tag:blogger.com,1999:blog-17246532661876090042023-06-17T10:18:20.916-05:00Growing with Kerstin: Raising a child with "special needs"Striving to be the best mom to my daughter. No disAbility will get in the way of her living a happy life! Extremely THANKFUL!
Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.comBlogger200125tag:blogger.com,1999:blog-1724653266187609004.post-10952079338718315842022-02-26T13:28:00.002-06:002022-02-26T13:40:23.652-06:00Just be her Mom? <div><br /></div><div>Thinking back to a social media post I shared about being a mom
and all of the duties that come with that title. The post was about all of my
day to day duties and everything that goes into raising and caring for my
daughter who has significant special health care needs. I thought about how I,
as her mom, complete daily tasks that several professionals would do
individually in another setting. Examples: nursing to handle medicines and tube
feedings; respiratory therapist to handle breathing treatments, suction, cough
assist and chest percussion therapies; a physical or occupational therapist
would handle stretches, massages, and other movements that help with muscle tone
and spasticity, her scheduler managing numerous appointments to doctors and
specialists. Those are just the medical side. She still needs the things that
all human beings need and want: shelter, cleanliness, entertainment and most of
all love. <div><br /></div><div>When you are a single parent and doing all of those things daily; just
being her mom gets lost! I find myself “on the clock” more than ever. It all
seems to be heightened since living through a pandemic for almost two years now.
There is no escape from or break in the daily routine. No days to sneak away to
the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying
people watching and listening while browsing the clothing and accessories. Yes,
her momma got to enjoy the treat of a Frappuccino from Starbucks and checking
out the clearance endcaps. Those things are so dearly missed as we continue in
our pursuit of keeping a young lady who has multiple disabilities, one being
Restricted Lung Disease (RLD) safe and as healthy as possible.
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Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with
barely any break in the cyclical nature of each day. We are not going many
places, as I mentioned earlier, to break the pattern often besides doctor
appointments, drug store runs and grocery drive ups. There are no vacations or
holidays. Even on those days, you, mom-caregiver are always “on the clock”. We
are not making visits to the homes of family or friends and there are rarely
visitors to our home, for the obvious safety and health concerns. The things we
are doing for “fun” still keep us safe at home: new movies when they are
available to stream or yard meet-ups with family when the weather is nice and
health permits. </div><div><br /></div><div>Just be her mom? In order to do that safely, effectively, and
efficiently, mom has to think of herself as well. The things that I do to pamper
and comfort my daughter are some of the very things that I need for myself. This
is why self-care, self-love and mental outlets are so critically important. As
parents of children with special health care and disabilities, we are often
reminded of the quote, “You cannot pour from an empty cup.” There are so many
days when we are on our hamster wheel, running on fumes and seemingly going
nowhere, we must remember that in order to be top notch we have to me caring and
considerate of our own well-being.
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The act of looking after the care of another who is either sick of disabled is
“caregiving”. While providing care for my daughter is expected and required,
doing it non-stop and as a single parent can be tasking. Exhaustion is real and
it is not just physical. Burnout can set in and cause a parent/caregiver to be
less alert. This weariness can potentially be harmful for the person we are
caring for when their needs are not met in the proper manner.</div><div><br /></div><div> Just be her mom
means that I am taking care of myself. Yes, enjoying the journey of growing
knowledge of what it takes to care for my daughter and all of her needs.
Advocating for her care, health, inclusion, rights and more. In doing all of
those things for her, I have to do them for myself as well. Take breaks, read
some fiction, stream a series or two, get outside to look up at the sky, feel
the breeze and the sun on your face, grab that macchiato or latte or
Frappuccino. Do something you love! Talk to someone, professional, if you feel
that is what you need. Take care of YOU, holistically. Keep that quote, close to
your heart and in memory; keep your cup as full as possible, that is the best
way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..
</div></div>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-47791599596440424192021-08-11T11:39:00.005-05:002021-08-11T11:39:47.429-05:00Breakthrough <div><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 31px; font-stretch: normal; line-height: normal; margin: 0px 0px 3px;"><span class="s1" style="font-weight: bold;">Breakthrough</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 31px; font-stretch: normal; line-height: normal; margin: 0px 0px 3px;"><span class="s1" style="font-weight: bold;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 31px; font-stretch: normal; line-height: normal; margin: 0px 0px 3px;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-iksNJX4EvG8/YRP9JqigBFI/AAAAAAAACTo/tz3qC8AGDJUYUtMxPE8ZMrXd1JMgJpiLwCLcBGAsYHQ/s488/AD8530B2-938A-4874-A8C7-79DBC7D85808.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="412" data-original-width="488" height="270" src="https://1.bp.blogspot.com/-iksNJX4EvG8/YRP9JqigBFI/AAAAAAAACTo/tz3qC8AGDJUYUtMxPE8ZMrXd1JMgJpiLwCLcBGAsYHQ/s320/AD8530B2-938A-4874-A8C7-79DBC7D85808.jpeg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Google search image</td></tr></tbody></table><br /><span class="s1" style="font-weight: bold;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Lately, that’s been a buzz word when it comes to COVID,the vaccines and breakthrough infections. <span class="Apple-converted-space"> </span>I used to associate that word with religion and the advancement of desires and “answered prayers”. <span class="Apple-converted-space"> </span>The meaning of breakthrough is any significant or sudden advance, development, achievement, or increase, as in scientific knowledge (dictionary dot com). <span class="Apple-converted-space"> </span>More recently on my adult life, I have associated <span class="Apple-converted-space"> </span>the word with my daughter having “breakthrough seizures”. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Kerstin has a vagal/vagus nerve stimulator or VNS; she is also prescribed 4 different seizure medications. <span class="Apple-converted-space"> </span>Before the VNS was implanted she was on meds only and had breakthrough seizures and some would get really bad; talking full tonic-clonic or grand mal seizures. <span class="Apple-converted-space"> </span>We were advised by her neurologist that the VNS would be a good way to help reduce her seizures without adding more medications that would have her so sedated that she would be sleepy most of the time and not very alert. <span class="Apple-converted-space"> </span>Yes! <span class="Apple-converted-space"> </span>We wanted that option and Kerstin was implanted in March of 2019. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Kerstin’s seizure activity has gone down tremendously. <span class="Apple-converted-space"> </span>However, she still had seizure activity and from time to time, seizure activity becomes visible. <span class="Apple-converted-space"> </span>They have not turned to a grand mal. <span class="Apple-converted-space"> </span>Kerstin’s last grand mal was in the parking lot of a Walmart; February 2019, one month before her VNS surgery. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Breakthroughs happen. <span class="Apple-converted-space"> </span>Have they been has horrible as pre-VNS? <span class="Apple-converted-space"> </span>No! Thankfully, no! Should I stop her meds or have the stimulator removed because she still has very sporadic breakthrough seizures? <span class="Apple-converted-space"> </span>Hell no! <span class="Apple-converted-space"> </span>The breakthrough seizures don’t have my child convulsing then leave her sleep or out of it for up to 24 hours afterwards. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Back to that breakthrough definition; scientific knowledge tells me that there is a possibility of seizures but, they are not like those before Kerstin was medicated and implanted - had a layer of protection. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">These days, layers of protection are critically important to me for my family. <span class="Apple-converted-space"> </span>I have a child with a very complex medical history and protecting her is important to me. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><br /></span></p><p class="p4" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s3">😷</span><span class="s2"> </span><span class="s3">💉</span><span class="s2"> </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">#MaskedAndVaccinated</span></p></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background-color: transparent; background: transparent; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-81013087207243340852021-04-26T17:52:00.000-05:002021-04-26T17:52:12.386-05:00<div><p class="MsoNormal"><b><span style="line-height: 107%;"><span style="font-size: medium;">COVID-19– Fears of navigating a post
mask mandate era and re-openings with a child with a complex medical history.<o:p></o:p></span></span></b></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;">This past year
of living through a global pandemic has been difficult for many people in many
ways. Not having the usual contact and
personal intimate interactions with others can become very lonely over time. We are human beings and the connections to
other people are what keep us going, provides support when it is most needed
and provides comfort. When we are having
a hard day, or when we have had a really good one, we instinctually want to
gather with family and friends to share the news. Gathering, is one of the things we have been
repeatedly told NOT to do in the midst of the coronavirus pandemic. <o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;">Watching the
news, hearing reports on the dangers of the virus and how it affects the lungs,
I became immediately attuned to learning what I could about this COVID-19. I needed to know what could be done to keep
my daughter safe and healthy as well as myself.
My daughter, Kerstin spent weeks spread over months in and out of the
Special Care and Pulmonary Units of Children’s Hospital of Alabama in the late
Summer and Fall of 2019 then again in 2020 with respiratory illnesses. During these stays, Kerstin required and was
placed on High Flow Oxygen for several days at a time for each of the four
separate stays. I don’t want to spend days
and nights inpatient watching my child be hooked up to numerous machines and
needing that higher flow of oxygen anymore.
We just spent about a week of her on what they call an “at home regimen”
and was told that if she continued to have low oxygen saturations, she would
need to be seen at the hospital. Thankfully
she got through that and has not been on supplemental oxygen in 5 days now. <o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;">As we
continue to traverse through the COVID pandemic and vaccines have rolled out
and some have been halted for further research; the world seems to be
completely done with everything “coronavirus”, “pandemic”, “virus”, “mask”, “social
distance”, “physical distance” and “safer at home”. Re-entering the world is not the same for
everyone! There is no going back to “normal”
or “business as usual” for many people.
Like grief, going back into the world with a deadly virus still
ravaging, mask mandates ending (ended here in Alabama) and, a low percentage of
adults being vaccinated (again, AL), it will look and feel differently for
everyone. Some people are eager to go
mask-less, some cannot be vaccinated for medical reason, some will not be
vaccinated for whatever reason(s).
Whatever the reason, I will not judge them and would hope that my
decisions to be vaccinated, to remain distant and masked are for the health and
safety Kerstin and other people considered “vulnerable”.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;">As we
continue to push through to the other side of this virus, please continue to listen
to sincere and trusted medical professionals, respect the personal spaces of
others, wash your hands and wear your mask.
We will! <o:p></o:p></span></span></p><p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"><br /></span></span></p><p class="MsoNormal"><span style="line-height: 107%;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-q0me1qt5dDo/YIdDuSWnArI/AAAAAAAACPw/Kuc0QXZTCC0sBFQEyQ5849BRhiA5dwWogCLcBGAsYHQ/s4032/IMG-4114.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://1.bp.blogspot.com/-q0me1qt5dDo/YIdDuSWnArI/AAAAAAAACPw/Kuc0QXZTCC0sBFQEyQ5849BRhiA5dwWogCLcBGAsYHQ/s320/IMG-4114.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Kerstin, wearing her mask!</td></tr></tbody></table><br /><span style="font-size: medium;"><br /></span></span></p>
<p align="center" class="MsoNormal" style="text-align: center;"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p>
<p align="center" class="MsoNormal" style="text-align: center;"><span style="line-height: 107%;"><span style="font-size: medium;">“You really can change the world if
you care enough.” –Marian Wright Edelman<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-size: medium;"> </span></span></p></div><div><br /></div><div><br /></div><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-11196781092349398912020-02-08T20:51:00.001-06:002020-02-08T20:51:45.284-06:00Now and Then<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://1.bp.blogspot.com/-IOlhvEkQOck/Xj9won6VX2I/AAAAAAAAB9Y/NNrlvIP0p_4icv7sGUV-yA2PkhBDp7oTACLcBGAsYHQ/s1600/Kerstin%2B%2BMatissa%2BSelects001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://1.bp.blogspot.com/-IOlhvEkQOck/Xj9won6VX2I/AAAAAAAAB9Y/NNrlvIP0p_4icv7sGUV-yA2PkhBDp7oTACLcBGAsYHQ/s320/Kerstin%2B%2BMatissa%2BSelects001.jpg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo by: <a href="https://www.judybarrancophotography.com/" target="_blank">Judy Barranco</a></td></tr>
</tbody></table>
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<span style="font-size: 12.0pt; line-height: 107%;">Recently, I
have been really thinking about the now and then. Now and then meaning life and death. I cannot lie, it is deeply horrifying to me
to even phantom and it bothers me just as deep to think about. Recently, I saw a post shared on Facebook
from <i>Mombie Needs Coffee</i> titled “<a href="https://www.mombieneedscoffee.com/will-i-die-before-my-special-needs-child-or-will-he-die-before-me-both-scenarios-equally-terrify-me.html?fbclid=IwAR1wKv86zo8XOJzYW8_jh0-2ZvR2xy-VuaocvtyCmRNdnpOjUc1mGLglZg4" target="_blank">Will I Die Before My Special NeedsChild…</a>” </span> It made me go back and read my own postings
from 2014: “<a href="https://cpaware.blogspot.com/2014/05/life-expectancydo-you-wonder-do-you-ask.html" target="_blank">Life Expectancy…Do you wonder? Do you ask?</a>” and “<a href="https://cpaware.blogspot.com/2014/07/not-all-moms-share-same-secrets.html" target="_blank">Not all moms share the same secrets</a>”. About a year after those posts, my mom passed
away suddenly. I remember standing in
the waiting room at the hospital after she was gone thinking, “How could I
explain this to Kerstin?” “Will she
understand that she would no longer see her Granny?” Even when we are fondly looking at pictures
of mom, I wonder what she’s thinking, seeing her in pictures and never seeing
her in person even when we have family gatherings. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By now we have all seen in the news recently the coverage of
the helicopter crash that killed Kobe Bryant, his daughter and 7 others. They were parents, they died with their
children and even left children and families behind. My thoughts go out to all the victims and
their families. This tragic event got me
to thinking once again about now and then.
