span>I tell her “wait, you can fill the Ilaris and Otezla”.<span style="mso-spacerun: yes;"> </span>She replies, “No mam, I need to get you to
the correct department, I can’t fill the HyQvia. One moment please.”<span style="mso-spacerun: yes;"> </span>Cue jazzy little bit….</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This time, about 15 minutes later, I get a grumpy lady who
is asking questions at a quick time speed of that jazzy bit.<span style="mso-spacerun: yes;"> </span>She fills the med and is acting like she is
done…I am like “wait…there are supplies too”.<span style="mso-spacerun: yes;">
</span>I hear “what do you want”…I kindly explain that all the supplies that I
got last month were wrong and luckily I had extra supplies on hand and was
still able to administer the infusion.<span style="mso-spacerun: yes;">
</span>But I must get the right supplies this round because I don’t have
spares.<span style="mso-spacerun: yes;"> </span>I ask her to fill the same as
December’s supplies.<span style="mso-spacerun: yes;"> </span>Again she acts like
she is done and wants off with me as quick as possible…”oh, I am not done…I
need to fill 2 more meds”<span style="mso-spacerun: yes;"> </span>and I explain
I need to be transferred back to the rheumatology team.<span style="mso-spacerun: yes;"> </span>“one moment please”….cue jazzy little bit for
another 5 minutes….</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I get the next person and they can’t help out at all…”This
is a specialty med mam, I need to transfer you to the team who can help. One
moment please”…by now I am laughing because I just have to…(ba-da-ba-da…bit-dit-dit…bit
–dit- dit…do…….<u>silence</u>……disconnected).<span style="mso-spacerun: yes;"> </span>Here I go…onto
repeat mode all over again.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I dial and literally get to go through this all again.<span style="mso-spacerun: yes;"> </span>I explain what I am calling to refill and
that the HyQvia has been completed and to PLEASE transfer me to the
rheumatology team….”One moment please.”<span style="mso-spacerun: yes;">
</span>Ok, let’s be real, we all know by now that it will most certainly not be
“one moment” and I now officially hate jazz.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">And… even though I had explained that I already filled the
HyQvia, they transferred me there again.<span style="mso-spacerun: yes;">
</span>Guess what, I start laughing because this is too funny not to laugh at
(45 minutes later from my initial call).<span style="mso-spacerun: yes;">
</span>I get the guy to laugh and he transfers me to who can help, with a sweet
“one moment please”.<span style="mso-spacerun: yes;"> </span>Cue jazzy
irritating bit…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Oh the poor woman who picked up the line…we both didn’t know
that I had had enough “moments”…She was with the main refill line, not the
rheumatology team and when she said “one moment please”…I said “No, wait.<span style="mso-spacerun: yes;"> </span>I really don’t have any more moments to spend
trying to fill these scripts.<span style="mso-spacerun: yes;"> </span>I need to
speak with a supervisor.”<span style="mso-spacerun: yes;"> </span>I know I took
her off guard.<span style="mso-spacerun: yes;"> </span>Because she said “I can’t
fill these meds.<span style="mso-spacerun: yes;"> </span>They are specialty
meds.<span style="mso-spacerun: yes;"> </span>I need to get you to the team that
can help." I tell her that I have been trying to fill these scripts for an hour now.<span style="mso-spacerun: yes;"> She says..."an hour?" </span>I explained and then tell her that my son is on
a lot of “specialty meds” because he is one special kid and I work full time
and I am a mom who is trying to help my child.<span style="mso-spacerun: yes;">
</span>And I demanded that she get me to a person who can actually help me <u>complete</u>
this order.<span style="mso-spacerun: yes;"> </span>She apologizes in a very
flustered manner.<span style="mso-spacerun: yes;"> </span>I actually feel a little
sorry for her, but I stand firm and say I need to speak to a supervisor.<span style="mso-spacerun: yes;"> </span>Poor thing…she said “one moment please”….jazzy
bit plays and I am now an hour into this.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When she finally comes back on 10 minutes later she says, “I
have someone who can assist you”…I say I so hope so and we both wait…silence…I
say “hello?”<span style="mso-spacerun: yes;"> </span>and the poor soul I let
have it says, “Oh my gosh, we were disconnected.”<span style="mso-spacerun: yes;"> </span>And she sounds like she is going to cry.<span style="mso-spacerun: yes;"> </span>I find myself counseling her, saying it is not
her fault and that their system is broken and I don’t know how any of them can
work there.<span style="mso-spacerun: yes;"> </span>She says she WILL get
someone to help me and she told me to hang up, and she would have someone call
me back so I wouldn’t have to be on hold.<span style="mso-spacerun: yes;">
</span>Halleluiah…No more <u>moments</u> with that dreadful jazzy bit…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;">John call me back, fills the final meds.<span style="mso-spacerun: yes;"> </span>Then explains to me that Parker’s in a very
special group of patients with a lot of meds and supplies and there is a note
on his file that says “don’t fill, send calls to the IVIG team”…I explain that
I already know this and no matter how much I try to help them on the other end
of the line to do this correctly, by first going to the IVIG team, and then to
the rheumatology team, I always speak to at least 4 people… but today he was my
9<span style="font-size: small;"><sup><span style="font-size: xx-small;">th</span></sup>.<span style="mso-spacerun: yes;"> </span>We got through the order
and then he said I could set up his records on-line and do his orders over the
internet.<span style="mso-spacerun: yes;"> </span>SIGN-ME-UP…But…I will still
have to call for the IVIG and new scripts.<span style="mso-spacerun: yes;">
</span>Well, at least this is improvement…right?</span></span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I tell him that I am thankful for this partial solution and
then he gives me his direct number for the future and says that if this starts
happening again when I call in, that I can call him direct or even have the
team text him; and he will call me back and help me fill scripts efficiently,
so that I can work and take care of my son.<span style="mso-spacerun: yes;">
</span>I tell him I look forward to him helping me in the future … and we both
knew that this was probably true because their system doesn’t work in our favor
and we will likely talk again.<span style="mso-spacerun: yes;"> </span>He
admitted that patients like this fall through the cracks and that it is wrong
and he hopes to correct it.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I know this is a long rant…but I want other caregivers out
there to know that there is this solution. Also I want those with healthy children
to be grateful that all you need to do when your kid has a need for a pharmacy is
drive down the street.<span style="mso-spacerun: yes;"> </span>That is truly a
gift.<span style="mso-spacerun: yes;"> </span>1 hour and 45 minutes later, I am
grateful for these meds that keep our child ALIVE!</span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-55092387883024624472017-01-30T16:51:00.001-08:002017-02-03T09:54:39.886-08:00A New Diagnosis…A New Biologic<br />
<br />
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">So much has happened and yet it feels a little like time
stands still.<span style="mso-spacerun: yes;"> </span>Since Thanksgiving,
Parker has been struggling. <span style="mso-spacerun: yes;"> </span>Even with
his multiple nerve ablations, he still has much lower back pain. In addition,
he is incredibly fatigued.<span style="mso-spacerun: yes;"> </span>He did repeat
MRIs and unfortunately, since March, this darn JA has progressed even
more.<span style="mso-spacerun: yes;"> </span>He officially received an
additional diagnosis in November of Anklyosing Spondylitis (AS).<span style="mso-spacerun: yes;"> </span>The doctor is very concerned that while we
have been treating his systemic JA, the AS has progressed.<span style="mso-spacerun: yes;"> </span>So she started talking about a change in
treatment.<span style="mso-spacerun: yes;"> </span>Of course, any time there are
med changes it is scary.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">In the meantime, 2 labs were not too good.<span style="mso-spacerun: yes;"> </span>Prograf (anti-organ rejection drug) has been
working really well for the past 3 years, but now it is affecting his
kidney.<span style="mso-spacerun: yes;"> </span>So, we had to stop it.<span style="mso-spacerun: yes;"> </span>He is now on otezla and they have seen some
kids with psoriatic features do well on this.<span style="mso-spacerun: yes;">
</span>So we are giving it a try.<span style="mso-spacerun: yes;"> </span>In
addition, his immunoglobulins were low, even with the IVIG he gets monthly
(infusion of blood plasma).<span style="mso-spacerun: yes;"> </span>So they
increased the amount.<span style="mso-spacerun: yes;"> </span>We are hoping this
