Our lives changed forever on the morning of October
29, 2009, when Joey was rushed by ambulance from his school to Children's Hospital. Completely unresponsive with
his O2 reaching the lowest its ever been....39. Joey would spend seven weeks in the ICU/SCU slipping in and out of a
coma. Joey was intubated four times and four times our family told Joey "good-bye". By the grace of God Joey came
home on December 17, the same night as the "2nd Annual Joey Paulin Christmas Benefit" hosted by Gia's dance teacher, Ms. Tiffany.
To everyone's surprise, Joey attended the benefit and was all smiles as he watched the girls dance on stage and had even bigger
smiles for two of his heroes from the Alabaster Fire Department who were also there that night. It seemed as if 'our
Joey' was back.
Owen & Joey....Best Buddies
January 2010
February 2009: Click on the video above to see our
visit to the Georgia Aquarium - Joey was wide eyed the entire time!
The "Finding Nemo" Cake!
Keri & Joey
Gia & Joey, The Georgia Aquarium
February 4, 2009
After Missing Water Therapy for 6 Weeks, Joey
Returned on April 5 - and LOVED it!!
Mitochondrial Disease Awareness Month
During the Fall of 2007, I began a
letter writing campaign to Governor Bob Riley asking him to declare the third week in September of every year as "Mitochondrial
Disease Awareness Week". With the help of so many of you, my dream became a reality and over 250 letters reached the
governor's desk. On August 21, 2008, we traveled to the Alabama State Capitol where Governor Bob Riley presented Joey
with a proclamation declaring the ENTIRE month of September "Mitochondrial Disease Awareness Month".
For more information about Mitochondrial illnesses, please click on UMDF's logo above.
In November 2008, Joey received a bike built just for him.
It was a very exciting day for our family as we watched Joey pedal a bike for the very first time. He knew exactly
what to do, putting his hands on the handle bars and his feet on the pedals. You can see the article that was in The
Alabaster Reporter by visiting: www.alabasterreporter.com to see their story on our little guy's big day. A very big thank you to
AMBUCS, Inc. and Brenda Ladun from ABC 33/40 for making this all possible for Joey.
Joey's First Four Years
Click on the photo
above to watch the movie we played at Joey's 4th birthday party covering his first four years of life. My friend Jennifer
in California says I should send a "kleenex" warning to anyone that watches this.
Child of Children's
Joey's story is now on Children's Hospital of Birmingham's website.
You can take a peek by clicking on the logo to the left.
Now, if they would just give us our own parking place!! :)
2008 For Joey...
December 2008: On
December 30, Joey had his ninth operation and spent just one night in the Special Care Unit at Children's Hospital.
Hoping that 2009 would be a better year for our little guy, Joey has already spent four days in the hospital since January
1, 2009.
November 2008:
Joey was hospitalized twice in November, both times for uncontrolable seizures. Both times, we had to call "911" and
the Alabaster FD was at our home in record time.
September 2008:
On the morning of September 4, I decided to take Joey to Children's Hospital since his seizures were becoming hard to control
at home. I was not even half way there when I had to pull off of the interstate and call "911" from my car - Joey
was convulsing and choking on his secretions. Joey stayed in the SCU once again for a few days and on September 8, Joey
had his eighth operation - this time to replace his IV port.
August 2008:
Two days of seizures at home resulted in Joey being taken via ambulance to the ER where Joey stayed for three days in
the SCU.
June 2008: Joey
was hospitalized three times, one of which he was taken via ambulance. Joey developed Mastoiditis in mid-June
and was hospitalized for two days on IV antibiotics. Then Joey had surgery on June 24 and had a
reaction to the anthestesia. This was Joey's seventh operation and never before has the anthestesia bothered him.
Joey was unable to fall asleep for 22 hours and was agitated and crying. We came home only to return 36 hours later
via ambulance with uncontrollable seizures.
April 2008:
Three days of off and on seizures resulted in Joey being placed in the Special Care Unit at Children's Hospital. Like
dozens of times before, there was no explanation for this sudden increase in seizure activity; it’s just the progression
of this terrible disease.
February 2008: Joey
was rushed to the ER after becoming severely dehydrated after four days of diarrhea. One of his doctors dismissed his
symptoms as "just a bug" and ignored my constant requests to have his formula changed. After 9 hours in the ER and countless
seizures as a result of his low blood sugar, I took matters into my own hands, found a nutritionalist, had his formula changed
and in less than 12 hours Joey was doing great.
March 21, 2009
Joey's first time holding a baseball!