Hearing of the parents onboard, dying with one of their children. I thought of them having partners or spouses
and possibly other children at home.
That meant that those left behind had another to look after the other
children. It also made me think about
single parenting; what if one of these people were a single parent and left a
child to be cared by others. Or, if they had been single with only one child
and their child was onboard that flight too.
<o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
I do not know if it is natural to think like I have for so
many times, that whenever that times comes, I do not want to be left without
Kerstin and I do not want her to be left without me. Sometimes, I just keep selfishly
thinking that the two of us dying at the same time would be better. Better for who? For
that to happen, it would probably be sudden and tragic. That ending would be one that is sure to devastate
our family and friends. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
You see, I cannot imagine a life without Kerstin and I cannot
imagine her life without me. Will she be
cared for the way she is used to? Will
others have the patience and understanding that I have grown to have. She needs around the clock care for all her
daily living needs. I will not lie; it
is no easy journey. <o:p></o:p></div>
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<div class="MsoNormal">
I know that this is not something “typical” families think
of on a regular basis if, at all. They
may not even prepare beyond wills and life insurance in the event of their own
demise. Raising a child with special
needs leaves parents thinking of the daily to dos of doctors, specialists,
school, therapies then there is their life insurance and that of the
child, wills, guardianship, power of attorney
and quite possibly some things that I cannot even think of right now. <o:p></o:p></div>
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<div class="MsoNormal">
We want to make sure that they enjoy and are good and kind beings.
We do all that all that we can to make
sure our children are loved and cared for. Life is for living- the easy and
hard. We must navigate the hills, curves
and valleys as we approach them. <o:p></o:p></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-hPOaiit5Uvk/Xj9wdoczKVI/AAAAAAAAB9c/FG8waWSKe9o5-I11F0FYQGMahJIofVSewCEwYBhgL/s1600/Kerstin%2B%2BMatissa%2BSelects002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1260" height="320" src="https://1.bp.blogspot.com/-hPOaiit5Uvk/Xj9wdoczKVI/AAAAAAAAB9c/FG8waWSKe9o5-I11F0FYQGMahJIofVSewCEwYBhgL/s320/Kerstin%2B%2BMatissa%2BSelects002.jpg" width="251" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo by: <a href="https://www.judybarrancophotography.com/" target="_blank">Judy Barranco</a></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<br />
<br />
More to come...<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-33336382766307717832019-10-28T19:58:00.001-05:002019-10-28T19:58:24.491-05:00Breathing!<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Calibri, sans-serif;">It has been a long time, a long time. I become a
contributor with and have had a couple of articles be shared by The Mighty on
platforms like Yahoo! Lifestyle. My published works "<a href="https://www.yahoo.com/lifestyle/children-ask-whats-wrong-daughter-191126718.html" target="_blank">When Children Ask What's 'Wrong' With My Daughter Who Has
Cerebral Palsy</a>" and "<a href="https://themighty.com/2019/08/back-to-school-families-kids-disabilities/" target="_blank">How Back to School Is Different for Families of Kids With
Disabilities</a>" have been widely shared. Kerstin and I were
featured on the cover of Montgomery Parents (Now River Region Parents) magazine
where I was interviewed for the monthly Mom-To-Mom article. The photo
shoot we had for the magazine cover blew my daughter's mind. She was a
diva for days following. Then at the Special Needs Expo hosted by the
magazine, Kerstin got the "royal treatment" and "celebrity
status". Really big 'diva-tude'!<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Calibri, sans-serif;"><br /></span></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://1.bp.blogspot.com/-Rbil6pqNBAQ/XbeKWghejKI/AAAAAAAAB5I/lVoEBqIhJfM_dV3l0xYqGF0NHQCCxRvUQCEwYBhgL/s1600/image.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-Rbil6pqNBAQ/XbeKWghejKI/AAAAAAAAB5I/lVoEBqIhJfM_dV3l0xYqGF0NHQCCxRvUQCEwYBhgL/s320/image.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hot off the presses! Kerstin's a cover girl...so is her momma</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: Calibri, sans-serif;"> </span><br />
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">It
has not been all smooth sailing. As I am writing now, I am thinking about
an appointment I skipped out on for Kerstin today because of exhaustion; physically,
emotionally, and mentally. It is not easy or cheap to take that 2-hour
trip several times per month to various appointments at Children's. This
would be the third appointment since she was discharged on October 1st.
Discharged? Yes! Now, let’s go back to the last full week of September,
the week following the Expo hosted by Montgomery Parents Magazine.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">Expo
day! Turns out the weather was not too hot; Kerstin was in a good mood;
heading to work with mommy and gain some praises for being the celebrity cover
girl. Things went well. Kerstin even managed to get a Target run in
that beautiful Saturday. I made a few connections through my work, got to
meet many families like our own; those raising a child or youth with a special
health care need. She had just completed a round of a steroid burst 5
days prior and seemed to have been feeling better. The weekend was
almost over and late that Sunday night Kerstin was not feeling well
again. <o:p></o:p></span></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://1.bp.blogspot.com/-1szRr5GgyR0/XbeKSkM2wKI/AAAAAAAAB4Y/r6FXzpbL9-47oyFD9UtM1nm--APvVNRHwCEwYBhgL/s1600/image%2B%25282%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://1.bp.blogspot.com/-1szRr5GgyR0/XbeKSkM2wKI/AAAAAAAAB4Y/r6FXzpbL9-47oyFD9UtM1nm--APvVNRHwCEwYBhgL/s320/image%2B%25282%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At work with her momma</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-GvHEjONcxqI/XbeKUIyOStI/AAAAAAAAB4s/NLpTCsa9BdcKWcC7kBCbHpMd1z4pRn9NgCEwYBhgL/s1600/image%2B%25283%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-GvHEjONcxqI/XbeKUIyOStI/AAAAAAAAB4s/NLpTCsa9BdcKWcC7kBCbHpMd1z4pRn9NgCEwYBhgL/s320/image%2B%25283%2529.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cover girl and Aunt Audrey</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-bAs0YwjZpro/XbeKUc8tKZI/AAAAAAAAB4w/-LXXc0DGFEAE4LGhLky9U56LdRMcTbs3wCEwYBhgL/s1600/image%2B%25284%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="369" height="320" src="https://1.bp.blogspot.com/-bAs0YwjZpro/XbeKUc8tKZI/AAAAAAAAB4w/-LXXc0DGFEAE4LGhLky9U56LdRMcTbs3wCEwYBhgL/s320/image%2B%25284%2529.jpg" width="184" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cover girl with Guardian Angel Carol</td></tr>
</tbody></table>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">I
am still giving Kerstin her breathing treatments; I mean I am taking her puffs
with her wherever she goes. I made sure to follow the schedule with the
bursts she had just completed and continuing to follow her daily medicine
regimen. Why was she not feeling well again? By Wednesday, Kerstin
was not feeling well at all! It was scary. I sent my sisters a
message letting them know that she was not feeling well at all. My
youngest sister Joan is a nurse and immediately she asked me to relay to her
what was going on, asking how Kerstin looked. She commanded that I get a
video of Kerstin to her ASAP. She called after getting the video saying
call her doctors but take her to an ED (emergency department) right then!
She asked what location I was going to and that she was coming as soon as she
got her kids from school. Another sister, Regina, left work early and
said she was going to ride with us. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-UhMS5eFaDSw/XbeKQJAYVvI/AAAAAAAAB5Y/j-8hhuL6jLcCcuTjkOiMTMqZQ5u8HmkfACEwYBhgL/s1600/image%2B%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-UhMS5eFaDSw/XbeKQJAYVvI/AAAAAAAAB5Y/j-8hhuL6jLcCcuTjkOiMTMqZQ5u8HmkfACEwYBhgL/s320/image%2B%25281%2529.jpg" width="240" /></a></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">In
this video, Kerstin had nasal flaring, and her chest was caving with each
breath. We got to the ED and in no time they had her in back, IV started,
labs cultures and so all going and even ordered an X-ray. Shortly after,
the doctor came in to tell me that she was going to have to admit Kerstin
because she had pneumonia. When I tell you all that it seemed like
so much was coming at me all at once. yet, the staff at this ED was so
patient and caring. The doctor asked if I wanted Kerstin to be
transferred to Children's since her doctor and all specialists were in one
location. I said yes, it made since to her and to me. However, since
we were at a smaller ED, they would have to transport her since the IV was in
and she was a difficult stick. It felt like the earth had just
disappeared from beneath me. Transport her? How?<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">Kerstin
had never been in an ambulance! Her personal vehicles have always transported
her when needed. This could not happen with an IV in her and fluids
going. This warm Wednesday night was a night of firsts. Kerstin was
in the back of an ambulance with an attending medic with me up front with the
other medic on our way to Children's ED. We get there and things move
fast again; more labs, more breathing treatments a clearer X-ray. They
told us that Kerstin would be going to the Pulmonary Unit on the 10th
floor. Though, the respiratory therapist was in the room and seemed to never
leave when he did, he came back with one of the doctors. They said it
would take a little while longer for her room to be prepped in Special
Care! Another first, she has never been in the <a href="https://www.childrensal.org/special-care" target="_blank">Special Care
Unit</a>, she spent one night and full day in the PICU after her <a href="https://cpaware.blogspot.com/2013/11/long-overdue-and-much-to-be-said.html" target="_blank">spinal fusion</a> back in 2013. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">The
respiratory therapist working with Kerstin was an older gentleman, he was calm
in his work and explanation of Special Care. He told me that they would
need to start Kerstin on a high flow cannula. What is that? Another
first! Kerstin's O2 levels were barely in the 80s, and she also had high heart
rates. She was struggling to breath but, she was literally giving it her
all. With the high flow oxygen started, doctors and nurses continued
cycling in getting forms completed, medicines entered and all prep for a
hospital stay. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-OxsXynPCWGE/XbeKVa29J7I/AAAAAAAAB5k/YMOm7SSSxUQHg_i_qjkL8dzi_Dl1tmx5wCEwYBhgL/s1600/image%2B%25287%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-OxsXynPCWGE/XbeKVa29J7I/AAAAAAAAB5k/YMOm7SSSxUQHg_i_qjkL8dzi_Dl1tmx5wCEwYBhgL/s320/image%2B%25287%2529.jpg" width="240" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-zu_8dcsU-_s/XbeKUxLSx9I/AAAAAAAAB5o/4pfyxglUFsY-nlDXXfRXpDEbnKeaiCExgCEwYBhgL/s1600/image%2B%25286%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-zu_8dcsU-_s/XbeKUxLSx9I/AAAAAAAAB5o/4pfyxglUFsY-nlDXXfRXpDEbnKeaiCExgCEwYBhgL/s320/image%2B%25286%2529.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Very first time getting IPV</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Duh6COchMKQ/XbeKUoYsiEI/AAAAAAAAB54/7P81IAA07c0Zl0LqCgZd1_qrj8cNFWFOwCEwYBhgL/s1600/image%2B%25285%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-Duh6COchMKQ/XbeKUoYsiEI/AAAAAAAAB54/7P81IAA07c0Zl0LqCgZd1_qrj8cNFWFOwCEwYBhgL/s320/image%2B%25285%2529.jpg" width="240" /></a></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">After
we got up to the Special Care Unit, it was busy all over again. This time
the room was full when she arrived. Nurses were in there with a bed
scale, they had towels, gowns, pillows and linens in place; it was real.