helps boost his immune system.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">Then in December, Parker had blood and mucus in his stools.<span style="mso-spacerun: yes;"> </span>And we had an appendicitis scare, that was actually
swollen stomach lymph nodes.<span style="mso-spacerun: yes;"> </span>This has
happened before.<span style="mso-spacerun: yes;"> </span>For some reason, the
systemic JA tends to attack his lymph nodes.<span style="mso-spacerun: yes;">
</span>In addition, the lymph nodes in his neck have been large.<span style="mso-spacerun: yes;"> </span>We did an ultra sound and it was
confirmed.<span style="mso-spacerun: yes;"> </span>There was also concern about
his thyroid, but that looked ok on the ultra sound. Endocrine is now running
thyroid labs and glucose labs (because those were elevated last round).</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">So, in early January, Parker saw a GI specialist who
immediately did a scope.<span style="mso-spacerun: yes;"> </span>The scope came
back good with no explanation for the blood.<span style="mso-spacerun: yes;">
</span>The only issue was his esophigils were elevated, which may mean that his
body is responding to the corn he has been eating.<span style="mso-spacerun: yes;"> </span>Allergist cleared him as no longer being
allergic to corn, but now those labs have been added to his list of tests.<span style="mso-spacerun: yes;"> </span>It might be an intolerance response.<span style="mso-spacerun: yes;"> </span>Although inflammatory bowel diseases did not
come up on the scope, we are going to keep an eye on this because he is at risk
with all his issues.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">Finally, we thankfully got approval for the new biologic,
cosentyx, which is going to target this AS issues.<span style="mso-spacerun: yes;"> </span>We are hoping that it will somehow help his
systemic JA as we don’t know if it will or not.<span style="mso-spacerun: yes;">
</span>It is an IL-17 drug…for those of you who are wondering.<span style="mso-spacerun: yes;"> </span>It looks like he may have to stop Ilaris
which has been keeping his systemic internal organ issues with his heart and
lungs, fairly quiet.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">So all of this has been going on while I had an MS
scare.<span style="mso-spacerun: yes;"> </span>After 3 docs said I could have MS
I went through a series of tests and I don’t.<span style="mso-spacerun: yes;">
</span>Thank God!<span style="mso-spacerun: yes;"> </span>They believe that I
have been experiencing something called Hoshimotos encephalopathy.<span style="mso-spacerun: yes;"> </span>In addition, I was on B12 injections from
when my Graves disease was active, and now I am in Hoshimotos mode.<span style="mso-spacerun: yes;"> </span>My body had too much B12 and that is not
good.<span style="mso-spacerun: yes;"> </span>Since stopping it, some of my
symptoms are much better.<span style="mso-spacerun: yes;"> </span>My thyroid has
not been nice and neither has my own RA.<span style="mso-spacerun: yes;">
</span>So if I have not gotten back to you…all of this is why.<span style="mso-spacerun: yes;"> </span>I so apologize.<span style="mso-spacerun: yes;"> </span>I am working on removing as much stress as
possible for myself and inserting as much JOY as possible for Parker and our
family.<span style="mso-spacerun: yes;"> </span>Love you all and thank each of
you for never giving up on us.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com8tag:blogger.com,1999:blog-8989830041824716140.post-81016274533037721962016-11-13T12:38:00.001-08:002016-11-13T13:03:54.307-08:00Parker wants me to share…<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrr5l0Tz_KxDZ8Ryo56zuFKmeF7anW-GVUy3uSiFF9rLLpOEk8euop14xY2bDnFyLwR-0Rn-wauhFq9KGiEKvPmpv1mIAv2lhHKCervOZcS-lXnltbNxKX6H06VneFgQg5_hfZior0sacm/s1600/2016-04-30+14.54.04.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrr5l0Tz_KxDZ8Ryo56zuFKmeF7anW-GVUy3uSiFF9rLLpOEk8euop14xY2bDnFyLwR-0Rn-wauhFq9KGiEKvPmpv1mIAv2lhHKCervOZcS-lXnltbNxKX6H06VneFgQg5_hfZior0sacm/s320/2016-04-30+14.54.04.jpg" width="320" /></a></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">Parker asked me why I haven’t blogged lately.<span style="mso-spacerun: yes;"> </span>I told him that now that he is older, it
really is his blog and his story and I didn’t want to say things that he may
not want shared.<span style="mso-spacerun: yes;"> </span>He asked me to please
blog and tell everyone what is going on, because he has such a hard time
staying awake lately and because it is OUR story…our family’s story.<span style="mso-spacerun: yes;"> </span>So here I am, writing, and realizing I have
also been avoiding voicing out loud that this life with autoimmune issues has
been so very draining on all of us.</span></div>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">I have been going through all kinds of tests due to my own
autoimmune issues.<span style="mso-spacerun: yes;"> </span>Logan has been
flaring for about a month and like me, I think he is trying to avoid more
medications.<span style="mso-spacerun: yes;"> </span>And Parker seems to conquer
one thing, just for another issue (or two or three more) to arise.<span style="mso-spacerun: yes;"> </span>Michael and I are realizing we barely have
time for much else…we want to work on our house, which has been neglected since
this journey has begun.<span style="mso-spacerun: yes;"> </span>We want to spend
time with friends, but barely have down time.<span style="mso-spacerun: yes;">
</span>And the thought of adding holiday decorating to our to-do list is just
one more thing to do…and yet, we want to because the result is joy and a
reminder that life is precious.</span></div>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">We want to keep celebrating life’s joys, create simple moments
with beautiful memories, and keep a focus on what is going right.<span style="mso-spacerun: yes;"> </span>And yet, we know, that all of you want to
know what is going on with Parker.<span style="mso-spacerun: yes;"> </span>And
somehow, writing is all down, brings it to the surface.<span style="mso-spacerun: yes;"> </span>I realized yesterday, as I spoke to a friend,
that I have been trying to smothering it all down inside of me in my efforts to
stay as joyful as possible.</span></div>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">I feel like I have lists upon lists…So here it goes…Parker’s
“list” of medical needs:</span></div>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<ul style="direction: ltr; list-style-type: disc;">
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">Parker’s blood labs have been up and down.<span style="mso-spacerun: yes;"> </span>Some are decent and some are yo-yoing.<span style="mso-spacerun: yes;"> </span></span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">His uric acid is high.<span style="mso-spacerun: yes;"> </span>He sees a new doc, a nephrologist, next
week.<span style="mso-spacerun: yes;"> </span>This is doc 18.<span style="mso-spacerun: yes;"> It</span> is possible that this is due to one of his
meds, which we have temporarily stopped and will re-run labs this week.<span style="mso-spacerun: yes;"> </span>Or his kidneys are somehow being affected by
this mean disease.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">Despite all the things we have tried to do to
help his SI joints, they are still bad.<span style="mso-spacerun: yes;">
</span>He is having another MRI, at UF Shands, in the near future.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">He is still thinking about continuing the nerve
ablations…this is a tough one because he was awake for the last one and it was
horrible, but it did help.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">We think he has a leg length discrepancy, so a
scan-o-gram is ordered.<span style="mso-spacerun: yes;"> </span>His bones will
be measured and he may need a lift in his shoe.<span style="mso-spacerun: yes;">
</span>Let’s see how that goes since we still can’t get his shoe orthotic
inserts, post-surgery, approved.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">He is having blood pressure and temperature
issues after showers and doc wants him to go back to cardiologist, which is two
hours away.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">We need to remove his port in the near future
because he has grown out of it and it is pulling.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">He needs to go back to his regular ophthalmologist
because his eyes keep getting really red.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">He has a swollen area on the side of his
neck.<span style="mso-spacerun: yes;"> </span>So, we have an ultrasound
scheduled, since it is near lymph nodes and thyroid.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">Doc is trying to get a new med and a new
biologic approved.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">We took him to orthodontist and he needs
invisaline and botox injections in his jaw.<span style="mso-spacerun: yes;">
</span>Cha-ching…<span style="mso-spacerun: yes;"> </span>Doc had others come
over and feel his jaw joints because he said they were tighter than anyone’s he
has ever felt.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;"><span style="mso-spacerun: yes;"> </span>We took
him to GI doc (actually Michel did…thank you dear God for this man in my life) due