"I can do all things through
Christ which strengtheneth me."
Php 4:13
In November of 2004, after months of testing,
we were given the news that our little Joey had Mitochondrial Disease. We knew our lives would never be the
same and we didn't know what to expect for Joey's life. The past four years have been a roller coaster ride of
highs and lows. To date, Joey has had seven operations and has been admitted to Children's Hospital of Birmingham
over 25 times. Through it all, Joey has proven to be quite a fighter. Joey survived an eighteen day coma
in March 2007 and even gained back all of the skills he knew pre-coma. In September 2007 Joey suffered a seven hour
seizure and we were told that Joey would not make it through the night, despite the large amounts of IV anti-seizure drugs
he was receiving. Fifteen hours later, Joey woke up with a smile on his face.
What
is Mitochondrial Disease?
Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails
to produce enough energy for cell or organ function.
The incidence about 1:4000 individuals in the US. This is similar to the incidence of cystic fibrosis
of caucasian births in the U.S.
There are many forms of mitochondrial disease. Mitochondrial disease presents very differently
from individual to individual.
Joey's Current Medical Conditions:
Mitochondrial Encephalomyopathy Complex I Deficiency
Seizures (All Types)
Extreme Hypotonia
Severe Developmental Delay
Choreoathetosis
Central Apnea
Unable to Swallow
Fed Via G-Tube
Someone I Love
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges
that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that
most of us take for granted.
Someone I love has needs that require me to allow 'outsiders' to have power and input in areas that should
be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able
to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that
have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be
able to describe.
Someone I love has taught me about love and about the really important things in life...
WELCOME TO HOLLAND Emily Perl Kingsley
I am often asked
to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience
to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David.
The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up
for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed
in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn
a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to
notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's
where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't
get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
April 12, 2005
July 2008
Mommy & Joey at The Bell Center
March 27, 2009
Joey "Prom King" Paulin
Joey In The News...
Click on the ABC 33/40 Logo to see Brenda Ladun's recent story
on Joey's progress at the Lakeshore Foundation. This was featured on her "Matters of Faith" segment on January 20, 2008.
Click The Fox 6 News Logo To see Joey & Lt. Ched
Burton.
You can see the most recent article by clicking on their logo.
This article was written on January 14, 2008.
Click on the above photo to visit Joey's
CaringBridge website. This site is updated each day with Joey's adventures, mishaps and accomplishments.
Joey was admitted
to the ICU at Children's Hospital in Birmingham on Thursday, March 1, 2007, after a 72 minute seizure left him unable to breathe
on his own. The seizure continued off and on for hours despite large doses of IV medications to stop the seizures.
Joey remained in a coma for 15 days and was in the hospital for a total of 35 days. Joey lost most of his hair
due to the stress his body was under during the coma but it grew back in record time (those good Italian genes).
Thank you to Saint Anthony to whom we said our Novena to and thank you to each of you for your continued prayers,
love and support.
To see the video of Joey coming
out of his coma for the first time, please click on the "video" link.
What are the Symptoms of Mitochondrial Disease?
Loss of muscle coordination & muscle weakness
Neurological problems, seizures
Visual and/or hearing problems
Developmental delays, learning disabilities
Heart, liver or kidney disease
Gastrointestinal disorders, severe constipation
Diabetes
Increased risk of infection
Thyroid and/or adrenal dysfunction
Autonomic dysfunction
Neuropsychological changes characterized by confusion, disorientation and memory
loss
December 2006
How Can You Help...
For those of you who have asked
"How can I help?" First of all, we would appreciate your prayers for Joey and our family. Please pray for Joey's healing and
God's wisdom for his doctors and specialists so that we may one day have an answer. Secondly, a fund has been set up for Joey
to help offset his ongoing & increasing medical bills, medications and eqiupment needs. You can click
on the button below to make a donation. Thank you so very much for your donations - they mean more to us then you will
ever know, as do your thoughts and prayers.
The Strength of an Egg
by
J. Freitag
Parents of children with a terminal illness,
are often referred to or viewed as having strength "like a rock." Albiet flattering, it isn't quite true. It is more like
the strength of an egg. An egg, you ask? Yes!
If you'll think about it, you'll see my point. An egg has a polished,
smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be
so smooth or solid.
Most children, at some point are shown the famous egg trick. An egg set at just the right angle
can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly
different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will
be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand,
is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside
but more rock.
It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children
are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell
from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping
the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally,
the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile
existence.
Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves
back together again.