We were going to be here for a while. A new respiratory therapist was
there informing me that Kerstin would be getting breathing treatments and CPT
every three hours! The breathing treatments would alternate between her
getting them through the high flow or this new way...IPV. Another moment
of, "I can't believe that Kerstin is being hooked up to all of these
different machines." The blue hoses took my mind back to the only
other time I had seen them on anyone, my mom right before she passed away in
2015. At that time, she was the only person I had ever seen in person,
intubated and with the now familiar tubing and hoses. This time, my
daughter had them, not intubated but a different form of oxygen and a new
ventilation therapy. This was very hard to ascertain.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">What
is High flow cannula oxygen?: <span style="background: white;">High
flow nasal cannula (HFNC) is a relatively new non-invasive ventilation therapy
that seems to be well tolerated in children…Until more evidence from randomized
studies is available, HFNC may be used as a supplementary form of respiratory
support in children, but with a critical approach regarding effect and safety,
particularly when operated outside of a [pediatric] intensive care unit </span>(<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4942966/" target="_blank">2016,
NCBI</a>).<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-MYB2fG6aWD0/XbeKXAFaByI/AAAAAAAAB5c/wdzhgbX9sdIdT4YdZKqMhzzInUDU1z1DACEwYBhgL/s1600/image.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="886" data-original-width="630" height="320" src="https://1.bp.blogspot.com/-MYB2fG6aWD0/XbeKXAFaByI/AAAAAAAAB5c/wdzhgbX9sdIdT4YdZKqMhzzInUDU1z1DACEwYBhgL/s320/image.png" width="227" /></a></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;">What
is Intrapulmonary Percussive Ventilator (IPV)? <span style="background: white;">The intrapulmonary percussive ventilator (IPV) is a pneumatic positive
pressure device used to move mucus.</span><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: Calibri, sans-serif;">The IPV sends small, fast bursts of air that open the
airways. These small bursts of air also loosen and free mucus from airway
walls. A continuous mist helps make mucus less sticky. The high flow rate
encourages deep breathing, which helps air to get around and behind trapped
mucus (<a href="https://www.cincinnatichildrens.org/health/i/ipv" target="_blank">2019, Cincinnati Children's</a>).</span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-1tsLkpM5Dv4/XbeKQDpr6oI/AAAAAAAAB5g/xvcUK1isJjw7qHhK_7MxmagRIWxmjp27wCEwYBhgL/s1600/image%2B%252811%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="552" data-original-width="394" height="320" src="https://1.bp.blogspot.com/-1tsLkpM5Dv4/XbeKQDpr6oI/AAAAAAAAB5g/xvcUK1isJjw7qHhK_7MxmagRIWxmjp27wCEwYBhgL/s320/image%2B%252811%2529.jpg" width="227" /></a></div>
<br />
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: Calibri, sans-serif;">After being settled into the Special Care Unit on this first
night, every three hours of respiratory therapists began. The first round
of IPV was difficult to watch and Kerstin did not like it at all. The bursts
of air being forced into her lungs was unusual. Seeing this process
really highlighted the fact that Kerstin was indeed very ill and having a hard
time simply breathing! Her lungs already restricted from the curve of her
scoliosis curve were now significantly causing her to be uncomfortable and not
breathing well. Kerstin would go on to spend 3 days in Special Care
getting these treatments every 3 hours then eventually every 4 and even come
off oxygen right before being able to move to the Pulmonary Unit. </span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Calibri, sans-serif;"> <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://1.bp.blogspot.com/-a2J5rYewm-A/XbeKWP2F1jI/AAAAAAAAB50/MDafoo-QdFYFAZumnBID6kR1ueqgce0IgCEwYBhgL/s1600/image%2B%25288%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-a2J5rYewm-A/XbeKWP2F1jI/AAAAAAAAB50/MDafoo-QdFYFAZumnBID6kR1ueqgce0IgCEwYBhgL/s320/image%2B%25288%2529.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kerstin sitting up; having a good day in Special Care. Right before the not so good first night in Pulmonary. </td></tr>
</tbody></table>
</span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: Calibri, sans-serif;">The first night in Pulmonary did not go so well, she had been
doing so good and then suddenly her O2 was low again and she even had to go
back on oxygen but only for a short time. After a few days off oxygen
Missy was able to come home. Her doctor said to continue her breathing
treatments every 4 hours for the next couple of days and then go to as
needed. It had been several days before I had enough nerves to stop
the regimen. When I did, Kerstin was not ready so, it was back to every 4 hours.</span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: Calibri, sans-serif;">Just a few days later we would be back going to Children's
for her follow up with her general medicine and pulmonary doctors.
Pulling into the parking garage, Kerstin's mood instantly changed, I tried to
be reassuring to my love that she was there for 2 appointments and that she
would be going home afterwards. We get in to the first one and during the
check of her vitals she is spiking a temperature but O2 and heart rate numbers
were good. She also had some rattling sounds. Not again! The
doctor we were seeing first mentioned being glad that she would be going to
pulmonary afterwards. <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://1.bp.blogspot.com/-WQ4LFrNLWuE/XbeKQHvvHiI/AAAAAAAAB5U/6yXBOdCSD3cOKRL93NDUxb-MKlc3ZhmswCEwYBhgL/s1600/image%2B%252810%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-WQ4LFrNLWuE/XbeKQHvvHiI/AAAAAAAAB5U/6yXBOdCSD3cOKRL93NDUxb-MKlc3ZhmswCEwYBhgL/s320/image%2B%252810%2529.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No idea we would hear she still wasn't at her best. </td></tr>
</tbody></table>
</span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: Calibri, sans-serif;">We traverse the campus a couple blocks to the next building
and get checked in with the pulmonologist. They check her vitals again, and I
kid you not, an hour in between the first stop and now, Kerstin's temp has
continued to climb. We get in her exam room and the nurse comes with a
concerned looked on her face and begins her questions and examination which
includes another temp check. They are wanting to give her Tylenol or Motrin
whichever I preferred first. In no time, her doctor is in to examine and listen
to her. He looks concerned! I feel like I want to cry right at that
moment; I know the looks. He tells me that he wants to get some more
X-rays because he was a little concerned with the temp and the diminished lung
sounds!</span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
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<span style="background: white; font-family: Calibri, sans-serif;">Up to x-rays and back. I can hear the doctors and
nurses in the workstation area just outside of Kerstin's room. I remember
telling my sister that they were talking about Kerstin. I sent my other
sisters a message saying that I thought she had pneumonia, again. Doctor
comes in and said that after comparing her images, she had only a serious
respiratory illness during her hospital stay but now had secondary
pneumonia. He said that she did not look sick (she did not, my girl had
been smiling, listening to music and watch tv & videos), but the temp and
imagines suggested she needed more time to recover. He said he would not
admit her at that moment but if she seemed to feel any worse, her temp
continued or anything, she needed to come back there and be admitted. She
was started on a steroid and other meds that we picked up from the in-house
pharmacy. </span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-TorS8qxUexo/XbeKWDmyusI/AAAAAAAAB5o/xmNkTtV2jhgqtCo6u_3q6O4HXyfMLQMFwCEwYBhgL/s1600/image%2B%25289%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-TorS8qxUexo/XbeKWDmyusI/AAAAAAAAB5o/xmNkTtV2jhgqtCo6u_3q6O4HXyfMLQMFwCEwYBhgL/s320/image%2B%25289%2529.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling through it all. </td></tr>
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<span style="background: white; font-family: Calibri, sans-serif;">Two weeks later, Kerstin is still getting breathing
treatments every 4 hours, still monitoring her temps because this past Sunday
she kept spiking 100.7 and higher for several hours. I also continue with the dreaded suction when
she is "rattling" and needs to cough. She has another follow up
scheduled in a few days. It is not clear when my girl will be getting her
feeding tube changed; that was schedule for the week she was admitted but her doctor
said no. This procedure requires Kerstin to be under anesthesia; he
said that would also cause slower breathing and he did not want that right
now. He suggested pushing it out to November. Guess what November
is already jammed with follow ups for the follow up, neuro-motor/physical
medicine for the orthopedic suggested Botox, dentist appointment as well as
neurology for Epilepsy follow up and VNS interrogation. </span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
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<span style="background: white; font-family: Calibri, sans-serif;">So, when will the tube be changed? When will we be
disappearing in a movie theater with her blankets to enjoy something
animated? When will we be leaving home without an appointment on the
calendar? When will we be going to Target so my girl can get her a $5 tee
and $7 leggings while her momma grabs some Starbucks and we roam the aisles
looking for clearance whatnots while saying "hello" to all of her
'co-workers'? We are overdue for fun!<o:p></o:p></span></div>
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<span style="background: white; font-family: Calibri, sans-serif;">I repeat, we are overdue for fun! It
is late on a Saturday night as I’m putting finishing touches to this post and
Kerstin has had her 10 p.m. breathing treatment, temp check but, as I check her
put her pulse oximeter on her O2 is fluctuating well below her low of 90. She is dipping down to 83 and 84. There would be so much beeping in a hospital setting. I just pray we can keep her healthy and not
at Children’s of Alabama before her scheduled appointment! </span><span style="font-family: Calibri, sans-serif;"><o:p></o:p></span></div>
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<a href="https://1.bp.blogspot.com/-L7J8PFGHHPc/XbeKRf5ciaI/AAAAAAAAB5g/uDaR6Vza8rcPzXrRWC4eRjP6XLDfu-s0QCEwYBhgL/s1600/image%2B%252815%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-L7J8PFGHHPc/XbeKRf5ciaI/AAAAAAAAB5g/uDaR6Vza8rcPzXrRWC4eRjP6XLDfu-s0QCEwYBhgL/s320/image%2B%252815%2529.jpg" width="240" /></a></div>
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<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">It is Monday, midmorning, and I
continue to put finishing touches on this post; decided to leave the previous paragraph in here to show our journey.
Instead of in my living room, I am now in the parent corner of Kerstin’s
Special Care Unit room at Children’s of Alabama. We are back, twice in a month. Kerstin ha been place on a rather high liter
level of oxygen with a little e step down this morning. It has been a very busy few weeks and from
Saturday night until this very moment, it has been busy. There will be more updates later. Look for them on Facebook and Instagram. <o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">More IPV</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Trying to get a midmorning nap. </td></tr>
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<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">More to come…<o:p></o:p></span></div>
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com1tag:blogger.com,1999:blog-1724653266187609004.post-18726574770115019932019-04-02T19:39:00.005-05:002019-04-02T19:42:16.233-05:00Seizures and VNS When I say that I am growing in many aspects each and every day on this journey called life and "Growing With Kerstin"! As she grows physically, I am also growing in knowledge in ways of taking care of my child with "complex medical needs", "special healthcare needs", "a disability" yet, the best title of all is simply, Kerstin, my moon and stars, my sunshine! Yesterday, we added a few more crucial steps on our journey.<br />
<br />
Late February and March were jammed packed months. Appointments, planning, pre-op and surgery. April is keeping the same momentum. But, back to March. On March 12th, as you know from my last post <a href="https://cpaware.blogspot.com/2019/03/vns-placement.html" target="_blank">here</a>, Kerstin had her VNS implanted. The surgery went well, she is recovering nicely, she has now has more <a href="https://cpaware.blogspot.com/2014/10/scars-of-strength.html" target="_blank">"Scars of Strength"</a>, and they have healed very quickly when compared to previous surgeries. I think that is because none of the VNS incision were as large or as deep. Still, she had some tenderness for a few days afterward but that is all gone now and our journey is moving along.<br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-TfZaiELDHdI/XKPy62ajlaI/AAAAAAAABxk/gKNGtX3DvAs9ZZy6KV5yA59QmGqHD2o6ACLcBGAs/s1600/57409646942--2D72CF1B-9091-4362-9C94-6CEC879F772B.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-TfZaiELDHdI/XKPy62ajlaI/AAAAAAAABxk/gKNGtX3DvAs9ZZy6KV5yA59QmGqHD2o6ACLcBGAs/s320/57409646942--2D72CF1B-9091-4362-9C94-6CEC879F772B.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pep talk and kisses before she heads off to surgery. </td></tr>
</tbody></table>
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April Fools Day 2019 was spent in traffic and then at Children's of Alabama for a full neuro day! Traffic on a Monday into Birmingham, AL...horrific. We already had a 2 hour drive there but Monday's turned into a 3 hour voyage. Remind this mom, no more Monday morning appointments! Mid-mornings and afternoons, maybe. Anyway, once there, down to her neurosurgeon. He was pleased with her healing and we are discharged from him unless/until there are device concerns or at the time for a new battery.<br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-t12oIsamaXg/XKPzzgU3KEI/AAAAAAAABxw/Hd0xf7G84xQepMGZI-Wugk0OmQSchkMqQCLcBGAs/s1600/IMG-6094.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-t12oIsamaXg/XKPzzgU3KEI/AAAAAAAABxw/Hd0xf7G84xQepMGZI-Wugk0OmQSchkMqQCLcBGAs/s320/IMG-6094.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bandages removed; three days after surgery. </td></tr>
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Jn0k0PNdKx8/XKPzzIGBTXI/AAAAAAAABxs/UvHkc9CZAp08kpbf-I5sDesb3zo6ewSWwCLcBGAs/s1600/IMG-6336.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-Jn0k0PNdKx8/XKPzzIGBTXI/AAAAAAAABxs/UvHkc9CZAp08kpbf-I5sDesb3zo6ewSWwCLcBGAs/s320/IMG-6336.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two weeks post VNS placement. </td></tr>
</tbody></table>
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Back up to her neurology to see the nurse practitioner (first time meeting her and it was good meeting) and neurologist. This was where the bulk of the day was spent. No complaints at all because things were required to benefit Kerstin. Educational for this mom to again, benefit Kerstin. They are needed. I truly believe this is one of the things that will prove to be a saving grace on this Seizure/ Epilepsy journey. On the lowest "<a href="https://us.livanova.cyberonics.com/children" target="_blank">milliamp</a>" (new word alert) or pulse settings, of her VNS, we are already seeing changes in her seizures. After implantation, we went ahead and started proactive swipes, to get her acclimated to the pulses from a swipe as well as my getting used to swiping the magnet over the stimulator.<br />
<br />
About nine days after VNS implantation, Kerstin had visible seizure activity, shortly after I had given her a proactive swipe. So, I did another one to stop this seizure from increasing and approximately one minute later the activity was subsiding. Last week however, Kerstin's brain decided to test the system. Again shortly after her mid morning swipe, she started to have a seizure, one swipe, one minute later shes still involved. Another swipe another minute, still involved. This one was visibly increasing by the minute with twitches so hard, they could be seen in her neck (never happened before) and felt all the way to her hairline. Yet, after four swipes and four minutes they start to subside before Diastat was needed. <br />