to blood in stools and it is likely due to fissures…whew.<span style="mso-spacerun: yes;"> </span>Easy solution.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">He is having some pulmonary issues again, so
back to pulmonologist and needs to also schedule another sleep study.</span></div>
</li>
<li style="color: black; font-style: normal; font-weight: normal;"><div style="color: black; font-style: normal; font-weight: normal; margin-bottom: 8pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="font-family: "verdana" , sans-serif;">And finally, doc is trying to get him in to NIH
with a doc doing genetic studies on kids with multiple autoimmune issues.</span></div>
</li>
</ul>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">Needless to say, this is a lot for a kid to process.<span style="mso-spacerun: yes;"> </span>He is doing the best he can with the extreme
fatigue in his body.<span style="mso-spacerun: yes;"> </span>And for all those
people who unknowingly ask about school…to make conversation…oh my word…it
breaks my heart every time.<span style="mso-spacerun: yes;"> </span>He has
various answers for this based on who is asking, but there is always a major
pause…The medical stuff seems to consume us. We know and he knows he must get
his GED finished, but oh my word, sometimes it just feels like it is the least
of our worries. <span style="mso-spacerun: yes;"> </span>But he will get there
one day.<span style="mso-spacerun: yes;"> </span>When it happens we will have a
party.</span></div>
<span style="font-family: "verdana" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "verdana" , sans-serif;">So friends and family, please be patient with us.<span style="mso-spacerun: yes;"> </span>We know we don’t connect much and our
interactions have been minimal.<span style="mso-spacerun: yes;"> </span>We wish
we had more time to visit, chat, and go out.<span style="mso-spacerun: yes;">
</span>But please also know, you are all in our hearts each and every day.</span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com5tag:blogger.com,1999:blog-8989830041824716140.post-87909662494655499962016-09-17T15:51:00.002-07:002016-09-17T20:21:47.938-07:00Do You Know What I Want? What I Really Really Want?<br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">I rarely say <u>what I want</u>…I am more about helping and doing
for others.<span style="mso-spacerun: yes;"> </span>So, yesterday I was debating
on if I should dare to really ask all my friends and family what I really “want”.<span style="mso-spacerun: yes;"> </span>As I was thinking about if I should, Michael
changed the station on the radio and the music blared out “I’ll tell you what I
want, what I really really want…”<span style="mso-spacerun: yes;"> </span>I am
taking that as a sign.</span><br />
<span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span><br />
<span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;">What I really really want is for the world to know that kids can
get arthritis (not like Grandma’s osteoarthritis…you know, the
really bad auto inflammatory kind) and I wish there was a public service
announcement, so everyone was really aware.<span style="mso-spacerun: yes;">
</span>But since there is no PSA…maybe Parker’s PhRma Research and Hope Award
video could act as a PSA if everyone got on board and helped it go viral.<span style="mso-spacerun: yes;"> </span>He said what many families who are enduring
juvenile arthritis want the world to know.<span style="mso-spacerun: yes;">
</span></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">So…what I really really want is
for all of you to share with everyone you know this short YouTube video in
hopes that it will go viral and JA will finally have a voice.</span><span style="mso-spacerun: yes;"> </span></b></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><strong><br /></strong></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><strong>Video link:</strong><span style="mso-spacerun: yes;"><strong> </strong> <a href="https://www.youtube.com/watch?feature=share&v=7QEPfzlFwIg&app=desktop">https://www.youtube.com/watch?feature=share&v=7QEPfzlFwIg&app=desktop</a></span></span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">With a grateful heart,</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Rochelle (Parker’s mom)</span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-46750994960208233392016-08-20T15:41:00.001-07:002016-08-20T15:41:18.368-07:00A Day at the Doctor’s Office, by Parker<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1JcMoe0W2oaBccCFnQzF8c-PkDkwslvHGmPBMV1twQf7CycXVOCL9WR-VS-DfJCjrNFFT2A-dHUI7WUsCv8eK0XaWMvq1P2_jr6ntf3DtPg-j09ZmIBIXi5IyMQl-ju0imAWUAoAw6U9/s1600/20160816_151950.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/AVvXsEhJ1JcMoe0W2oaBccCFnQzF8c-PkDkwslvHGmPBMV1twQf7CycXVOCL9WR-VS-DfJCjrNFFT2A-dHUI7WUsCv8eK0XaWMvq1P2_jr6ntf3DtPg-j09ZmIBIXi5IyMQl-ju0imAWUAoAw6U9/s320/20160816_151950.jpg" width="320" /></a><span style="font-family: "Helvetica Neue"; font-size: 13pt;">So we went to the doctor Tuesday and
well it didn't go well. First, I saw the doctor and she told me that there
isn't one drug out there that will do what we need it to do for me. She said in
order for me to feel better, I need to be on two biologics. The preferred ones
being Ilaris and Cosentyx. The main problem now is insurance. One, they won't
approve more than one biologic for me even if that makes me better. Two, I'm
currently on Simponi and the insurance usually won't switch drugs until I get 2
more doses of Simponi.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Helvetica Neue"; font-size: 13.0pt; mso-bidi-font-family: "Helvetica Neue";">This creates even more problems. One
being that this drug is taken every other month, meaning it would be 4 months
before I can stop taking it. Another problem with this is that the Simponi just
straight up doesn't work for me. Also my doctor told the two month span between
infusions is tough on many kids. She said she could try to get the insurance to
move my dosing to once a month so I can be done sooner, but that’s still 2
months before I would stop taking it. So she is likely going to take me off of
it all together since my systemic issues are returning and those issues are
more dangerous.<o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "Helvetica Neue"; font-size: 13.0pt; mso-bidi-font-family: "Helvetica Neue";">I was also told that my SI joints are
doing very bad. She said that even if the nerve ablations work and the SI
joints don’t hurt, they are very inflamed. Now normally I don’t care what my
joints look like as long as they feel good, but this time is different. My
nurse told me that if we don’t treat it soon (meaning switch to a med that
WORKS) they could be permanently fused and I would walk hunched over for the
rest of my life. I know my doctors are doing the best they can but I can’t help
but feel hopeless. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsghhsdECztLkp2n9mJSjhU5kWpavV3YEMtIAFVRO2UIWmnP7GwJSDzy4C1gjsLkKWoumT_8Ouix_wzbleMGvO0bvA7dLoUEypHIpj9WEFJagdKu1AY1nLSu4fuMHt91wWWzZOrSOZQKeG/s1600/FB_IMG_1471658479583.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/AVvXsEjsghhsdECztLkp2n9mJSjhU5kWpavV3YEMtIAFVRO2UIWmnP7GwJSDzy4C1gjsLkKWoumT_8Ouix_wzbleMGvO0bvA7dLoUEypHIpj9WEFJagdKu1AY1nLSu4fuMHt91wWWzZOrSOZQKeG/s320/FB_IMG_1471658479583.jpg" width="320" /></a></div>
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<span style="font-family: "Helvetica Neue"; font-size: 13.0pt; mso-bidi-font-family: "Helvetica Neue";">We even talked about the NIH (national institute for health) and my doc is willing to try to get me in. But she felt that because I am such a rare situation and there aren't many like me with these overlapping conditions that there isn't enough of a sample size to do a study. That was hard to hear.</span></div>
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<span style="font-family: "Helvetica Neue"; font-size: 13.0pt; mso-bidi-font-family: "Helvetica Neue";"><br /></span></div>
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<span style="font-family: "Helvetica Neue"; font-size: 13.0pt; mso-bidi-font-family: "Helvetica Neue";">My doc told me she prefers to take me
off the Simponi and fight to get back on Ilaris. Ilaris is an IL-1 blocker and
that is what is needed for my systemic issues with fevers, rashes, and internal
organs. However, I really also need a
TNF blocker due to my ankylosing spondylitis, which is inflaming my SI joints
and causing my back and neck issues. I
just hate insurance right now and I feel hopeless. And I was finally feeling
like I was #strongerthanja.</span><o:p></o:p></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com4tag:blogger.com,1999:blog-8989830041824716140.post-53078382092134562282016-06-19T16:59:00.003-07:002016-06-19T16:59:47.005-07:00I Did What I Thought was Impossible with Much Gratitude in My Heart...by Parker<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">On May 7<sup>th</sup> 2016 I
did what I thought was impossible. I walked the full mile at this year’s Walk
To Cure Arthritis. But it wasn’t just me; it was US! Whether you were at the
walk or not all of you were there walking with me in spirit. This year our team
raised more money than we ever had before; we raised over $27,000. And I couldn’t of
done it without each and every one of you. But there are a couple of special
people that helped me do the impossible, and those people know who they are.
