| Zachary- December |
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This is just a quick upload of some video
we've taken over the past month or so. IT
shows Zach's great improvement once the
seizures stopped on Nov. 6 thanks to God and
the ACTH drug treatment.I know it's long
overdue for an update. Things tend to get
away from me and updating the blog gets
pushed off more than it should. First I want
to thank all our family, friends, friends of
friends and those we have not met who
continually check in for updates and news. We
really appreciate it.
Back in October, Zachary went through
seizures for three weeks while being treated
on a medication called Vigabitrin. After the
three weeks, the medicine only made the
seizures lessen, not fully stop. So on Nov.
1, he was admitted to the hospital to start a
new treatment called ACTH - it is a
hormone/steroid injection that has been a
neurology standard for treating infant spasms
since the 1940s. The treatment is one shot a
day. The bad thing about the medicine is the
potential for nasty side effects like high
blood pressure, high glucose levels, weight
gain and in worse cases infant diabetes.
Now the ACTH medication is made exclusively
by a company called QuestCor that basically
monopolized the rights, patents, etc on the
drug and decided that it would be smart to
try and tweak the medication and sink lots of
money into research. That was within the last
few years. Keep in mind this drug has been in
existence since the '40s. So because Questcor
is a small company and they spent millions on
the drug, they decided to jack the price up
from approximately $1600 a vial (which is
about 10 shots) to $23,000 a vial.
Initially our insurance outright rejected
covering the drug. So we were stuck at the
hospital while the insurance company,
Questcor and the hospital figured everything
out for us to secure this drug to
self-administer at home. While in the
hospital, the insurance had to cover the
injection of the drug so it was almost our
sanctuary. And as desperate parents wanting
nothing more than to stop the seizures we
were willing to do anything. We stayed at the
hospital with him 24/7 sleeping on the floor.
During this time, Zachary's seizures actually
increased in intensity and it was extremely
scary. He was also becoming more aware of
them and would not only get upset, but would
try to fight them. On Nov. 5, he had his most
prolonged spasm session ever which lasted 45
minutes with 175 spasms. After that, there
were no more.
Zachary has been seizure free since Nov. 6.
When a full day passed without seizures, we
were convinced it was the work of God and the
ACTH. We were not going to leave that
hospital until the treatment was complete.
But, praise God, on Nov. 8 Questcor was able
to make my insurance cover the full treatment
under a major medical clause. The total cost
of a month's worth of the injection: $72,000.
After the month's treatment under close
monitoring of visiting home nurses and a
weaning off period, Zachary is completely off
the ACTH, and completely seizure free. We
even had another EEG conducted and the brain
waves proved there is absolutely no more
seizure activity.
Since then, Zachary's development has
basically skyrocketed. The seizures held him
back considerably and even regressed him a
bit. But now he is doing great thanks to the
grace of our Lord and Savior Jesus Christ.
We know that Zachary has been in the prayers
of Christians around the country and even the
world from those that we know and even those
that we don't. Prayer requests went out and
Zachary was included on prayer lists of many
different churches, families, small groups
and others. Zachary's success and healing has
come from all your prayers and the work of
God our Father. We thank you all and praise
the Lord!
There's so much more to write about that
could all be separate posts in themselves. I
want to talk about the change in perspective
a parent goes through when experiencing this
with their child. And how focused and
appreciative one becomes with their family -
cherishing them and loving the small,
precious, simple moments that mean so much -
like your child falling asleep in your arms.
Then there's also Zachary's great
achievements. Just this weekend, he started
using a spoon and was able to bring it to his
mouth to feed himself. He did this for his
whole feeding with some minimal assistance
from mom. He can say 'mama', bring his hands
together, play with toys and does great with
'tummy time'. Smiles and laughter are a
regular blessing from him everyday. I'm
convinced that one of God's main gifts to
mankind is the laughter and smiles of a baby
- there's nothing better.
http://newsnate.blogspot.com
Tags : Cerebral Palsy Zachary Charlan Infantile Spasms West Syndrome |
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Affichage : 2594
Durée : 380 s |
| At Home with Chuck's Zachary Levi |
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http://www.younghollywood.com
We crash the pad of star of NBC's "Chuck" to
see what he does in his off-time.
YoungHollywood.com keeps up with the pulse
and vibe of the next generation. We provide
the real take on Hollywood -- revealing the
inside story of celebrity life, as told by
the best source -- celebrities themselves.
With its unparalleled access to the world
beyond the velvet rope, Young Hollywood
offers the ultimate insider's perspective on
celebrity lifestyle, travel, nightlife,
music, fashion, and more. We share the latest
scoop on what's hot, new, and undiscovered
ranging from fashion and leisure to
restaurants, exclusive clubs and gadgets.
Tags : Zachary Levi Chuck NBC Joel David Moore Less Than Perfect Rock Band Spiral Younghollywood.com |
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Affichage : 15538
Durée : 122 s |
| Letters to Zachary |
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For those who are not aware, I'm a mother of
a child that is no longer with us. Zachary,
is our angel that was due on Jan 21, 2007 but
sadly our son past away during my 2nd
trimester of pregnancy. I gave birth to our
beautiful angel here in Germany on Aug. 4,
2006. There are moments that are still very
difficult for us with out our child. It has
been the hardest thing William, Jared and
myself have ever endured. Thank you to
everyone that has offered us love, support
and encouragement, it has given us strength
and with that I wanted to share our letters
to Zachary with you guys. After all your a
huge part of our family now.
Ton of hugs ♥Mel
Music is by Karen Taylor-Good
Tags : Loss of Child stillborn Due Date Missing Angel Heaven anniversary Letters to heaven Zachary Brother Son Death Longing |
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Affichage : 3605
Durée : 339 s |
| Dear Zachary: A Letter to a Son About His Father trailer |
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A loving tribute to a friend, son and father,
DEAR ZACHARY transcends memorial, telling the
heart-breaking story of Dr. Andrew Bagby's
senseless death and the Canadian judicial
system's failure to protect his legacy.
D: Kurt Kuenne / USA / 95 min.
Screening schedule:
Friday, April 25 - Bloor Cinema, 6:30pm
Sunday, April 27 - Isabel Bader Theatre, 11am
Tags : Documentary Trailer |
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Affichage : 1685
Durée : 188 s |
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