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On the day of surgery, Kerstin's device was set at a lower end of pulses; her neurologist has a goal he wants her to get to, depending on how her brain and body reacts to pulses on various levels. At this appointment, her milliamps were amped up a bit. Again, my champion did well with things minor increases. Her next increase will be done remotely! The wonders of science, technology and medicine!! We will be back in office in a few weeks for additional talks and another increase to her milliamps.<br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-PAPIZGxk_Ls/XKP_NqTU7ZI/AAAAAAAAByI/663FGzYxB2AB7lrLJIwST4lIzD68As9rQCEwYBhgL/s1600/IMG-6454.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://4.bp.blogspot.com/-PAPIZGxk_Ls/XKP_NqTU7ZI/AAAAAAAAByI/663FGzYxB2AB7lrLJIwST4lIzD68As9rQCEwYBhgL/s320/IMG-6454.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">VNS Interrogation</td></tr>
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-1qdxO32Pap0/XKP_Vh1DMcI/AAAAAAAAByQ/UVQbRyYKNEQVBUbwMyQ2fcQlTqArOo1zgCEwYBhgL/s1600/IMG-6456.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-1qdxO32Pap0/XKP_Vh1DMcI/AAAAAAAAByQ/UVQbRyYKNEQVBUbwMyQ2fcQlTqArOo1zgCEwYBhgL/s320/IMG-6456.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kerstin's VNS profile.</td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-NDeOqQ0poUA/XKP_Ps5vVbI/AAAAAAAAByM/RwwI3T1l3Yo5_XIxttklmPhSPRKRh3H4QCEwYBhgL/s1600/IMG-6455.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-NDeOqQ0poUA/XKP_Ps5vVbI/AAAAAAAAByM/RwwI3T1l3Yo5_XIxttklmPhSPRKRh3H4QCEwYBhgL/s320/IMG-6455.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alert and attentive! </td></tr>
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Kerstin's neurologist and nurse practitioner are happy she has the device in place. I am already happy that we went ahead with this advancement and seizure treatment that does not include more medicine. Her nurse practitioner told me to look at the VNS as a sitter, keeping an eye on Kerstin even when I cannot. The device will kick in with pulses when it notices an increase in her heart rate, often signs of strenuous activity and heart rates increase during seizure activity. Also, it will notice those absent/staring seizures I may miss or think of as her just staring.<br />
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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://4.bp.blogspot.com/-9gpWWL_ttBk/XKP_XhRRFxI/AAAAAAAAByg/R4wLKzCzUi8rNJquziY87iUdIWz_x_TcgCEwYBhgL/s1600/IMG-6447.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-9gpWWL_ttBk/XKP_XhRRFxI/AAAAAAAAByg/R4wLKzCzUi8rNJquziY87iUdIWz_x_TcgCEwYBhgL/s320/IMG-6447.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My very patient, patient. Entertainment in between appointments. </td></tr>
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We are now equipped with a little more knowledge than the days and weeks before. We also have a magnet hooked on her wheelchair (with her wherever she goes) and on the stand near her bed. She has her i.d. cards, one in her wallet and I have the other. We are once again, making some very important strides on this journey...Growing With Kerstin.<br />
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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://2.bp.blogspot.com/-v29-owh5Irw/XKP-peRrtCI/AAAAAAAAByA/3kLm8gzjArQAZ93FLFsvyIpWK2EFUUXBACLcBGAs/s1600/IMG-6460.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-v29-owh5Irw/XKP-peRrtCI/AAAAAAAAByA/3kLm8gzjArQAZ93FLFsvyIpWK2EFUUXBACLcBGAs/s320/IMG-6460.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Always, always happy to go in and come out on the same day!</td></tr>
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More to come,<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-60992418340560290672019-03-11T22:11:00.002-05:002019-03-11T22:11:33.671-05:00VNS Placement <span style="font-size: large;"><br /></span>
<span style="font-size: large;">Yes, another procedure or surgery. Like her GJ tube placement and replacement, this is not considered a major and typically an outpatient procedure. However, with increased pulmonary concerns, we have been told to "be prepared to stay overnight". We are steadfast and trusting the bags will not be needed. It is the night before surgery and Kerstin has had her Dial bath, and the chlorhexidine gluconate (CHG) (preoperative skin prep wipes) have been used. They are indeed sticky!</span><br />
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<tr><td><a href="https://2.bp.blogspot.com/-pcQHcNlw240/XIcgfWak1oI/AAAAAAAABwg/Jn8SCeg7NiA3eXS17md9wJP-IXX--godgCLcBGAs/s1600/IMG-5693.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-pcQHcNlw240/XIcgfWak1oI/AAAAAAAABwg/Jn8SCeg7NiA3eXS17md9wJP-IXX--godgCLcBGAs/s320/IMG-5693.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">CHG wipes</td></tr>
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<span style="font-size: large;">So, <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" target="_blank">what is VNS</a>? Vagus Nerve Stimulation is called a "pacemaker for the brain", it will send mild electrical pulses or energy to the brain by way of the vagus nerve. The pulses will act as stimulants to cut down the intensity of seizures or preventing them altogether. The VNS is an add on to her epilepsy care regimen and will eventually help her be able to come down on the high dosages of medicines she is currently on yet, still having seizures with some of them being very intense, like she had just a few weeks ago. </span><br />
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<span style="font-size: large;">Kerstin currently has prescriptions for 4 different seizure medications. In addition to other medicines she takes; she takes 1 med twice a day, another at bedtime only, then one she takes 3 times a day and one in case of a seizure lasting longer than 5 minutes. Sounds confusing? Sounds busy? Hectic? It takes some scheduling and work to keep up with the schedule. Overtime, these widely available and approved medicines can cause other health concerns, they take a tole on muscles (which is already a part of her life with her Cerebral Palsy diagnosis), they also affect alertness/awareness. </span><br />
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<span style="font-size: large;">Outside of cannabis/cannabinoid oils/ marijuana, VNS is a none medicine treatment to help with seizures. No, I have not ruled out cannabis treatments for Kerstin if they seem to be needed. But, for now, we prepare for VNS placement. Look for updates from Children's of Alabama on Facebook and Instagram - <a href="https://www.facebook.com/GrowingWithKerstin/" target="_blank">Growing With Kerstin</a>! </span><br />
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<tr><td><a href="https://2.bp.blogspot.com/-fAGZ-xRk_PI/XIcg-kFr0wI/AAAAAAAABwo/r6bMA_L1M30H_UK0308gpFcEyvf8XoFHACLcBGAs/s1600/IMG-5969.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-fAGZ-xRk_PI/XIcg-kFr0wI/AAAAAAAABwo/r6bMA_L1M30H_UK0308gpFcEyvf8XoFHACLcBGAs/s320/IMG-5969.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">I think I could find it with my eyes closed. </td></tr>
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<span style="font-size: large;">More to come...</span><br />
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px;" /></a><br />
<br />
<a href="https://cpaware.blogspot.com/2018/06/seizure-control-options.html" target="_blank">Seizure Control Options</a><br />
<a href="https://cpaware.blogspot.com/2018/07/seizure-control-options-take-2.html" target="_blank">Seizure Control Options Take 2</a><br />
<a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" target="_blank">Vagus Nerve Stimulation (VNS)</a><br />
<span style="font-size: large;"><a href="https://us.livanova.cyberonics.com/" target="_blank">VNS Therapy </a></span><br />
<br />
<br />
<br />
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-30167126240041346602019-02-12T21:35:00.000-06:002019-02-12T21:35:23.477-06:00“What’s wrong with her?” “She’s sick.”<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: inherit;">Raising a child with special health
care needs comes with many challenges.
There are some really high highs and also some really low lows. As parents we love our children and we see
them go through so many changes as they grow and deal with the things that come
with their varying diagnoses. We want
our children to enjoy life, be involved in their communities. We want them to be able to do things with and
like their peers. You know, things like,
going to the movies, shopping, out to eat, etc…
We don’t want them to be seen as wrong or sick!<o:p></o:p></span></span></div>
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<a href="https://2.bp.blogspot.com/-UFK-13ELNX8/XGOQKVgXvsI/AAAAAAAABvI/HRabLD8p4TMJ0Nl3fg_xszLAKdAfEt5QwCLcBGAs/s1600/Kerstin%2BRIPPLES%2Bblog2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1423" data-original-width="1080" height="320" src="https://2.bp.blogspot.com/-UFK-13ELNX8/XGOQKVgXvsI/AAAAAAAABvI/HRabLD8p4TMJ0Nl3fg_xszLAKdAfEt5QwCLcBGAs/s320/Kerstin%2BRIPPLES%2Bblog2.jpg" width="242" /></a></div>
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<span style="line-height: 107%;"><span style="font-family: inherit;">I cannot count the times we have been
having a good day, on outings, Target included and a child sees Kerstin in her
wheelchair and they stare and will ask their parent(s), “What’s wrong with her?”
“Why is she in that chair?” Too many
times I hear the parent whisper, “She’s <a href="https://www.dictionary.com/browse/sick">sick</a>.” NO! And that is exactly what I have started to
say without explanation. When I overhear
that answer, I just politely say “No.”
When a parent tells their child that there’s nothing wrong, and to
speak, we usually spark a conversation.
They are receptive and seem to want their child to be as well. It warms my heart, and I am sure the hearts of
other parents of children with special needs as well, when parents of children
without those needs are open and want to make sure their child speaks and
understands diversity. <o:p></o:p></span></span></div>
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<span style="line-height: 107%;"><span style="font-family: inherit;">Having a disability or special health
care needs does not equate to sickness. Cerebral
Palsy is not a sickness, it is not contagious.
Epilepsy is not contagious. Yes,
our children get sick, so does everyone.
When a child/adult has a disability, it usually takes them longer to
overcome general illnesses. Using a
wheelchair, wearing glasses, AFOs, neck supports and other assistance in NO WAY
means the person is sick. When Kerstin
is sick, she definitely will not be in a restaurant, a movie theater or her
beloved Target. That is something we
just do not do. The only time she is
outside of our home while sick is to go to the doctor or unfortunately when she
is hospitalized. <o:p></o:p></span></span></div>
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<a href="https://2.bp.blogspot.com/-CR9vSIrXOVI/XGOQULLzeWI/AAAAAAAABvM/Cmb7nhFrYAgm0q_BnWSDBH7f4L1ZkIldACLcBGAs/s1600/Kerstin%2Bmothers%2Bday%2B2018.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="957" data-original-width="640" height="320" src="https://2.bp.blogspot.com/-CR9vSIrXOVI/XGOQULLzeWI/AAAAAAAABvM/Cmb7nhFrYAgm0q_BnWSDBH7f4L1ZkIldACLcBGAs/s320/Kerstin%2Bmothers%2Bday%2B2018.jpg" width="214" /></a></div>
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<span style="line-height: 107%;"><span style="font-family: inherit;">So, when you see a family out enjoying
their day just as you are and your child asks, “What’s wrong with her (him)?” “Why is s(he) in that wheelchair?” Be sure to
tell them, that nothing is wrong, she needs the chair to get around and go
places, say “hi”! </span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
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<a href="https://4.bp.blogspot.com/-iCiwsJZ0M4g/XGOPaLPKmdI/AAAAAAAABvA/Nckf9jjMCDwjoTFrEGbK8gm7Aut4ISxkACKgBGAs/s1600/IMG_2334.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="817" data-original-width="817" height="320" src="https://4.bp.blogspot.com/-iCiwsJZ0M4g/XGOPaLPKmdI/AAAAAAAABvA/Nckf9jjMCDwjoTFrEGbK8gm7Aut4ISxkACKgBGAs/s320/IMG_2334.jpg" width="320" /></a></div>
<br />
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-50961299332533198432018-10-02T08:52:00.000-05:002018-10-02T08:52:22.543-05:00I Get it!<span style="font-size: large;"> This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo. I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day. So, not only was I working, I was able to get a little respite, much needed. As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"> Regina kept me abreast on what was going on throughout the day. When the day was done, I called to chat with them and see if anything was needed. During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver. She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else. Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours. She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else. </span><br />
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<a href="https://3.bp.blogspot.com/-BWyXkoz33Ug/W7LcNaTmbYI/AAAAAAAABqE/p4EKfrj0YWUrzMKZsqU7Q8kgaxR_zUW_wCLcBGAs/s1600/I%2BGet%2BIt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="295" data-original-width="300" src="https://3.bp.blogspot.com/-BWyXkoz33Ug/W7LcNaTmbYI/AAAAAAAABqE/p4EKfrj0YWUrzMKZsqU7Q8kgaxR_zUW_wCLcBGAs/s1600/I%2BGet%2BIt.jpg" /></a></div>
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<span style="font-size: large;"> "I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off! I cannot explain to you how overwhelming it was to hear those words. As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard. Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten. It is understood. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"> We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around. How bossy is that? I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend. </span><br />
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<span style="font-size: large;"> Let a family member or friend know that you really get it. "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way! I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. </span><br />
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<span style="font-size: large;">More to come...</span><br />
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-83315616536028200642018-07-25T15:45:00.002-05:002018-07-25T15:57:32.270-05:00Seizure Control Options Take 2<span style="font-size: large;"> Last month, I wrote "<a href="http://cpaware.blogspot.com/2018/06/seizure-control-options.html" target="_blank">Seizure Control Options</a>" for Kerstin and the fact that she is back to seeing her neurologist every few months instead of the annual follow up appointments we has gotten to a few years back. Over time, with the intensity of her seizure activity ramping up again, we went to every 6 months now, her last few visits had been like every 4 months with lots of calls and updates in between. Now, it has been a mere two months and within the next few days, we will be having our first/ consultation appointment with a neurosurgeon at Children's of Alabama. I am sure that 2018 will close out with lots of follow up appointments. </span><br />
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<a href="https://3.bp.blogspot.com/-n_DSMZWXTI4/W1jVC4S10xI/AAAAAAAABpI/gAhdt8PT-wwr_GQPEryvMNK96WfC9R7mQCLcBGAs/s1600/vagus-nerve-picture-location.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="511" data-original-width="732" height="223" src="https://3.bp.blogspot.com/-n_DSMZWXTI4/W1jVC4S10xI/AAAAAAAABpI/gAhdt8PT-wwr_GQPEryvMNK96WfC9R7mQCLcBGAs/s320/vagus-nerve-picture-location.jpg" width="320" /></a></div>
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<span style="font-size: large;"> To talk more about Vagus Nerve Stimulation Therapy or VNS Therapy. What is the vagus nerve? </span><span style="font-size: large;">What is VNS/ VNS therapy? </span><span style="font-size: large;">How does it work? Will it stop seizures? So many questions. </span><br />