Through out that walk these people stayed with me walking at “Parker speed”.
And it was their and all of you guys’ support that got me through that. Thanks,
all of you, for supporting me.<o:p></o:p></span><br />
<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Enjoy Pictures and Video Below...</span><br />
<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Video Crossing Finish Line</span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz6NMr7O7LufxLRbIO5g7BREBeU4RINXZxFtJYje0tSTLhs4SwFI2BCWjYGxVt9wXexwOhYFpjrVv6eTbbctA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Time Lapse of Entire Walk with GoPro</span></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Z0vKT7CC6nU/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/Z0vKT7CC6nU?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Speech I Gave About Belle, the Local Youth Honoree</span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzco-J1de6btXnWEjNIicyGnZQtiNM8h3d3F98ONG8pINYk4fcn0AOgkg_KxaKU3mgE1bUb3TsZRJkAt3XcQg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: "arial" , sans-serif; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Have Fun Scrolling through Walk Pics</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfIji2CEXZm2HJ9Kc6muf3gG8MP6eyuwLhWWMJSmfRF1wbwvYAEzTQlMj4wjQJzurw0IY4Kvlq2GohXRN-JTlA6dCiSoEe-3WBd706rl8OjfVJBnjJ6uy3nRCD51Vy2ivRuS9UGHDCVCmI/s1600/2016-05-07+09.08.06.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfIji2CEXZm2HJ9Kc6muf3gG8MP6eyuwLhWWMJSmfRF1wbwvYAEzTQlMj4wjQJzurw0IY4Kvlq2GohXRN-JTlA6dCiSoEe-3WBd706rl8OjfVJBnjJ6uy3nRCD51Vy2ivRuS9UGHDCVCmI/s320/2016-05-07+09.08.06.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy7apNsGJvaDvgCxSPpQbs_2UFMZX475jcy5dTfgysqIgKMt9n3owg8lJzIo8OOOZ5aYJ8MeayxyApxS5WKm_aDE52GK1Ftmd3GK97Mjh31nXgdbTmUAk8CLHbEGd_xSNCVAQ7-hN0l0pj/s1600/2016-05-07+09.10.57.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy7apNsGJvaDvgCxSPpQbs_2UFMZX475jcy5dTfgysqIgKMt9n3owg8lJzIo8OOOZ5aYJ8MeayxyApxS5WKm_aDE52GK1Ftmd3GK97Mjh31nXgdbTmUAk8CLHbEGd_xSNCVAQ7-hN0l0pj/s320/2016-05-07+09.10.57.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl6RXDH124T-ZeyEHjLDF7SmPXMrFsAP0cxFEQHaAu_q4bbXib-1Gng_BL4RCEK4EuNzcp42GYXZzd5FwWDQ1XIYtNs98a7mCoZ_Uj3M78Zi6ZckRDi-SoY0Mrx2UPkyGpBB76j3Tiu93p/s1600/2016-05-07+09.33.27.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl6RXDH124T-ZeyEHjLDF7SmPXMrFsAP0cxFEQHaAu_q4bbXib-1Gng_BL4RCEK4EuNzcp42GYXZzd5FwWDQ1XIYtNs98a7mCoZ_Uj3M78Zi6ZckRDi-SoY0Mrx2UPkyGpBB76j3Tiu93p/s320/2016-05-07+09.33.27.jpg" width="180" /></a></div>
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Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com4tag:blogger.com,1999:blog-8989830041824716140.post-16402847835210245272016-05-17T16:42:00.000-07:002016-05-17T16:42:42.633-07:00Taking a Leap of Faith, One Step at a Time<div class="MsoNormal">
Parker is working on a blog post to share with everyone
about how he “walked the entire walk” and how thankful we are to all of you…but
in the meantime, we wanted to share that he is going through some pretty big
stuff right now. Recently his rheumy
shared that she believes that he has an additional overlap disease of ankylosing spondylitis. As we shared previously,
his SI joints are complete inflamed and huge on his MRI. For the last couple of months, his doc has
been trying to get a new biologic shot approved (stelara). Unfortunately, even with an override request
it still wasn’t approved. So, the next
step was to get approval for another biologic (simponi). The bummer is that this med is an infusion
which means we will be traveling back again to the infusion room for treatment. </div>
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<o:p></o:p></div>
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Parker is really in some considerable pain from the SI
joints, and although we tried the nerve stimulator, it didn’t work and had to
be removed. We are going to stay hopeful
that the new biologic will be helpful for his SI joints, along with helping his
jaw, shoulders, back, hip, neck, knees, ankles and feet. But we are seriously taking a huge leap of
faith with this new step forward.<o:p></o:p></div>
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The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and
internal organs. This switch is pretty
scary for us. His doc has checked his
heart and it is good right now, of course that is our biggest concern. So concerning that Michael spoke up and asked
the doc about it. And instead of saying “what
about his pericardia effusion” he asked “what about his periodic confusion”…I
wish you all could have seen her face, the hesitation as she tried to
comprehend what he said was hilarious (oh what stress can do to one’s
communication)…and she replied, “I don’t know what to do about your periodic
confusion, but we can check for pericardia effusion and keep a close eye on
him.” I tell you, there are so many
moments that Michael makes me laugh, but boy the moment was priceless…we all
started laughing. And oh how we needed to
laugh.<o:p></o:p></div>
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So, as we take this new leap of faith, we will be travelling
back to the infusion room starting this week.