<span style="font-size: large;">The vagus nerve according to <a href="https://www.britannica.com/science/vagus-nerve" target="_blank">Britannica</a>, is also called <b>X</b> cranial nerve or <b>10th</b> cranial nerve, which is the longest and most complex of the cranial nerves. "The vagus nerve runs from the brain through the face and thorax to the abdomen." (Britannica.com) </span><br />
<span style="font-size: large;">Vagus Nerve Stimulation (VNS) is used to prevent seizures. Gillette Children's Specialty Healthcare describes VNS as, "Vagus nerve stimulation (VNS) prevents seizures by sending regular, mild pulses of electrical energy to the brain along the vagus nerve in the neck."<br />The therapy or stimulation works when a stimulation device that is similar to a pacemaker sends electrical pulses. "The VNS therapy system is surgically placed under the skin on the chest wall. A wire runs from the stimulator to the vagus nerve, which is part of the autonomic nervous system. The autonomic nervous system controls involuntary body functions, such as heart rate" (Gillette Children's).</span><br />
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<a href="https://3.bp.blogspot.com/-8zSZyvXg8ks/W1jezyPO6lI/AAAAAAAABpU/R3dW4tfgHzs8hcCm_A_UBsm7MFxATPIwACLcBGAs/s1600/IMG_2578.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://3.bp.blogspot.com/-8zSZyvXg8ks/W1jezyPO6lI/AAAAAAAABpU/R3dW4tfgHzs8hcCm_A_UBsm7MFxATPIwACLcBGAs/s320/IMG_2578.JPG" width="320" /></a></div>
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<span style="font-size: large;"> As stated, there has been an uptick in Kerstin's seizure activity for some time now. Her latest was yesterday morning just after she woke for the day. Kerstin is now prescribed three daily seizure meds and one in the case of a seizure lasting longer than five minutes. As with most medicines, they all have side effects as well as long term effects on one's body. A few years back she had to be taken off one because it contributed to an illness that kept her in the <a href="http://cpaware.blogspot.com/2013/11/long-overdue-and-much-to-be-said.html" target="_blank">hospital</a> for weeks. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"> Next week, Kerstin has been scheduled to see a neurosurgeon. We look forward to talking further about VNS therapy as an option for seizure control and hopefully getting Kerstin on lower doses of anti-epileptic/ seizure medications or off of them altogether. An update is coming after the appointment next week. We are on the road to Children's again and two months sooner than anticipated. </span><br />
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<a href="https://3.bp.blogspot.com/-r0Fh5qYPYYk/W1jhFhZbjhI/AAAAAAAABpg/fMfhSuAJ1b8_l8S8sc5bnXI2Tc-QSpIUgCLcBGAs/s1600/childrens%2Bentrance%2Bsign.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="300" data-original-width="253" src="https://3.bp.blogspot.com/-r0Fh5qYPYYk/W1jhFhZbjhI/AAAAAAAABpg/fMfhSuAJ1b8_l8S8sc5bnXI2Tc-QSpIUgCLcBGAs/s1600/childrens%2Bentrance%2Bsign.jpg" /></a></div>
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<span style="font-size: large;">More to come...</span><br />
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<span style="font-size: large;">resources</span><br />
<span style="font-size: large;"><a href="https://us.livanova.cyberonics.com/" target="_blank">VNS Therapy</a>, <a href="https://www.webmd.com/epilepsy/guide/vagus-nerve-stimulation-vns#1" target="_blank">What is Vagus Nerve Stimulation?</a>, <a href="https://www.gillettechildrens.org/conditions-care/vagus-nerve-stimulation" target="_blank">Vagus Nerve Stimulation</a>, <a href="https://www.britannica.com/science/vagus-nerve" target="_blank">Vagus Nerve Anatomy</a></span><br />
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<span style="font-size: large;"><br /></span>
<br />
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-65620921186537994952018-06-12T13:11:00.001-05:002018-06-12T13:11:30.507-05:00Seizure Control Options<span style="font-family: inherit;">Kerstin is back to seeing her neurologist every few months. We had gotten up to annual appointments but with an increase in activity some time back, we had to see him more often. The most recent follow up was last month, May. As with all of her appointments and more specifically the neuro ones, we are equipped with notes as to what kind of seizures she has endured in between appointments. The doctor and staff already knew about some of these episodes because they had been contacted to make them aware of the seriousness of her seizures. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">The May appointment lasted a bit longer than most. There is no complaining about that fact because I would really be a little upset if he rushed in and out of the exam room. We talked over things as they relate to Kerstin, seizure activity, weight gain, possible increase in medicines and even a possible new treatment or new med to add to regimen. The treatment would be to maybe consider Vagus Nerve Stimulation therapy (VNS therapy). What is VNS therapy? "<span style="background-color: white; white-space: pre-wrap;">Vagus Nerve Stimulation (VNS) Therapy is a medical device proven to treat difficult-to-control seizures, also known as drug-resistant epilepsy. The device sends mild pulses through the vagus nerve to areas of the brain known to be associated with seizures" (VNS Therapy Overview)."</span></span><br />
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<span style="font-family: inherit;">Until this appointment, I had never heard of VNS therapy an was unaware of the process of placement or the potential benefits. In the meantime, her neurologist wanted to add a new medicine to hopefully help with Kerstin's <a href="https://www.eisleep.com/sleep-disorders/nocturnal-seizures/" target="_blank">nocturnal</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3469236/" target="_blank">catamenial</a> seizure activity. The new med, <a href="https://en.wikipedia.org/wiki/Phenobarbital" target="_blank">phenobarbital</a>, to be given once daily at night/bedtime. The first thing noticed was that Kerstin was immediately sleeping better and through the night. She even started to sleep later into the next morning but one day when I was not home with her Kerstin slept well into the day, 11:30 a.m. and went to sleep again around 2:30 p.m. This scared me and my sister, who was keeping her for me that day. I called the neurologist and told the intake what was going on and the nurse immediately called back to calm my nerves some. There is an adjustment period to this medicine and it can cause a lot of drowsiness. I was told to watch her over that weekend but if she slept like that again to call immediately.</span></div>
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<span style="font-family: inherit;">Over that weekend, I reached out to a friend to see whether her daughter was on this new med, if she knew someone who was and if she new any families who has VNS therapy. Her daughter is on a different med, one that Kerstin had been taken off of, she knew friends on phenobarbital and said at first they were completely drowsy and she knew friends on VNS and loved it. Now, back to the phenobarbital, Kerstin has continued taking it at night, the drowsiness comes and goes, for the most part she has been sleeping really well at night with very few exceptions. </span></div>
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<span style="font-family: inherit;"><span style="white-space: pre-wrap;">Last month, I was able to get in on a caregiver chat with families that are using VNS therapy and those that have been given this option as an epilepsy treatment. There is another coming up soon, that I may attend. I have also been added to a Facebook caregivers, users and professionals group. VNS is a being highly praised as a way to treat seizures/epilepsy without the use of so many meds or high dosages of anti-</span></span><span style="white-space: pre-wrap;">epileptic</span><span style="font-family: inherit;"><span style="white-space: pre-wrap;"> medications and their long term side-effects. </span></span></div>
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<span style="font-family: inherit;"><span style="white-space: pre-wrap;">So, where will this journey take us? I'm not even sure. I do know that there is a follow up with her neurologist in a few months and a possibility of a consultation with a neurosurgeon around the same time. </span></span></div>
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<span style="font-family: inherit;"><span style="white-space: pre-wrap;">More to come... </span></span></div>
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<a href="https://us.livanova.cyberonics.com/learn-more/about?source=MICROSOFT" target="_blank">VNS Therapy</a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-61188427406222244422018-05-23T16:19:00.002-05:002018-05-23T16:20:41.223-05:00Weight, what?!?<span style="font-size: large;"> The <a href="http://cpaware.blogspot.com/2018/01/reflections-interesting-year.html" target="_blank">latter part of 2017</a> proved to be very busy for us. In October, Kerstin had her g-tube changed to a gj-tube. That was followed by a very unexpected stay in Children's Hospital. However, since October and the continuous feedings she has been on a constant climb in pounds. </span><span style="font-size: large;">For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds. She was healthy and her nutritionist was pleased with her progress. </span><span style="font-size: large;"> </span><br />
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<a href="https://1.bp.blogspot.com/-Imr1eD2R7K4/WwXXStQMNyI/AAAAAAAABl0/LgyQVjgOp_Uz_OhSsDuU7X0BcfJF3Nb6QCLcBGAs/s1600/IMG_2580.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://1.bp.blogspot.com/-Imr1eD2R7K4/WwXXStQMNyI/AAAAAAAABl0/LgyQVjgOp_Uz_OhSsDuU7X0BcfJF3Nb6QCLcBGAs/s320/IMG_2580.JPG" width="320" /></a></div>
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<span style="font-size: large;"> Things were going well until they were not so good. Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia. All of that lead to a few illnesses and hospital stays last year. For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately. </span><br />
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<span style="font-size: large;"> The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline. well over 90+ pounds. Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much. So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. </span><br />
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<span style="font-size: large;"> We will see where these changes take us...</span><br />
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More to come...<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px;" /></a><br />
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<a href="http://cpaware.blogspot.com/2017/10/its-happening-so-quickly.html" target="_blank">It's happening so quickly!</a><br />
<br />Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-87136949854989328942018-05-21T15:40:00.000-05:002018-05-21T15:40:16.372-05:00Epidermal Nevus<span style="font-size: large;"> This year, has been going fairly well however, I have been really bad about updating things here. I have been updating Kerstin's Instagram a lot more. Be sure to following Growing With Kerstin there. </span><br />
<span style="font-size: large;"> Now, I will take us back to August 2016, when I noticed this little spot behind Kerstin's left ear. At first I was thinking maybe her earring had scratched her or the post had stuck her and I immediately started applying an antibiotic ointment to it. It seemed to smooth out some but, later it came back and appeared bigger and no matter what I applied it seemed to keep growing. All while growing, it become more irritating to Kerstin, she did not want it touched in any way, not to have the area cleaned while bathing, not to mistakenly touch it while dressing or anything. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">continuing to grow</td></tr>
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<span style="font-size: large;"> In October of that year, Kerstin had an appointment with a dermatologist that I walked away from still unsettled and wanting more answers</span><span style="font-size: large;">. The appointment just did not seem thorough or complete. There had been cultures (cultivation of microorganisms) done on this area only to come back negative for any types of fungi. So, back in December of 2017 a new medical doctor was added to Kerstin's team and the center of her medical home, a female! Yes, we were enthusiastic about it and she went right to work with us. On a thorough exam of missy, she determined that she would refer her out to another dermatologist. </span><br />
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<span style="font-size: large;"> February 2018, Kerstin had a new appointment with dermatology and it was determined that a biopsy needed to be performed in ordered to know how to properly treat this spot, whatever it may be. Scary thought of this in office procedure where a small plug of her skin would be cut so that it could be properly tested. We have to do things that are oftentimes scary in order to take care of our children. The process included a numbing applicant, that would be in place for 30 to 45 minutes before the cut. Then, post cut, we had to wait another 30 minutes to ensure that the bleeding had stopped before she could leave. </span><br />
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<span style="font-size: large;">The wait! It is so hard to be patient and wait on the results of a skin growth on your child. Then the call comes and the nurse says she is calling from dermatology with biopsy results. Take a deep breath and listen, "<a href="https://ghr.nlm.nih.gov/condition/epidermal-nevus" target="_blank">epidermal nevus</a>". What? A very irritating and itchy skin mole. It may come back but she has been prescribed a skin topical and now she needs to bath with have her hair washed with products that contain ketoconazole as an ingredient. Since February, that nevus has inflamed twice, the cream is applied and it goes away again. Another step on this journey. </span></div>
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<span style="font-size: large;">More to come...</span></div>
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References:<br />
Epidermal nevus. NIH U.S. National Library of Medicine https://ghr.nlm.nih.gov/condition/epidermal-nevusGrowing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-69708337213336440652018-01-04T12:52:00.002-06:002018-01-04T17:21:52.416-06:00Harsh Reminder!<br />
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<span style="font-size: large;">Reminder(s) is defined as "a person or thing that serves to remind", according to dictionary.com. Then what is remind? The same site tells us that remind is to "cause a person to remember". Life does not give us options on how we will be reminded of something, nor do we know when it will happen or whether the reminder is subtle and nice or just harsh! Well, on Wednesday morning we got a not so subtle reminder that Epilepsy/seizure disorder is still a very prevalent part of Kerstin's journey!</span><br />
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<span style="font-size: large;"> The thing about seizures is that they have no time frame, they can suck the joy out of any moment. They can happen in the middle of the day, during a ride from a doctor's appointment, in the middle of the night or even early in the morning, marking the end of a good night's rest. Which is what happened yesterday. Kerstin was suddenly awake at 5:40 a.m. and thrust into seizure activity. With two episodes of cluster seizure, I am so thankful that she did not require medicinal intervention to stop the seizures. </span><br />
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<span style="font-size: large;"> So, what are these cluster seizures/seizure clusters? Clusters are when seizures start and stop. The Epilepsy Foundation states that, "<span style="background-color: white; color: #333333; font-family: "opensansregular";">Seizure clusters are also known as repetitive or serial seizures</span><span style="background-color: white; color: #333333; font-family: "opensansregular";">, with return to baseline between events". How can one truly prepare for that? There really is no comparison for a parent or caregiver tending to a child with special health care needs that cannot tell you that they may be sensing that one is coming (an aura) nor can you truly know what it is like when you have not had a seizure yourself. As recommended, it is good to make notes of the seizure activity: how long it lasts, how many clusters, how long it took to return to usual activity, etc...</span></span><br />
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<span style="font-size: large;"><span style="background-color: white; color: #333333; font-family: "opensansregular";"> To those clusters, in the dark coldness on January 3, 2018; thanks for the harsh reminder. I am reminded to always know what to look for and to continue learning and growing on this journey of Growing With Kerstin. </span></span><br />
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<span style="font-size: large;"><span style="background-color: white; color: #333333; font-family: "opensansregular";">More to come...</span></span><br />
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<span style="font-size: medium;"><span style="background-color: white; color: #333333; font-family: "opensansregular";">Reference</span></span><br />
<span style="color: #333333; font-family: opensansregular;"><span style="background-color: white;"><a href="https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/seizure-clusters" target="_blank">Epilepsy Foundation: Seizure Clusters </a></span></span><br />
<span style="color: #333333; font-family: opensansregular;">Dictionary.com<a href="http://www.dictionary.com/" target="_blank">http://www.dictionary.com/</a></span><br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-63328643877259856002018-01-01T14:07:00.000-06:002018-01-01T14:07:04.817-06:00Reflections: An Interesting Year<span style="font-size: large;"> 2017 has come to an end. This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new. We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys. January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure. Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. </span><br />
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<span style="font-size: large;"> I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days. Thankfully, most of them have been in and out days. However, in July and again in November, we did not. The year was well, appointments were also going well. Kerstin had a good year. Then there was July, Kerstin got really sick with a summer cold that just would not seem to break. She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia. So, an antibiotic was started. Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before. He thought it would be best if he called her pulmonologist. We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines. We ended up there for a few days.</span><br />
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<span style="font-size: large;"> Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist</span><span style="font-size: large;">. This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control. Things moved quickly and at times it seemed to quickly for me; the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube. The procedure was scheduled and the tube was placed. Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings. </span><br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-C16Zo84C9XI/Wkmb425AdwI/AAAAAAAABiI/x17reG5iNr0Cgs5HowtHnasQJ187bgRkwCLcBGAs/s1600/kerstin%2Bat%2Bgi.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="550" height="320" src="https://2.bp.blogspot.com/-C16Zo84C9XI/Wkmb425AdwI/AAAAAAAABiI/x17reG5iNr0Cgs5HowtHnasQJ187bgRkwCLcBGAs/s320/kerstin%2Bat%2Bgi.jpg" width="275" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First visit with new team member. </td></tr>
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Gl9PHKIndag/WkmcToXGXxI/AAAAAAAABic/7Wva52cWLHwwkqXKHh_HwPN18onNnlgNACLcBGAs/s1600/kws%2Bgj%2B1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://3.bp.blogspot.com/-Gl9PHKIndag/WkmcToXGXxI/AAAAAAAABic/7Wva52cWLHwwkqXKHh_HwPN18onNnlgNACLcBGAs/s320/kws%2Bgj%2B1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Checked in at IR</td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-guUXkV8qdlg/WkmcTR8VA8I/AAAAAAAABiU/VymwQzzZFigpZgxLs7fHt_0UCvLjt-OswCLcBGAs/s1600/kws%2Bgj%2B2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://2.bp.blogspot.com/-guUXkV8qdlg/WkmcTR8VA8I/AAAAAAAABiU/VymwQzzZFigpZgxLs7fHt_0UCvLjt-OswCLcBGAs/s320/kws%2Bgj%2B2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Post GJ placement</td></tr>
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ibAB86V_9wE/WkmcTuVfODI/AAAAAAAABiY/mzhgYsiB_68oBTQcK2W5ejgSBheOTj60gCLcBGAs/s1600/kws%2Bgj%2B3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://4.bp.blogspot.com/-ibAB86V_9wE/WkmcTuVfODI/AAAAAAAABiY/mzhgYsiB_68oBTQcK2W5ejgSBheOTj60gCLcBGAs/s320/kws%2Bgj%2B3.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hours later, all smiles and ready for the new journey.</td></tr>
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<span style="font-size: large;"> Sweet November...and what a story it has for us. I am not fond of Novembers at Children's of Alabama. Yet, this is where we found ourselves and the week before Thanksgiving. Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly. She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings. After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case. In fact, we would spend a week there. More pneumonia, seizure activity as well as the stomach issues. </span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-3BkDmi3RsKU/WkmcUaALa1I/AAAAAAAABig/V2_gpwRBvcAd5nEBkhU6rzuEZzMi3pT_gCLcBGAs/s1600/kws%2Bnov%2B1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://1.bp.blogspot.com/-3BkDmi3RsKU/WkmcUaALa1I/AAAAAAAABig/V2_gpwRBvcAd5nEBkhU6rzuEZzMi3pT_gCLcBGAs/s320/kws%2Bnov%2B1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back at Children's</td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-DwBESQ3vIn0/WkmcVHLmwII/AAAAAAAABis/Vlsb929oeysKxWdL_MCfJ9-5WBK_yplsACLcBGAs/s1600/kws%2Bnov%2B3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://2.bp.blogspot.com/-DwBESQ3vIn0/WkmcVHLmwII/AAAAAAAABis/Vlsb929oeysKxWdL_MCfJ9-5WBK_yplsACLcBGAs/s320/kws%2Bnov%2B3.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Resting after a very long day. </td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/--gjnDQC6a2w/WkmcVkGwYKI/AAAAAAAABi0/IXrXY84_T20t3qPg3ikulumu5viHPuE4wCLcBGAs/s1600/kws%2Bnov%2B5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://2.bp.blogspot.com/--gjnDQC6a2w/WkmcVkGwYKI/AAAAAAAABi0/IXrXY84_T20t3qPg3ikulumu5viHPuE4wCLcBGAs/s320/kws%2Bnov%2B5.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Comfort aids</td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-8djg1sgb0Ls/WkmcWU9UYAI/AAAAAAAABi4/Kh4U3whCWoYljzxD3zlIW05KnRuUhcQ_wCLcBGAs/s1600/kws%2Bnov%2B6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://2.bp.blogspot.com/-8djg1sgb0Ls/WkmcWU9UYAI/AAAAAAAABi4/Kh4U3whCWoYljzxD3zlIW05KnRuUhcQ_wCLcBGAs/s320/kws%2Bnov%2B6.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A mother's saving grace(s)</td></tr>
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<span style="font-size: large;"> In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better! </span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/---583O3Zt3M/WkmeGi52HuI/AAAAAAAABi8/d-tUu5RDYNw1Ha3s40OMB340eVUlIlx9QCLcBGAs/s1600/Kerstin%2Band%2Bmommy%2Bon%2Bthe%2Bbi%2Bsweet%2B16.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/---583O3Zt3M/WkmeGi52HuI/AAAAAAAABi8/d-tUu5RDYNw1Ha3s40OMB340eVUlIlx9QCLcBGAs/s320/Kerstin%2Band%2Bmommy%2Bon%2Bthe%2Bbi%2Bsweet%2B16.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking forward to what's to come.<br />
What will happen if we don't give up? Endless possibilities!</td></tr>
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<span style="font-size: large;">More to come in the New Year!</span><br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-24813702548478171632017-10-11T00:17:00.000-05:002017-10-11T00:17:13.495-05:00It's happening so quickly! <span style="font-size: large;">"It's happening so quickly!" That was my response after receiving a call from a radiology nurse at Children's Hospital on last Monday, October 2nd. With a very calming tone, she wanted to speak with the parent or guardian of Kerstin. After pleasantries were exchanged, she told me that she was in fact calling to schedule Kerstin's appointment to have her G-J tube placed. I must admit that I was caught a bit off-guard by the quick turnaround. I was even more surprised when she stated that the procedure could be done this Friday the 6th or Wednesday or Friday of next week. I said, "This Friday? It's happening so quickly!" I paused, I guess she thought I had hung up or something. I grabbed my datebook because another one of Kerstin's appointments had been rescheduled to this week, I told her that Friday would not work for us. </span><br />
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<span style="font-size: large;"> Believe it or not, the Sunday before, I had mentioned to my family that I felt like there would be a call from either the doctor or the hospital about scheduling the procedure. So I was mentally preparing myself for this by writing down possible dates. This did not become real until Jenna (nurse from radiology) called. Real did not become so emotional until the call. The tears came...it is real, again. No matter how minor it may be said to be, it does something to the emotions because, Kerstin is my child! My girl child!</span><br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-XioUAg54s7k/WdPQEr_yvaI/AAAAAAAABfw/WpjDryyVHNMRuoi0fPWnRLbauxq_5zcGwCEwYBhgL/s1600/G%2BJ%2BTube%2Bpossible%2Bdates.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="360" height="320" src="https://4.bp.blogspot.com/-XioUAg54s7k/WdPQEr_yvaI/AAAAAAAABfw/WpjDryyVHNMRuoi0fPWnRLbauxq_5zcGwCEwYBhgL/s320/G%2BJ%2BTube%2Bpossible%2Bdates.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dates of possibility.</td></tr>
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<span style="font-size: large;"> So, on today, Kerstin will be having the procedure to replace her g-tube with a g-j-tube. Kerstin is strong. This new feeding tube will only help her even more. Having to have the g-tube became touching but it was for her good and this g-j-tube will also be for her good. </span><br />
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<span style="font-size: large;">More to come...</span><br />
<span style="font-size: large;"><br /></span>
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com2tag:blogger.com,1999:blog-1724653266187609004.post-19688746405427789692017-10-05T00:17:00.000-05:002017-10-05T00:17:08.568-05:00"One Small Ripple" <br />
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<a href="https://2.bp.blogspot.com/-54dLb4Snjic/WdVmnLNxeBI/AAAAAAAABgs/tDetkg-jnXYyIeCcJw6Brxi-YT9RixgqACEwYBhgL/s1600/Kerstin%2BRIPPLES%2Bblog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="360" height="320" src="https://2.bp.blogspot.com/-54dLb4Snjic/WdVmnLNxeBI/AAAAAAAABgs/tDetkg-jnXYyIeCcJw6Brxi-YT9RixgqACEwYBhgL/s320/Kerstin%2BRIPPLES%2Bblog.jpg" width="180" /></a></div>
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<span style="font-size: large;"> One small ripple...ripples in a pond. We have heard the expression that we are all connected in some way; our connections are intertwined in ways we may not even be aware. Also, the ripple effect is often considered when we think of how one action can flow out to other areas and people around us. Those actions can be negative or positive. Well, I like to think of my daughter, Miss Kerstin as a ripple. She is a ripple in a pond of so much love!</span><br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-dSzeUgkFMRU/WdVjjWR0lJI/AAAAAAAABgM/auXveHOsu9kTDqhx4k3BTSdmjzfugXOaQCLcBGAs/s1600/RIPPLES%2B.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="732" data-original-width="1125" height="208" src="https://4.bp.blogspot.com/-dSzeUgkFMRU/WdVjjWR0lJI/AAAAAAAABgM/auXveHOsu9kTDqhx4k3BTSdmjzfugXOaQCLcBGAs/s320/RIPPLES%2B.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One Small Ripple</td></tr>
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<span style="font-size: large;"><br /></span>
<span style="font-size: large;"> While watching one of her favorite <a href="http://pbskids.org/" target="_blank">PBS Kids</a> shows, "<a href="http://pbskids.org/splashandbubbles" target="_blank">Splash and Bubbles</a>" with her, I heard the sweetest little song about making a difference. "<a href="https://www.youtube.com/watch?v=VPp0AoLdtqo" target="_blank">One Small Ripple</a>", the lyrics of the song:</span><br />
<span style="font-size: large;"><br /></span>
<div style="text-align: center;">
<span style="font-size: large;">"I'm gonna make one small ripple.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">Yeah, I believe a little thing like that </span></div>
<div style="text-align: center;">
<span style="font-size: large;">can turn into a big ol' wave.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">I'm gonna make one small ripple.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">Can you imagine what a difference </span></div>
<div style="text-align: center;">
<span style="font-size: large;">a lot of little ripples could make?</span></div>
<div style="text-align: center;">
<span style="font-size: large;">The tiny things we do today, </span></div>
<div style="text-align: center;">
<span style="font-size: large;">make a world of difference half a world away.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">So, if I had the chance I should make my ripple</span></div>
<div style="text-align: center;">
<span style="font-size: large;">something good.</span></div>
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<span style="font-size: large;">You'll be amazed, I know it's true. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">I hope you get inspired too. </span></div>
<div style="text-align: center;">
<span style="font-size: large;">With one small ripple coming from me and you.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">And see what my small ripple can do."</span></div>
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<div style="text-align: left;">
<span style="font-size: large;"> The song made me further think about how I have been told numerous times how Kerstin has touched so many with her smile, her will, her strength. You see, this child of mine has been through so much but she still manages to smile and inspire others, not just locally but across the state country and around the world! She is my light, my life and I truly hope that her ripple is making a difference. It has for me, and I don't mind sharing this journey of "Growing With Kerstin" with you all! </span></div>
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<a href="https://3.bp.blogspot.com/-cAAhiFFdJvs/WdVmnN38qzI/AAAAAAAABgo/O4xUYWSezcQvvbv5ywnCTwQWc2dWkUqgQCLcBGAs/s1600/Kerstin%2BRIPPLES%2Bblog2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1423" data-original-width="1080" height="320" src="https://3.bp.blogspot.com/-cAAhiFFdJvs/WdVmnN38qzI/AAAAAAAABgo/O4xUYWSezcQvvbv5ywnCTwQWc2dWkUqgQCLcBGAs/s320/Kerstin%2BRIPPLES%2Bblog2.jpg" width="242" /></a></div>
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<span style="font-size: large;">More to come...</span></div>
<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0px;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com1tag:blogger.com,1999:blog-1724653266187609004.post-26999780198734471112017-09-29T00:17:00.000-05:002017-09-29T00:17:06.420-05:00Rumination! GI findings <span style="font-size: large;">Rumination! What is that, you ask? That was my question as well. So, rumination is defined as having a deep or considered thought about something and it is also defined as the act of chewing. Makes sense! Chewing...smacking, that is what Kerstin has been doing. Her gastroenterologist (GI doc) also said that rumination could be behavioral but, it would be difficult to determine if that is the case with Kerstin. I am no medical expert but, I am a Kerstin expert, I do not know if it is actually behavioral. This has been ongoing for a while, when it started she would do it as soon as I would be done with her bolus and close her mic-key button. It would be ongoing for 20-30 minutes after. </span><br />