Please keep our kiddo in your prayers and thoughts. Much thanks.<o:p></o:p></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-27473952136284683202016-04-24T08:45:00.001-07:002016-04-24T08:45:53.080-07:00Our Strong Kid is WALKING!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiurBNCkEtBoQFNtxZp4iXJgK9aMZTOzkx4qZUWEtsOpKw3ndsIuwe8MdA65w7Ppwv5rpJsNuEbcSrXljtZcw9ZX3Y_sTkt0qMH8wfEW59IPX7U9Ndp-dfjBeAAVA913gd3nTIG3w_I2_tm/s1600/IMG_1475.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiurBNCkEtBoQFNtxZp4iXJgK9aMZTOzkx4qZUWEtsOpKw3ndsIuwe8MdA65w7Ppwv5rpJsNuEbcSrXljtZcw9ZX3Y_sTkt0qMH8wfEW59IPX7U9Ndp-dfjBeAAVA913gd3nTIG3w_I2_tm/s320/IMG_1475.jpg" width="320" /></a></div>
We are a little overdue for an update. There has just been so much going on. I finally have a brief moment to share. We have INCREDIBLE news for those of you who have not heard yet. Parker's right foot is stable and he doesn't need the fusion surgery on that side too. Everything that the docs at the other hospital had concerns about were related to his previous reconstructive surgery. The heal concern was where the surgeon had rebuilt his heal structure and the place they thought was disintegrating was where a pin had been removed and left an open space (still healing). This is a huge relief to all of us and especially Parker.<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjONKHiParAXnqv_mnAAHrEIeIrxEfiwvSovmLqvprKOUcIc13lzh9WxPqLkeaFTRHBOY0GTQNQ-dYus70cfOBR7ZcQHc3hBqla3sXAUILT_vG7jTIQeoRf9lmjgLR4Xm4X2yYgVLdRODn/s1600/20160420_135426.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjONKHiParAXnqv_mnAAHrEIeIrxEfiwvSovmLqvprKOUcIc13lzh9WxPqLkeaFTRHBOY0GTQNQ-dYus70cfOBR7ZcQHc3hBqla3sXAUILT_vG7jTIQeoRf9lmjgLR4Xm4X2yYgVLdRODn/s320/20160420_135426.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Jiffy Popcorn head going into surgery.</td></tr>
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Also, last Wednesday, Parker had the spinal nerve stimulator trial surgery. The surgery went well. Unfortunately, it doesn't seem to be helping his pain, so we will continue onward. The doc will remove it this week. We know that Parker is completely disappointed, as he had hoped that this would be his ticket to get off narcotics. But patience has definitely become a virtue he possesses and is applying once again. We will continue to hunt for a pain solution.</div>
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<tr><td class="tr-caption" style="text-align: center;">Working hard at PT.</td></tr>
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In the meantime, we are revving up for the big walk. Parker is planning on "walking the walk"...this is huge. He has worked so hard to get those feet, ankles, and legs working again. He is going to stand tall as the National Walk Honoree this year! His focus and determination has been remarkable to witness. And we cannot wait to see all of you who can join us on May 7th and walk beside our kiddo. There is still time to sign up for our team: <a href="http://www.walktocurearthritis.org/faf/donorReg/donorPledge.asp?ievent=1145340&supid=345360575" target="_blank">Click here to link to our walk page</a></div>
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And thank you to all who have donated to our team! We are blown away by the support and it is heartwarming to see such love surrounding us.</div>
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Finally, we are counting down the days until Logan comes home for the summer. He has completed his first year at UF and we are so very proud of his accomplishment. His JA was a little mean to him in the beginning and with a little med adjustment and balancing of physical activity, he has been doing great! We can't wait to have both our boys home for the summer.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyiSxg_MqfliIcqCrub9OXuYXaWXlWGbFDKr9O7zvyx9zWDYl3wQeB0JRcnwvnhcAoVPIUuh2jABOR4GEmRqeT4gb14OMBqzAT6TXcmQZ7UHXtb6o6cuDc7PnPHbnzq1J2a1xbQBm-XcJK/s1600/20160406_095125.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyiSxg_MqfliIcqCrub9OXuYXaWXlWGbFDKr9O7zvyx9zWDYl3wQeB0JRcnwvnhcAoVPIUuh2jABOR4GEmRqeT4gb14OMBqzAT6TXcmQZ7UHXtb6o6cuDc7PnPHbnzq1J2a1xbQBm-XcJK/s640/20160406_095125.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Parker left this little bit of HOPE in my garden to surprise me!</td></tr>
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Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-51855381757106352062016-03-16T15:50:00.002-07:002016-03-16T15:50:14.573-07:00Right Foot, Left Foot..No Good Feet<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">We have this kid who never gives up no matter what…Parker’s
body doesn’t seem to have the same drive as his spirit does. All my hopes and prayers are for his
continued strength and healing. For the
past three weeks it seems that he has been having more and more increased pain
in his back, neck, and jaws. We have
adjusted meds but it is not helping.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">Tomorrow we are going up to Shands Hospital. He has a late set of MRIs for his jaw and
SI-joints in his lower back. Back in
November his SI joint MRI revealed huge amounts of swelling. He had them injected with cortisone and has
been taking meds that target this area, but the pain is intensifying. I can’t remember the last time he hasn’t
woken in the middle of the night due to pain.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">And back in 2011, he had jaw issues and there were some
issues on that MRI but the jaw has been fairly quiet until now. So his doc is concerned that one of his
overlapping conditions might be contributing to these flares since it is not
common to have SI involvement in kiddos with systemic JA. I actually giggle when I hear “not common”…like
a nervous laugh…because nothing seems common with Parker.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">Today a dear friend shared with me that her heart broke seeing
Parker struggle through the family walk kick-off last weekend. He came in his wheelchair and rested his head
on the table as he slept through the entire event. Then, he asked to leave
without even lunch nor going through the museum. She said she always sees Parker smiling but
he wasn’t last Saturday…and it so choked me up.
He wants to be present and a part of social interactions but he just
cannot seem to maintain. <o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">He had a friend over this past weekend to play video games
(a great pain distraction by the way) and after less than an hour he came out
and said he just can’t do it anymore and needed to rest. It is clear to Michael and I that something
is not right and we are so fearful of what the labs and MRI will show. The doc has said to pack our bags because she
will likely need to admit him on Friday.
<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQcB7ke4EpMLJfTULPCfWVJKvAPh10WFGiCNwDaMI-wqp64x-OxNmdwYyVpR2pw5ey9h2XrnQSRxnczAQYCtLudHSEAGfmvLREjTXSR0plsGFcwJr7G_wfWrsd1_wkY-e4ucRKo6clhjwp/s1600/20160217_115029.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQcB7ke4EpMLJfTULPCfWVJKvAPh10WFGiCNwDaMI-wqp64x-OxNmdwYyVpR2pw5ey9h2XrnQSRxnczAQYCtLudHSEAGfmvLREjTXSR0plsGFcwJr7G_wfWrsd1_wkY-e4ucRKo6clhjwp/s320/20160217_115029.jpg" width="320" /></a><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">The last few rounds of PT have been literally torture for
him…and yet he doesn’t give up as tears stream out the corners of his
eyes. The PT checked his right foot (the
one that he didn’t have this last surgery on) and he was manipulating it in a
way it should not move and then advised me to call the doc because it could
mean that the cadaver bone that was put in his foot back in March 2015 may have
also been rejected and absorbed into the body because it was feeling like it wasn’t’
there. It just breaks my heart beyond
words at the thought that Parker might have to get his right foot/ankle fused
too. So we asked the doc to also set up
an x-ray for tomorrow since we will be at radiology anyway. <o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I am literally choking back tears for my kiddo. I pray for understanding where there is no
way I can comprehend what is happening over and over to my sweet kid. This disease has literally taken his
childhood from him and he knows it. And
yet, somehow he carries himself around each day on those horrible feet and
ankles sharing his smile with the world and comforting others.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">We will continue to fight with all our might for him and
for funding for a cure. We must because it
is the one positive thing we can do.
Please know that we so appreciate every text, the sweet cards of
encouragement many of you send to Parker, and every single penny donated to his
walk team. There are so many kids that
need all of our support.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I will continue to update on Facebook as I can this
weekend. And I will try to update the
blog too to keep everyone up to speed.