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<span style="font-size: large;"> This process becomes so bothersome to Kerstin especially when she does it to the point of gagging/ retching and sometimes actually vomiting. Which would lead to aspiration as mentioned in "The Summer of New Things -- Things Anew!". Kerstin has been placed on medicines for reflux, which is also a problem and with this medicine, we had hoped it would help with the chewing/smacking. Originally, that was what the chewing was thought to be. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"> Well, after meeting with GI and he took some time to watch Kerstin receive her bolus, and immediately began to ruminate. He informed us that a rumination specialist would be on board in December and he would like to add him to Kerstin's care team. About a week after her appointment with GI, Kerstin has this lime green residual, which she has never had before. It was especially surprising since she rarely ever has residual in the mornings. I call to inform her team about this, I was pleased that they were not alarmed by it and was told to keep an eye out for it. She did not have any more that day or the next but did about four days later. </span><br />
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<span style="font-size: large;"> In the meantime, there had been some back and forth phone conversations with her doctor. He personally called to let us know that he had been talking with her surgeon and they decided that a somewhat common procedure known as the fundoplication may not be ideal for Kerstin. He went over three options with me: 1) changing her gtube to a <a href="https://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube" target="_blank">gjtube</a> 2) accept the rumination and watch for aspiration or 3) <a href="https://videolibrary.globalcastmd.com/esophageal-disconnect-for-severe-gerd-in" target="_blank">esophageal disconnect</a> surgery. Two of the three sound like another procedure, something I always want to avoid with my child. Sometimes, some things are unavoidable or inevitable. </span><br />
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<span style="font-size: large;"> Her doctor was once again so patient with this mom. He told me to talk things over with the family and let him know if we had any questions about any of the options. Well, that was last Thursday, things were talked over with the family. I was reminded how I fought against Kerstin even getting a feeding tube placed and quickly learned the ropes, she is thriving and otherwise healthy and doing well with her boluses. Her getting a gjtube would not be too much different. I even "phoned a friend" whose daughter has a gjtube to get a firsthand perspective. Talking to another mom gave me comfort. Everybody wanted to know when I would call the doctor back, I wanted to wait as long as I possibly could but, had a true gut instinct that he would call me soon and he did. He called on Wednesday to see had we talked and if I had more questions. I did and once again, he patiently answered each and everyone of them. </span><br />
<br />
<span style="font-size: large;"> The plan now is to meet with GI, surgeon and nutritionist to get Kerstin's health plan, feeding plan and procedure in order. Procedure...yes, another procedure! This too will be for her good. This means, I have more to learn in order to be and do the best I can for Kerstin! </span><br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-S8I51wwrh6c/Wc27ABIvmJI/AAAAAAAABfM/HvfIrmx-TMw5PR3R_YRZMY8LLGGGIlECACLcBGAs/s1600/Kerstin%2Bsmiling%2Bthru%2Bit%2Ball%2Bbig%2Bsmile.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-S8I51wwrh6c/Wc27ABIvmJI/AAAAAAAABfM/HvfIrmx-TMw5PR3R_YRZMY8LLGGGIlECACLcBGAs/s320/Kerstin%2Bsmiling%2Bthru%2Bit%2Ball%2Bbig%2Bsmile.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling through it all! </td></tr>
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<span style="font-size: large;">Resources: </span><br />
<span style="font-size: large;"><a href="http://www.feedingtubeawareness.org/tube-feeding-basics/surgery-procedures/g-to-gj/" target="_blank">G to GJ -- Feeding Tube Awareness</a></span><br />
<span style="font-size: large;"><a href="https://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube" target="_blank">G-J Tube Care --Cincinnati Children's</a> </span><br />
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<span style="font-size: large;">More to come...</span><br />
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<br />
<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com1tag:blogger.com,1999:blog-1724653266187609004.post-43839682796436242992017-09-28T00:17:00.000-05:002017-09-28T09:36:05.348-05:00The Summer of New Things --Things Anew! <span style="font-size: large;">As we have eased into Fall, at least the calendar says we are. I reflect back over the summer that was. Uneventful it was not. It started out with the usual lazy days of summer. Those days suddenly changed in July and seem to have been almost unending since. Kerstin had some stomach/ GI issues at the beginning of July which lead to some vomiting which lead to her aspirating which lead to pulmonary issues. This one episode of vomiting lead her to on and off pulmonary and bronchial problems. Before she had the actual vomiting, I had started to take note of Kerstin constantly chewing and smacking shortly after her boluses. We talked with nutrition and her doctors and she was put on a medicine for reflux with the hope that it would help. Not so much!</span><br />
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<span style="font-size: large;"> So, back to the episode with the vomiting and pulmonary problems. Kerstin was sick, having these bad coughing spells that would seem to take her breath away. No amount of CPT and breathing treatments seemed to be working so, we would head to the pediatrician.</span><br />
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<span style="font-size: large;">Kerstin was listened to, labs taken, sent for xrays to make sure that the crackle in her lungs (right specifically) was not pneumonia. Her doctor placed her on a round of antibodies for a week to help clear her up. Along with the antibiotic she was receiving around the clock CPT and breathing treatments. </span><br />
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<a href="https://3.bp.blogspot.com/-RFljvRKu6a8/WcxaoCQ9nBI/AAAAAAAABdQ/vHn6gWi0UyEA3VtcpM4F0t06pSxRrfrdQCLcBGAs/s1600/Kerstin%2Bsick%2Bbreathing%2Btreatment.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://3.bp.blogspot.com/-RFljvRKu6a8/WcxaoCQ9nBI/AAAAAAAABdQ/vHn6gWi0UyEA3VtcpM4F0t06pSxRrfrdQCLcBGAs/s320/Kerstin%2Bsick%2Bbreathing%2Btreatment.jpg" width="240" /></a></div>
<span style="font-size: large;">A week later Kerstin still was not feeling better! This congestion just wasn't breaking, the antibiotic had not cleared anything. We were back at the pediatrician again only to find out that not only was there crackling in her right lung, it was present in her left. Her doctor looked just as defeated as I did. He told me that he was going to call up to Children's and talk with her pulmonologist. As we sat in the exam room, reading stories and listening to her Kirk Franklin. I remember Kerstin looking at me and smiling. I checked my phone to see what song she was listening to and it was "My Life Is In Your Hands". I posted the screenshot to Instagram because my first thought was how appropriate the song was in that we never know what a day will hold for us. </span><br />
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<span style="font-size: large;"> After some time, the doctor came back to inform that he had sent xrays and labs to Children's and that Kerstin's pulmonary team was prepping a room for her! I remember just staring at him! He said they agreed that it would be best if she was admitted there in order to get the care she really needed. </span><br />
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<span style="font-size: large;">Prepping a room...they had done that indeed. We got there, she was quickly admitted and taken up to her room where we would spend the next four days. Kerstin would get CPT and breathing every three hours the entire stay, she was having trouble with her oxygen levels and required oxygen for 2 of the 4 days. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">She manages to smile through so much. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It has been a long day. </td></tr>
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<span style="font-size: large;"> After being discharged and home for a few day, Kerstin ended up back at Children's, this time with big GI issues, literally. Kerstin's stomach was so distended, I was so afraid that pancreatitis had made an unwanted return! Before knowing we would have to go back, we watched Kerstin's stomach balloon in the matter of hours. I researched and found Youtube videos on what to do in the even of...venting was the common thing mentioned. Venting the gtube was not helping! I emailed pictures to her nutritionist and nurses.</span><br />
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<span style="font-size: large;"> Kerstin was so uncomfortable and did not want to be moved in any position. The nurse called back and said she had received the pictures and wanted me to pack a few things since we lived so far from Children's! I hadn't even fully unpacked from the week before. She gave directions on what to do when we arrived back at the hospital; if Kerstin go sick(er) on the ride to take her directly to the ER at the hospital, if not further directions were given. Thankfully, the luggage was NOT needed. An in office procedure determined intestinal gas, that could not and would not be corrected with gtube venting. Also, nutrition and meal plans were changed while there. </span><span style="font-size: large;">Fast forward to about a month later, just before Kerstin's pulmonary appointment, we have respiratory issues again. Pulmonologist hears more crackling in her lungs. Days before she had more vomiting and apparent aspiration. So, more antibiotics! </span><br />
<span style="font-size: large;"> Fast forward again, about a week this time. We are meeting with a new GI doctor. He was in no rush to be in and out of the room, he listened to all questions and concerns and sincerely answered each. He even wanted to watch as Kerstin was given a bolus to see firsthand the chewing and smacking that eventually makes her gag and retch and sometimes vomit which leads to the aspiration and congestion. The smacking...rumination! What? I had never heard of that. That is a topic for another post on another day. More to come...</span><br />
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-29485696218164127702017-06-22T21:57:00.002-05:002017-06-22T22:03:24.506-05:00Coming from the heart! We've all seen what has been in the news as it pertains to healthcare. The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many. In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid. <br />
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Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama. He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts. When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as well...as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects. <br />
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As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live. All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid. Completely covered! If it was not for Medicaid, these costs would be devastating on our family.<br />
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Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies. Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00. These costs DO NOT include any of Kerstin's medicines. <br />
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Now, as titled "Coming from the heart!", I am coming from my heart with this entire post. We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more. Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't. I can't take on a full time job outside of our home because of her needs and care. I have a part-time job and I am also continuing my education online. Kerstin is a minor child on Medicaid...know any jobs for her? <br />
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Kerstin's life depends on Medicaid. Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears. Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid. <br />
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It's not too late to make your voice heard about healthcare! Call, text, write, tweet and do it again!<br />
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<tr><td class="tr-caption" style="text-align: center;">#IAmMedicaid</td></tr>
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-69420133128368260552017-03-14T00:17:00.000-05:002017-03-14T00:17:10.583-05:00Side lying.<span style="font-size: large;"> Once again, it has been some time since I've made a post with updates on Miss Kerstin. Well, she has been doing well. Since the last post she has had another round of Botox for her wrists. Just in the past two weeks or so, her occupational therapist has mentioned talking with Kerstin's doctor about possibly doing tendon lengthening surgery to help with relaxing her wrists. That part of this journey will be closely monitored. For now, we will talk about dear old side lying. As I am writing the boss, is wanting to be a bit fussy about side lying and she's only been down for about 5 minutes so far. She has a few more to go. </span><br />
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<span style="font-size: large;"> Last month at her PT visit, therapist suggested "side lying" to help with another cumbersome place...the tightness of the right side of her neck. Hence, the neck support and her always tilting her head down and to the right. Sometimes Kerstin is okay with it and others. like right now, she grumbles about it. However, she stops long enough to watch tv for a bit and starts right back. It is suggested to keep her in this position as long as she tolerates it. One day toleration was well over an hour. We will see about today. </span><br />
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<span style="font-size: large;"> A little about side lying. Most probably equate this position with pregnancy however, side lying can be very beneficial in some forms of sleep apnea, it can help with some clients/ patients with dysphagia and numerous other conditions. Case and point, miss Kerstin, diagnosed with Cerebral Palsy and now needs side lying to hopefully help strengthen and lengthen muscles in her neck, further helping with her head control. More information on side lying can be found <a href="https://www.amtamassage.org/articles/3/MTJ/detail/2850" target="_blank">here</a> and <a href="http://medical-dictionary.thefreedictionary.com/side-lying+position" target="_blank">here</a>. </span><br />
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<span style="font-size: large;"> Kerstin is to be positioned onto her left side, with her head and spine aligned, eventually lowering her head in order to stretch and lengthen the muscles in the right side of her neck. Check her out in these pictures. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Side lying. She's ready sometimes and others not so much.<br /></td></tr>
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-15607626559529831362016-10-30T12:02:00.002-05:002016-10-30T12:02:25.760-05:00Medicaid in Alabama!<span style="font-size: large;"> Medicaid in Alabama! Cuts to medicaid. Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them. Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid. She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life. My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers! </span><br />
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<span style="font-size: large;"> How was I going to do this? As always, with Kerstin by my side and my older sister being our personal photographer. I shared just some of what potential cuts could mean for Kerstin. In order to get there, you'd have to know her story. Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study. Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive! There are medicines for seizures, spasticity, along with her nutritional and feeding needs. Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income. </span><br />