Just please continue to shower us with prayers, love, hope, and strength.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">And if you want to help, just click on the “want to help”
tab at the top of our blog. Much
gratitude and love.</span>Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com4tag:blogger.com,1999:blog-8989830041824716140.post-3516436196800016002016-02-09T15:04:00.004-08:002016-02-09T16:29:57.475-08:00The Boggy Creek Boys Spread JOY<span style="font-family: "arial" , "helvetica" , sans-serif;">It's time to spread a little JOY! And because of Camp Boggy Creek (one of Paul Newman's Serious Fun Camp, <a href="http://www.boggycreek.org/" target="_blank">http://www.boggycreek.org/</a>), we said YES to JOY this past weekend. It was our final Family Retreat Weekend because Parker is 16 and will be aging out. There is not enough good I can say about the miracle of camp</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course Parker went out with a bang. T<span style="background-color: white; color: #141823; line-height: 19.32px;">hanks to these Dads for making his final performance extra special (see video link below). Enjoy the first and final appearance of the </span><a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=251833929715" href="https://www.facebook.com/CampBoggyCreek/" style="background-color: white; color: #3b5998; cursor: pointer; line-height: 19.32px; text-decoration: none;">Camp Boggy Creek</a><span style="background-color: white; color: #141823; line-height: 19.32px;"> Boys: The Godfather (Michael, Dad)</span><span style="background-color: white; color: #141823; line-height: 19.32px;">, The Enforcer (Brian</span><span style="background-color: white; color: #141823; line-height: 19.32px;">), The Facilitator (</span><a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1468584269" href="https://www.facebook.com/tony.valenti.902" style="background-color: white; color: #3b5998; cursor: pointer; line-height: 19.32px; text-decoration: none;">T</a>ony)<span style="background-color: white; color: #141823; line-height: 19.32px;">, The Mayor (</span><a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100000720846106" href="https://www.facebook.com/parker.lentini" style="background-color: white; color: #3b5998; cursor: pointer; line-height: 19.32px; text-decoration: none;">P</a>arker)<span style="background-color: white; color: #141823; line-height: 19.32px;"> and The Heart Throb (Pal Jamar). I laughed so hard my sides hurt. That's one special kind of "YES to JOY". Thank you Camp Boggy staff and volunteers for bringing 20 years of joy to our children. Watch the video and experience the joy for yourself.</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #141823; line-height: 19.32px;"><br /></span></span>
<span style="background-color: white; color: #141823; line-height: 19.32px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.facebook.com/rochelle.lentini/videos/1120349337997456/?pnref=story" target="_blank">Link to video</a></span></span><br />
<span style="background-color: white; color: #141823; line-height: 19.32px;"><br /></span>
<span style="background-color: white; color: #141823; line-height: 19.32px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Also, here are a few pictures of our fun weekend.</span></span><br />
<br />
<table 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/AVvXsEhRezLz7HY1iWy83gEZmSKo6g5uS3qA_LZ3PrZCOXdo80LKMfx9b6nbW1pJ_B8CtfeFczREGl68O96HCTCUEll_GlPHmhLcJcouMrnkt6Sl5KNS78s0dgsvZsneo4_KanRyeiFZfA_kt8QV/s1600/20160206_083519.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRezLz7HY1iWy83gEZmSKo6g5uS3qA_LZ3PrZCOXdo80LKMfx9b6nbW1pJ_B8CtfeFczREGl68O96HCTCUEll_GlPHmhLcJcouMrnkt6Sl5KNS78s0dgsvZsneo4_KanRyeiFZfA_kt8QV/s320/20160206_083519.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family Style Meals</td></tr>
</tbody></table>
<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/AVvXsEhjEDKTZ1BZw1rmG0pHtlJSLZ356Bebj2w7SAHnPHx6woXHE3lrFvHFYtTTqcg-MDMUj2TluFmEvhiRjMABFExFb-ZNVg_mW0LdAbUsGZ11M5TrlQasFZ_e_KETqaXjsw-DmyFMKZbMyC4z/s1600/DSC_0018.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjEDKTZ1BZw1rmG0pHtlJSLZ356Bebj2w7SAHnPHx6woXHE3lrFvHFYtTTqcg-MDMUj2TluFmEvhiRjMABFExFb-ZNVg_mW0LdAbUsGZ11M5TrlQasFZ_e_KETqaXjsw-DmyFMKZbMyC4z/s320/DSC_0018.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun in the Gym</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_uLMSmotN_3M-aXenFlTNkZRaoLxdCEfxLMmy0Hp8vYWuyjZfhNBC10eD8eImaZLPatvItE4ByYcgkX3UY_l4gsWFQem_94Ex1AStdSpUg6F3XYG1FvJOruxTXEiRxgyt8Tt-7gb3_dma/s1600/DSC_0053.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/AVvXsEg_uLMSmotN_3M-aXenFlTNkZRaoLxdCEfxLMmy0Hp8vYWuyjZfhNBC10eD8eImaZLPatvItE4ByYcgkX3UY_l4gsWFQem_94Ex1AStdSpUg6F3XYG1FvJOruxTXEiRxgyt8Tt-7gb3_dma/s320/DSC_0053.JPG" width="212" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLOw6GMD3focPwDNEHE1-_AdN30oVL5jU0R_pMkVXVEd9IwbGI_g_oSaR0AyanCbM0XQ4dOhbesdB8yp6A7ewkaZprNSdqMFy2zQjRwARGGGFfRHWN0hKgl_mC7RLDiOIGgamcOYjP17rA/s1600/DSC_0054.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLOw6GMD3focPwDNEHE1-_AdN30oVL5jU0R_pMkVXVEd9IwbGI_g_oSaR0AyanCbM0XQ4dOhbesdB8yp6A7ewkaZprNSdqMFy2zQjRwARGGGFfRHWN0hKgl_mC7RLDiOIGgamcOYjP17rA/s320/DSC_0054.JPG" width="320" /></a><br />
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<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/AVvXsEhnplYviLJMW31jLP3pqZpNlRVhW01KjOq8wPzW6b3kwpiH3o0LMrEmDAZXVc0H-eMYGCZjZSxCYcqTK58ZKK4rNibkflHDv1gufIyuIZgIX9fYRXEWYWzMphOlwbaf6hvZohyZizYYDFSh/s1600/DSC_0144.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnplYviLJMW31jLP3pqZpNlRVhW01KjOq8wPzW6b3kwpiH3o0LMrEmDAZXVc0H-eMYGCZjZSxCYcqTK58ZKK4rNibkflHDv1gufIyuIZgIX9fYRXEWYWzMphOlwbaf6hvZohyZizYYDFSh/s320/DSC_0144.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Singing</td></tr>
</tbody></table>
<table 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/AVvXsEgj9tHTyGwMkPsPtPxRSIZe-0nyyzEv4DjmujhH0-Z94jloZf9RyP3XWU1rDRvmUZfog_hHNXbOKaf1vzBdFvJr0FfNMeHabH4AiDDZ7DaQqQ-5Cp2vG6vd7S4Pycu26HYBPw_RHWP_vIcV/s1600/DSC_0148.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj9tHTyGwMkPsPtPxRSIZe-0nyyzEv4DjmujhH0-Z94jloZf9RyP3XWU1rDRvmUZfog_hHNXbOKaf1vzBdFvJr0FfNMeHabH4AiDDZ7DaQqQ-5Cp2vG6vd7S4Pycu26HYBPw_RHWP_vIcV/s320/DSC_0148.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dancing</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimVzCpOs1DXd4bE4rB9I7VfV7lmX3OmZ3a2ViKzNZCEhyphenhyphenrc1hfaBoqC9C2meJGC-DGqQ_MXtAlhHR1gjbzKW8gyN6-VKyx3bRGoKDkksUSazyCjuFV5_0wDymeTRlxh6BcysIA5H_1N_Q3/s320/DSC_0254.JPG" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Boggy Creek Boys</td></tr>
</tbody></table>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQK4VclnrAeRAvbjtpgHLyZc1r-E5Q-NCiOhS1MBXutw6I6KIZUM1UcEGECsknwPRcRrvKCmMpGTY-RC2hvs_22ccLwBGUI2SrEU7frHQTuY_WjJy9_IVa29FRSUmewkF8h9nFviLMYRop/s1600/DSC_0250.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQK4VclnrAeRAvbjtpgHLyZc1r-E5Q-NCiOhS1MBXutw6I6KIZUM1UcEGECsknwPRcRrvKCmMpGTY-RC2hvs_22ccLwBGUI2SrEU7frHQTuY_WjJy9_IVa29FRSUmewkF8h9nFviLMYRop/s320/DSC_0250.JPG" width="212" /></a>Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com1tag:blogger.com,1999:blog-8989830041824716140.post-88333540640936022622016-02-04T18:10:00.000-08:002016-02-04T18:25:00.396-08:00Post-Op Report…Back on His Feet<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomq-KfR_sqfDYQJRNzAsZHxSbfY409lzlSeoU2FHr1rP6RmlYgVXiEE8s-tehr6Tp4228uUtBxQy4EDK6fePinOCVSQ3hTZsdna4qoWkRkJYjJsXDymQQ_m6SVeXu52OBCpKoM2qlR3Nt/s1600/20151119_083002.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black; font-family: Arial, Helvetica, sans-serif;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomq-KfR_sqfDYQJRNzAsZHxSbfY409lzlSeoU2FHr1rP6RmlYgVXiEE8s-tehr6Tp4228uUtBxQy4EDK6fePinOCVSQ3hTZsdna4qoWkRkJYjJsXDymQQ_m6SVeXu52OBCpKoM2qlR3Nt/s320/20151119_083002.jpg" width="320" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 107%;">Since November, I have felt like I have been functioning
with heartache and moving in slow motion while the world around me whirls on in it's constant motion.</span><span style="line-height: 107%;">
</span><span style="line-height: 107%;">I finally feel strong enough to share this piece of my heart.</span><span style="line-height: 107%;"> <i>(If you get sick to your stomach easy, don't read on...but this is what Parker endured and now lives with...it is real and painful.)</i></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;"><br /></span></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihyphenhyphenIEudRScoHM93xsrPMmgrjxp1NQ9SyGex7WHI04_YNvo0Z5fif3SQNB7LHK5CUEobdm_ebWAStYjugJ6zZWDXly5ua1JTM3yHCXTr808z34goA9B4iNyMvEQBAizNNLagavyb9XxpjmS/s1600/20151121_125238.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black; font-family: Arial, Helvetica, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihyphenhyphenIEudRScoHM93xsrPMmgrjxp1NQ9SyGex7WHI04_YNvo0Z5fif3SQNB7LHK5CUEobdm_ebWAStYjugJ6zZWDXly5ua1JTM3yHCXTr808z34goA9B4iNyMvEQBAizNNLagavyb9XxpjmS/s320/20151121_125238.jpg" width="180" /></span></a><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 107%;">Parker has been in such a fight during these past 3
months. He had his “surgery re-do” on
his left foot. We had no idea how much
more extensive this surgery was going to be in comparison to his previous
bi-lateral surgery that was done in March.
The surgeon had to restructure and realign his foot, ankle and
tibia. This meant bone turning, ligament
and tendon tightening and lengthening, pinning bones once again, and inserting
THREE titanium screws to fuse his foot into place. The medical terminology for his surgery: </span><span style="font-family: Arial, sans-serif;"><span style="line-height: 17.12px;">Subtalar fusion (</span></span><span style="background-color: white;">joint between talus bone and calcaneus bone is removed and joint surfaces are fixed together to decrease pain and improved function)</span><span style="font-family: Arial, sans-serif;"><span style="line-height: 17.12px;"> with calcaneal osteotomy (</span></span><span style="background-color: white; line-height: 18.2px;"><span style="font-family: Arial, Helvetica, sans-serif;">cutting the heel bone and shifting it to correct deformity</span></span><span style="background-color: white; line-height: 18.2px;">)</span><span style="font-family: Arial, sans-serif;"><span style="line-height: 17.12px;">. </span></span><span style="line-height: 107%;"> He endured a splinted cast (which adhered to
his skin due to the blood and took 30 minutes just to remove), then a regular cast, then a boot cast with bone
stimulators, and now he has a brace.</span></span><br />
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;">Just this last week, he has finally begun taking steps
again. He is so happy to be on his feet
again. Of course, his first few days of being able to stand, he
way over did it. He even danced
some. A tearful moment. Then he went into a JA flare. Another tearful moment.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCOlLM3YFNoAOC026H8G5dKC5Q7amT-yCmuIzNaVq7T8vZ3tLWm5LakK8RnVjWkYDfGZhicMIDfd2td6I78InT27fz0AFdA5HoTBpBPPM5wuVp77aNsr8L_l-3qxMIkEhHGbal1upr_p0D/s1600/20151217_150427.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: black; font-family: Arial, Helvetica, sans-serif;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCOlLM3YFNoAOC026H8G5dKC5Q7amT-yCmuIzNaVq7T8vZ3tLWm5LakK8RnVjWkYDfGZhicMIDfd2td6I78InT27fz0AFdA5HoTBpBPPM5wuVp77aNsr8L_l-3qxMIkEhHGbal1upr_p0D/s400/20151217_150427.jpg" width="400" /></span></a><span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;">These past three months we have seen him in more pain than
I thought possible. Week three through week
eight were the absolute worst. He is
quite glad that now physical therapy (PT) can begin. He was going to start PT this week, but
yesterday we had to take him to the doc and they had us take him to the ER, where we spent the entire day/evening. There was concern that he had pericardial effusion again. He was having pain with breathing. Such intense pain that it woke him that
night. His D-dimer blood labs were
elevated which we found out could mean a blood clot. After many labs, an EKG, x-rays, an
echo-cardiogram, and a lung CT… he was cleared to go home to sleep in his own
cozy beds. Thank goodness all the tests were
ok.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj18q85UYJ0GAaNEHMveHzhbuKGKT2jIaLMCPAJ0veL2Vu2f4A2sH7FShFbPBFTJjmyuikSrX9v8W7HdTyf1RzQj5Rji4Anibavhn42rkw0UfF-RsooC_DsNWS-Fov_EB9m44Pd-e8Qkt2l/s1600/20151217_142909.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: black; font-family: Arial, Helvetica, sans-serif;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj18q85UYJ0GAaNEHMveHzhbuKGKT2jIaLMCPAJ0veL2Vu2f4A2sH7FShFbPBFTJjmyuikSrX9v8W7HdTyf1RzQj5Rji4Anibavhn42rkw0UfF-RsooC_DsNWS-Fov_EB9m44Pd-e8Qkt2l/s320/20151217_142909.jpg" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;">A few days prior to Parker’s surgery, a film crew came to video
his pre-op appointment and our family to honor Parker at the Arthritis
Foundation’s Night of Champions. Logan
went to the event in New Orleans to speak on behalf of his brother. The event was the day after Parker’s surgery.