<span style="font-size: large;"> I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the </span><a href="https://www.amazon.com/PEDIASURE-PEPTIDE-1-5-CAL-VAN/dp/B014I8CTGC/ref=sr_1_1?ie=UTF8&qid=1477843349&sr=8-1-spons&keywords=pediasure+1.5+cal&psc=1" style="font-size: x-large;" target="_blank">specialized</a><span style="font-size: large;"> kind that she needs because of stomach sensitivities. Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78. That case would not last her a week!! Because Kerstin is a growing child and her nutritional needs have changed, the new </span><a href="https://www.amazon.com/Vital-Nutritional-Supplement-SUPPLEMENT-VANILLA/dp/B00962CRYU/ref=sr_1_2_a_it?ie=UTF8&qid=1477843517&sr=8-2&keywords=vital+1.5+cal" style="font-size: x-large;" target="_blank">therapeutic nutrition</a><span style="font-size: large;"> she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case. Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat. These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid). Medicaid, makes all of this possible for Kerstin's survival.</span><br />
<span style="font-size: large;"> Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists. These necessities are paid through medicaid. Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances. The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether. If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers. These cuts could have negative and potentially harmful impacts throughout. </span><br />
<span style="font-size: large;"> There are so many misconceptions out there about medicaid. Some being that, the program is misused and that many people on it actually do not need the services. I beg to differ, especially when it comes to my daughter. As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs. I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin. </span><br />
<span style="font-size: large;"> Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts. It is my hope that humanity is at the forefront of this story. She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol). </span><br />
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<span style="font-size: large;">That portion has not been aired, dates to be announced. </span><br />
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<span style="font-size: large;">Reports:</span><br />
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<span style="font-size: small;"><a href="http://www.wsfa.com/story/31778796/i-am-medicaid-campaign-aims-to-show-lawmakers-the-humanity-of-whats-at-stake" target="_blank">WSFA :I am Medicaid' campaign aims to show lawmakers the humanity of what's at stake</a></span></h2>
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<a href="http://raycomgroup.worldnow.com/story/31778796/i-am-medicaid-campaign-aims-to-show-lawmakers-the-humanity-of-whats-at-stake" target="_blank">Raycom News Network</a></div>
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<a href="http://www.annistonstar.com/news/alabamians-use-iammedicaid-to-put-a-face-on-funding-crisis/article_b8be8868-0cc6-11e6-ae76-9f58581292c1.html" target="_blank">Anniston Star</a></div>
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0tag:blogger.com,1999:blog-1724653266187609004.post-71697897486351929582016-09-19T00:17:00.000-05:002016-09-19T00:17:06.594-05:00Where the Journey has taken us...<span style="font-size: large;"> It has been a few months since I've posted last but, needless to say, we are still on a journey, new things to explore each day. Since Kerstin's hospital stay for the <a href="http://cpaware.blogspot.com/2016/05/epilepsy-monitoring-unit-emu-day-1.html" target="_blank">video seizure study</a>, she has continued to have at least one episode per month, which is better than the point she had gotten to. Her neurologists have advised in the past that as long each of these seizures were not like a video of one of her seizures shared with them, they would not be too alarmed by her activity. It seems as though seizures will be a part of our journey. They don't want her too medicated that she is not very alert or aware; I don't want that for her either. I will have you know that those days that she was in the EMU, there was no seizure activity of any kind, as soon as the two hour trip home was complete and she was all relaxed...seizure! </span><br />
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<a href="https://4.bp.blogspot.com/-cfRtGIPg_Cc/V98vYZn45wI/AAAAAAAABXc/TFf0cAgj7TEp5Ld3G4EFNx3842LQ_YtugCLcB/s1600/IMG_1696%255B1%255D.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-cfRtGIPg_Cc/V98vYZn45wI/AAAAAAAABXc/TFf0cAgj7TEp5Ld3G4EFNx3842LQ_YtugCLcB/s320/IMG_1696%255B1%255D.JPG" width="320" /></a></div>
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<span style="font-size: large;"> So, after that seizure study, came the end of the school year and Kerstin's time in middle school. Off to high school! After many years of ups and downs and hard fights of advocacy for inclusion, accessibility and much more with the local school system, I decided to start a private home-school for Kerstin! Yes, we are on the journey of homeschooling. The lessons are modified and truly catered to her, we are on her schedule. After talking with a friend about homeschooling this past Spring, she made me realize that Kerstin's education didn't have to take place all day long in a classroom, especially not a "self-contained" setting. We are about a month in and it has been fun for me to find great resources on Youtube and various other forms. Kerstin has been enjoying the lessons except that one day, I decided to take Science outside...not a good idea in late August. It was still way too hot!</span><br />
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<a href="https://4.bp.blogspot.com/-Gzcmb0AtLik/V98vlHj_cjI/AAAAAAAABXg/IYVMg_j5yfUh-cW5QEJ5Bwdwvr4OU_1CACLcB/s1600/IMG_1443%255B1%255D.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-Gzcmb0AtLik/V98vlHj_cjI/AAAAAAAABXg/IYVMg_j5yfUh-cW5QEJ5Bwdwvr4OU_1CACLcB/s320/IMG_1443%255B1%255D.JPG" width="320" /></a></div>
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<span style="font-size: large;"> Kerstin has been getting much needed PT and OT, and on a regular basis, unlike services in the school setting. We have been working on some neck exercises with physical therapy and wrist tightness with occupational therapy. The wrist tightness and contracture lead us to Kerstin's neuro-motor/ physical development doctor to discuss Botox as an option. Well, she got her first round and weeks later her OT is happy with some of the flexibility she is gaining and specially made some hand splints to further help with the wrists. We are still working on neck support and strengthening. PT suggested we look into a product that helps with those things, <a href="http://surestep.net/products/dynamic-cervical-orthosis" target="_blank">Dynamic Cervical Orthosis</a>. Information is being requested on the product as it is something new for us all. </span><br />
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<span style="font-size: large;"> It may not be well known but, I am grateful to be in a position as a Family Resource Specialist with Family Voices of Alabama. The mission of<a href="http://familyvoicesal.org/aboutus.php" target="_blank"> Family Voices</a> is to ensure that there is family-centered care for children and youth with special health care needs. The information center that I am a part of is staffed by parents of children/youth with special health care needs. I have been with Family Voices a little over two years now and it has been a wonderful step in this journey of education and advocacy. We have this booklet titled <a href="http://familyvoicesal.org/resources-fm-YTP.php" target="_blank">"Transition to Adult Health Care Guide"</a>. I have had them in my supplies and have handed them out at conferences and workshops and have said to myself countless times that, "I have a while before I need to go through one for Kerstin". No...it came sooner that I thought. I got a letter from insurance and social security with information on how to prepare as "the minor child approaches adulthood"! WHOA! This is happening too fast. Kerstin was just starting school, now she's in high school and I have to think about "adulthood". I pulled out a copy of the transition guide and started combing through it realizing that my baby is no longer a baby. </span><br />
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<span style="font-size: large;"> We are always on a journey and a lot of times they lead us to Target and Starbucks...Growing With Kerstin. </span><br />
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<a href="https://4.bp.blogspot.com/-eDK-CpM3iNk/V98u5BRUKSI/AAAAAAAABXU/PxGaaz9U8zk6mo5jePy-XpwwMNeFuvh5QCLcB/s1600/IMG_1772%255B1%255D.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-eDK-CpM3iNk/V98u5BRUKSI/AAAAAAAABXU/PxGaaz9U8zk6mo5jePy-XpwwMNeFuvh5QCLcB/s320/IMG_1772%255B1%255D.JPG" width="320" /></a></div>
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<span style="font-size: large;">More to come,</span><br />
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com1tag:blogger.com,1999:blog-1724653266187609004.post-77833907381057732052016-05-17T21:25:00.000-05:002016-05-17T21:25:02.820-05:00Epilepsy Monitoring Unit (EMU): Day 1<span style="font-size: large;"> I am going to try and make a post at the end of day each day of our stay here at the Children's Hospital EMU. As I prepare to post about the busy day, I can't help but think about my mom. I listened to a recording of a conversation I had with her on May 17, 2015 at around 9:50 am. Yes, one year ago, Kerstin had had a seizure and was restless the night before (May 16, 2015), my mom was concerned as always and as we talked, she told me that she hoped Kerstin's doctors could find out what was going on with her. Well mom, it's been a journey and many appointments later, we are here to go through another series of tests and studies to see what's going on. </span><br />
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-HcuaI0cv_oc/VzvQuFrCd4I/AAAAAAAABVI/Xn_HFyEjobUbZxWnzhCCPv6N6LRjaBtmgCLcB/s1600/emu%2B1%2Bpeople%2Bwatching.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-HcuaI0cv_oc/VzvQuFrCd4I/AAAAAAAABVI/Xn_HFyEjobUbZxWnzhCCPv6N6LRjaBtmgCLcB/s320/emu%2B1%2Bpeople%2Bwatching.jpeg" width="240" /></a></td></tr>
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<span style="font-size: large;"> Today, we checked in at noon. Then it was on to the 10th floor of the Russell building; a very familiar floor. We've even seen familiar faces. All too surreal. I am very thankful that Kerstin is not here because of unexpected surgeries or illnesses. However, we are here because of the increase in seizure activity Kerstin has been experiencing. Tonight is the first night of monitoring, she's been placed in her "mummy head-wrap", leads and wiring everywhere. She is content, comfortable and seems to be relaxed. Though, for whatever reason, her temp tried to spike a bit, no worries, it has already gone down. </span><br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-JAupLYzrC4I/VzvQ-Tw-TeI/AAAAAAAABVM/OSMLjZqcce4pfmw7OEvHbD6LwMQvcrLMACLcB/s1600/emu%2B1%2Blead%2Bplacement.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-JAupLYzrC4I/VzvQ-Tw-TeI/AAAAAAAABVM/OSMLjZqcce4pfmw7OEvHbD6LwMQvcrLMACLcB/s320/emu%2B1%2Blead%2Bplacement.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lead placement. </td></tr>
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<span style="font-size: large;"> Not sure what the night will include but an update is on the way tomorrow. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">All wrapped...monitoring in progress. </td></tr>
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<span style="font-size: large;">More to come...</span><br />
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<br />Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com0Children's Hospital, Birmingham, AL 35233, USA33.5040385 -86.80516490000002233.5023745 -86.807696900000025 33.5057025 -86.80263290000002tag:blogger.com,1999:blog-1724653266187609004.post-79666590981586356342016-02-17T00:17:00.000-06:002016-02-17T08:19:26.133-06:00Seizures Suck!<span style="font-size: large;"> </span><br />
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<span style="font-size: large;"> "Seizures Suck!" If you have a family member or if you know someone who has a seizure disorder or is diagnosed, you have probably heard them say those words or have seen them around. They are so true. Seizures suck the life out of a party so to speak. The day or night may be going along smoothly, then out of nowhere...SEIZURES happen and literally suck the joy from the moment. </span><br />
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<span style="font-size: large;"> Kerstin's first seizure (first visible one anyway) was April 15, 2004. That is a night I won't forget for some time. Since then I can't even begin to count the number of seizures she has had. However, it is a fact that the older my daughter has gotten, the more frequent her seizures have been happening. At first, they were spaced by days, weeks even months, not anymore. I can tell you that we are blessed enough to say that she is not having them on a daily basis like so many with the diagnosis. </span><br />
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<span style="font-size: large;"> On Monday, February 15 we were once again at Children's Hospital for another neurological appointment. My oldest sister went along with us to this seemingly routine appointment and I jokingly told her that I hadn't been on the other wing of the hospital since Kerstin had been discharged after that month long stay. Right off the elevator we even bumped into a former nurse practitioner that worked with Kerstin's orthopedic specialist, chatted with her for a minute and rushed off to the appointment. </span><br />
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<span style="font-size: large;"> Once in the back, Kerstin and I snapped a few pics, she's always camera ready :)) Nurse comes in first and we share seizure activity since the last appointment, talked about sleep pattern and routine question and answer. Later, the doctor comes in and routine checks are done, we go into detail about seizure activities and how long they last. Kerstin is a growing young lady, Dr. talked all about hormonal changes, progesterone, Depo-Provera, ovulation, cycles and the numerous common female changes that can in fact increase seizure activity. </span><br />
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<span style="font-size: large;"> Also, noted was the need to have an updated MRI study done as well as the need for a sleep and seizure study. Okay. "I need to have all of these done before we consider the Depo shots and to rule out the need for any epilepsy surgery." says the doctor. The stunned mommy in me, couldn't even ask details on "epilepsy surgery". There will be no need for that. Yet, in my mind I am still thinking that the sleep study, seizure study and MRI would be an overnight process...NO! We are now mentally preparing for a week long stay in our former apartment building called- Children's Hospital of Alabama-Birmingham! </span><br />
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<span style="font-size: large;">The journey continues...grow with us!</span><br />
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<span style="font-size: large;">More to come... and yeah,</span><br />
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<a href="https://4.bp.blogspot.com/-095i9rn2Ca0/VsQBIz4XAPI/AAAAAAAABTI/re4Ue2HzCp4/s1600/seizures%2Bsuck.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://4.bp.blogspot.com/-095i9rn2Ca0/VsQBIz4XAPI/AAAAAAAABTI/re4Ue2HzCp4/s1600/seizures%2Bsuck.jpg" /></a></div>
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<a href="http://www.mylivesignature.com/" target="_blank"><img src="http://signatures.mylivesignature.com/54489/145/A3BFAB082985CDCDF8F04C89046AD132.png" style="background: transparent; border: 0;" /></a>Growing With Kerstinhttp://www.blogger.com/profile/11255235790080688158noreply@blogger.com1