Below you will see the video that the AF made to honor Parker. Parker is
forever our champion. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; line-height: 107%;"><a href="https://www.youtube.com/watch?v=MaDhldXe7PQ">https://www.youtube.com/watch?v=MaDhldXe7PQ</a><o:p></o:p></span></div>
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Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-24512435694098566222015-12-30T08:39:00.000-08:002015-12-30T08:42:58.806-08:00JA Lessons Learned<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">Being a mother is truly a gift. This statement rings true for many…however,
being a mother of a child with a chronic life-threatening illness is a gift
that awards me with such deep teachings and gratitude for life and I want to
share in my lessons learned.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I enjoy teaching so very much. During my 10 years in a preschool classroom, teaching
young ones with multiple disabilities, I always came home counting my blessings. I was so grateful that I had two healthy
beautiful boys, especially since it was uncertain I could even have
children. Both boys are my little
miracles. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Later, when I started working at that University, I was so
wide-eyed and excited that I would be continuing my career as a teacher of
teachers. Daily, I marveled at what amazing
teachers exist in this world…yet it was always the children that I learned the
most from. Recently, I have been doing
much work coaching in classrooms. There are
so many young children with difficulties and those difficulties are quite the
challenge for many adults. I have been
blessed with understanding the perspective of little ones and helping adults see
things from their points of view. But I
am just a lens of sorts, bringing clarity …assisting adults to see things that
were always there to see…<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">As an educator, teaching comes naturally …lessons are what we
plan… but as a mother of two children with
juvenile arthritis, one with chronic serious issues, I have learned much deeper
lessons. These lessons are certainly not
chosen and I most definitely didn’t look for them, but now I can clearly see
them. When Parker was diagnosed, I asked
many questions, read many medical journals and even text books (yes, I ordered
rheumatology text books…it’s what an “educator” does). I researched so much that I started to
re-read what I had already read…looking for answers and trying to understand as
much as I could. And yes, I learned much…much
about treatment, disease, options… Then,
of course, there were some things I read that made me cry to the point of
exhaustion. And on the flip side, I even
read about “cures” that made me laugh (…like, did you know gin soaked raisins
can cure rheumatoid arthritis and at the car dealership you can get joint juice
to ease the pain…); sometimes you have to laugh…<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">But the real lessons come with experiences. Some lessons are painful. JA has taught me who my real friends are and
are not…and that in every walk of life there are mean people… and even when you
try to do “right”, it can turn very very wrong. But JA has also taught me that mean people
might be processing tough stuff and to
love them through it…and what might feel wrong to some, might be very right for
us. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">And my JA lens has shown me and my
entire family that prayers full of love, acts filled with kindness, and joyful
simplicity are amazing and to receive such gifts is truly life’s lessons.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I know that other mothers and fathers and siblings of
children with chronic illness endure incredibly difficult journeys too. I watch it every single day… countless hours of worry, reveals faith…
endless treatments, needle sticks, procedures, bring hope… pain, shows strength…
mysteries, give patience… physical barriers and road blocks show us alternate
paths… but the greatest lesson of all is
LOVE. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I can see the love in doctors’ and nurses’ eyes as they tell
us things we certainly don’t want to hear.
I also see love in their eyes when they celebrate the simplest of
accomplishments. I feel love from our
friends and family with their notes, encouragement, acts of kindness, and
prayers. But the love between Michael,
Logan, Parker and I …as we simply sit together, not saying a word, just being
together…well that is true deep love and a lesson I gladly learn.</span><o:p></o:p></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-e1h-EcRpB8FP7bUKLU_qq4j476ESvYCgHOoL_ET3PAO8aiScSgxhobzXjv2S-hFDoS6K4mHP4Ztm6li1EFbqpU7W5z3W_3zGHQS_mettKkgzY8uTWda6CAg4L4surphadQVdZ5k122CE/s1600/20151210_201838.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-e1h-EcRpB8FP7bUKLU_qq4j476ESvYCgHOoL_ET3PAO8aiScSgxhobzXjv2S-hFDoS6K4mHP4Ztm6li1EFbqpU7W5z3W_3zGHQS_mettKkgzY8uTWda6CAg4L4surphadQVdZ5k122CE/s640/20151210_201838.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We are so grateful to Armanis Restaurant at the Tampa Hyatt for doing a wine tree fundraiser for Parker's Purple Playas. </td></tr>
</tbody></table>
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Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-28465754042423201982015-12-08T16:15:00.000-08:002015-12-08T16:15:09.632-08:00The CURE for Chronic Illnesses...by Logan Lentini<i>Today, Logan posted this on Facebook and I think it is worthy of a blog post...</i><br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">Incurable, it’s a word that some of us are far too familiar with, and quite frankly I am tired of hearing it. Obviously there are countless diseases that are incurable; diabetes, arthritis, lupus, fibromyalgia, cystic fibrosis, and many cancers, currently have no cure, just to name a few. For many chronic illnesses, symptoms are manageable, but in other cases the symptoms can be lethal. </span><br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">When health professionals verbalize that a disease is incurable it can do one of two thing</span><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">s. From a patient’s perspective, hearing that word can potentially eliminate all aspects of normalcy from their life. To a non-patient, hearing that something is incurable can stir up a whirlwind of emotions, especially if the non-patient personally knows a patient battling chronic illness. However, saying that chronic illnesses are incurable is simply false. Though there may not currently be a cure for a specific disease, that doesn’t mean that there is no cure at all. </span><br />
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<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">This is amazing news; if you think about it, there is, in theory, a cure for every chronic illness known to man. All it takes for a cure to be discovered is the right person conducting the right research. The cure could lie in alternative medicine, or genetics, or somewhere else, but there is a cure. We are on the right track as a society to finding these cures too; many chronic illnesses are now manageable through pharmaceuticals, and various other methods. Knowing how to manage the symptoms of chronic illnesses is the first step to understanding them on a cellular level, which in turn will eventually lead to the discovery of a cure. </span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">Now I’m not saying that every chronic illness will have a known cure over night, or even over the next ten years, but I do believe that in this century we will find the answers that we are looking for. There is a solution to every problem, and there are cures to chronic illnesses. As long as we stay hopeful, and advocate for ourselves, the right person will eventually come to the table and make the discovery that we have been waiting for; the discovery that will change the world.</span>Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com0tag:blogger.com,1999:blog-8989830041824716140.post-4321892637371929732015-11-02T14:08:00.000-08:002015-11-02T14:08:17.079-08:00Difficult Decisions…<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">For many years I have felt a bit obsessed because my
constant prayer has been for Parker’s healing…But I am not quite sure when that
prayer shifted to: I just want what is best for him and for him to experience
joy in his life.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">It was probably a little
more than a year ago.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">I think it shifted
when I tried to begin understanding what his precious life’s purpose may
be.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">The struggles that this child has faced have been plenty
and as a mom, each struggle is incredibly difficult to witness. However, I will never give up on him; I will
forever be his biggest cheerleader; and I will always stand beside him with
pride and love. I know some feel that we
have made some wrong choices and by being public with our story, we have made
ourselves vulnerable to judgement. But
what is right for him and our family is simply that, right for us.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">The decisions made are carefully weighed given all of our
circumstances and options. Ultimately,
we have to trust and have faith that we are on the right path for us at this
point in time. <o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">So, in trying to decide what to do about school, we did
indeed consider all our options. For
goodness sake, we have already tried hospital homebound, virtual school, traditional
school, charter school, part-time school, and combinations of all these. We know our legal rights; we know his IEP
gives him the right to a least restrictive and appropriate free education; we
know that we could continue to pursue…but what we also know is that Parker is
fighting for his life and let me tell you…it is completely and utterly heart
wrenching for us and totally exhausting for him.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">We took much care in explaining to Parker all of his
educational options. What is most
important to him is one, friendships and two, getting better/stronger. We met with the school and they have agreed
to allow Parker to continue to go to lunch with his friends at school, to
attend events, and to volunteer. He will
also continue with one of the clubs he has been involved with and be a part of
the community. In addition, he is going
to pursue his GED and then go to our community college. This will allow him to focus on his medical
needs and not have as much educational stress.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYfEdQbTUqbVxlCDOZ-Fj0EBDtzeB9xUeme3YWELhqmHiCTaCb8Iv5PiQXdLKzXsdbiTHvmBdsJGfn4xti2tSjz1SpJNLTSlY3d3vfFSxLeRNPWfq0ogQxlZ5WtPV5oC0hk4frHr24_qLx/s1600/GardenPeople.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYfEdQbTUqbVxlCDOZ-Fj0EBDtzeB9xUeme3YWELhqmHiCTaCb8Iv5PiQXdLKzXsdbiTHvmBdsJGfn4xti2tSjz1SpJNLTSlY3d3vfFSxLeRNPWfq0ogQxlZ5WtPV5oC0hk4frHr24_qLx/s400/GardenPeople.png" width="400" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">This decision wasn’t easy for him. In addition to thinking about his education,
he is also trying to deal with many medical decisions. He will be getting his foot fused in about
two weeks and once we over this first hurdle, then we will focus on the
rest. So, I ask that you simply pray and
continue to shower our sweet son with love and we will continue to hope.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">And to all who have reached out, we are so very grateful
you are part of our lives.<o:p></o:p></span></div>
Lentini Familyhttp://www.blogger.com/profile/02298681320327634181noreply@blogger.com4